Journal of the Mississippi State Medical Association | Volume LXI |No. 9

VOLUME LXI • NO. 9 • SEPTEMBER 2020

UNCOVERING REASONS FOR DISPARITIES IN CARDIOVASCULAR DISEASE AND NEW APPROACHES TO REDUCE THEM

TRANSFORMING A HISTORY OF AFRICAN AMERICANS’ HEART DISEASE INTO A LEGACY OF HEART HEALTH C OM M E MO R AT I V E E D I T I O N

VOL. LXI • NO. 9 • SEPTEMBER 2020

SCIENCE ARTICLES

EDITOR Lucius M. Lampton, MD ASSOCIATE EDITORS Douglas R. Bacon, MD Philip T. Merideth, MD, JD DIRECTOR OF COMMUNICATIONS & MARKETING Ashley Grant PUBLICATIONS COMMITTEE Sheila Bouldin, MD, Chair Dwalia S. South, MD, Chair Emeritus Thomas C. Dobbs, MD Javed Butler, MD Cesar Cardenas, Jr., MD and the Editors

THE ASSOCIATION President W. Mark Horne, MD President-Elect Geri Lee Weiland, MD Secretary-Treasurer Joe Austin, MD Speaker Jeffrey A. Morris, MD Vice Speaker Carlos Lattore, MD Executive Director Claude D. Brunson, MD

JOURNAL OF THE MISSISSIPPI STATE MEDICAL ASSOCIATION (ISSN 0026-6396) is owned and published monthly by the Mississippi State Medical Association, founded 1856, located at 408 West Parkway Place, Ridgeland, Mississippi 39158-2548. (ISSN# 0026-6396 as mandated by section E211.10, Domestic Mail Manual). Periodicals postage paid at Jackson, MS and at additional mailing offices. CORRESPONDENCE: Journal MSMA, Managing Editor, Ashley Grant, P.O. Box 2548, Ridgeland, MS 39158-2548, Ph.: 601-853-6733, Fax: 601-853-6746, www.MSMAonline.com. SUBSCRIPTION RATE: $83.00 per annum; $96.00 per annum for foreign subscriptions; $7.00 per copy, $10.00 per foreign copy, as available. ADVERTISING RATES: furnished on request. Ashley Grant, ext 324. Email: AGrant@MSMAonline.com POSTMASTER: send address changes to Journal of the Mississippi State Medical Association, P.O. Box 2548, Ridgeland, MS 39158-2548. The views expressed in this publication reflect the opinions of the authors and do not necessarily state the opinions or policies of the Mississippi State Medical Association. Copyright © 2020 Mississippi State Medical Association.

Official Publication

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The Jackson Heart Study 2020 Frances C. Henderson, EdD; Cheryl Nelson, MSPH; Herman A. Taylor, MD, MPH; Adolfo Correa, MD, MPH; Asoka Srinivasan, PhD The Jackson Heart Study: Building Inter-Institutional Collaboration Cheryl Nelson, MSPH; Herman A. Taylor, MD, MPH; Adolfo Correa, MD, MPH; Asoka Srinivasan, PhD; Frances C. Henderson, EdD Recruitment of Participants in the Jackson Heart Study Frances C. Henderson, EdD; Sonja Fuqua, PhD; Mary Crump, RN, DrPH; Karen Winters, RN, PhD; Donna Antoine-LaVigne, PhD Retention of Jackson Heart Study Participants, Community Outreach and Health Education Frances C. Henderson, EdD; Sonja Fuqua, PhD; Mary Crump, RN, DrPH; Karen Winters, RN, PhD; Donna Antoine-LaVigne, PhD The Jackson Heart Study: Data Acquisition, Analysis, and Dissemination of Findings Karen Winters, RN, PhD; Adolfo Correa, MD, MPH; Mario Sims, PhD; Pramod Anugu, MS; Yuan I. Min, PhD; Lynette Ekunwe, PhD; Cheryl Nelson, MSPH; Frances C. Henderson, EdD Jackson Heart Study: Training and Education Centers Develop a Diverse Public Health Workforce Frances C. Henderson, EdD; Wendy White, PhD; Asoka Srinivasan, PhD; Marinelle Payton, MD, PhD; Bettina Beech, PhD; Cheryl Nelson, MSPH The Jackson Heart Study: Enables the Next Generation of Clinicians and Researchers through Mentoring Ervin Fox, MD, MPH; Mario Sims, PhD; Herman A. Taylor, MD, MPH; Solomon Musani, PhD; Frances C. Henderson, EdD

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COMMENTARIES The Jackson Heart Study: Pipeline to Practice Jared K. Taylor, MD The Next Ten Years: Projections from the Jackson Heart Study Center Directors Adolfo Correa, MD, MPH; Marinelle Payton, MD, PhD; Wendy White, PhD; Victor Sutton, PhD; Frances C. Henderson, EdD Implementation Science and Implications for the Future of the Jackson Heart Study George A. Mensah, MD; Cheryl Nelson, MSPH; Frances C. Henderson, EdD The Right Leaders in the Right Place at the Right Time to Plan the Jackson Heart Study: An Interview with Daniel W. Jones, MD Frances C. Henderson, EdD The Jackson Heart Study and the Birth of Precision Medicine Herman A. Taylor, MD, MPH

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DEPARTMENTS From the Editor – Celebrating Mississippi’s Framingham: 234 Twenty Years of the Jackson Heart Study (JHS) Lucius M. Lampton, MD Letter from the Guest Editor 237 Thad F. Waites, MD Foreword: Jackson Heart Study 20th Anniversary 239 Susan B. Shurin, MD and Gary H. Gibbons, MD Images in Mississippi Medicine – Mississippi’s Framingham: Twenty Years of the 324 Jackson Heart Study (JHS), its Roots, and its Impact on Mississippi and the World Lucius M. Lampton, MD Poetry and Medicine – Heart 326 John Stone, MD

ABOUT THE COVER The Journal of the Mississippi State Medical is pleased to present this special edition to commemorate the 20th Anniversary of the Jackson Heart Study (JHS). To all the JHS staff, directors, principal investigators, researchers, scholars, participants and other stakeholders– Congratulations on the success of this phenomenal study and remarkable scientific achievement. The editors and coeditors hope that the accomplishments, impact and implications of the JHS will add to the key resources available to Mississippi physicians who seek to improve the overall health of Mississippians through numerous public health initiatives. Launched in 1998, the JHS is the largest research study in history to investigate the biological, genetic, and environmental risk factors associated with the disproportionate burden of cardiovascular disease in African Americans. Jointly funded by the NHLBI and the National Institute on Minority Health and Health Disparities, this longitudinal cohort study follows the health of about 5,300 African Americans in the Jackson, Mississippi, metropolitan area. Like many other communities in the Southeastern United States, Jackson has high rates of death and disability from cardiovascular disease. n

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FROM THE EDITOR

Celebrating Mississippi’s Framingham: Twenty Years of the Jackson Heart Study (JHS)

his special issue of our JMSMA presents a celebration of the groundbreaking Jackson Heart Study (JHS), the largest single-site, prospective, epidemiologic study of African-American cardiovascular disease (CVD) ever initiated. This population-based longitudinal investigation located in Mississippi’s capital city examines the evolution of CVD in African American men and women. The JHS will significantly impact not only the lives of African Americans in Mississippi, but also the quality of medical care provided throughout the United States. The genesis of the JHS can be traced to both the success and weakness of the pioneering Framingham Heart Study (FHS). That seminal study, which began in 1948 under the direction of the National Heart, Lung, and Blood Institute (NHLBI), investigates common factors that influence CVD development. Its original cohort included over 5000 men and women from the town of Framingham, Massachusetts. Over the last 72 years, three generations of participants have been followed, and major CVD risk factors have been identified. Easily one of the most influential medical studies ever conducted, the FHS has helped identify most of

the “risk factors” which influence CVD; its researchers even coined the term “risk factor.” Despite shaping the way heart disease is treated, the FHS’s lack of diversity is a major weakness. The original cohort was comprised largely of whites of European descent, with less than 4% of non-European ethnicity. Genetic differences in CVD development were perceived as early as the mid-1960s, and efforts by the NHLBI to create a more racially diverse study cohort resulted in the Atherosclerosis Risk in Communities (ARIC) Study which followed the FHS’s basic premise among more diverse populations. One of those ARIC sites was established in Jackson, and the data from this site proved so valuable that the NHLBI funded the Jackson Heart Study to expand its work. After twenty years (and more) of exceptional investigation and research, Mississippi’s Framingham, the JHS, continues to guide physicians in quality medical care and CVD prevention in the 21st century. Bravo, JHS, for a job well done! n Contact me at lukelampton@cableone.net.

— Lucius M. Lampton, MD, Editor

JOURNAL EDITORIAL ADVISORY BOARD ADDICTION MEDICINE Scott L. Hambleton, MD ALLERGY/IMMUNOLOGY Richard D. deShazo, MD Stephen B. LeBlanc, MD Patricia H. Stewart, MD ANESTHESIOLOGY Douglas R. Bacon, MD John W. Bethea, Jr., MD CARDIOVASCULAR DISEASE Thad F. Waites, MD CHILD & ADOLESCENT PSYCHIATRY John Elgin Wilkaitis, MD CLINICAL NEUROPHYSIOLOGY Alan R. Moore, MD DERMATOLOGY Robert T. Brodell, MD Adam C. Byrd, MD EMERGENCY MEDICINE Philip Levin, MD

MEDICAL STUDENT John F. G. Bobo, M4

PLASTIC SURGERY William C. Lineaweaver, MD, Chair

NEPHROLOGY Harvey A. Gersh, MD Sohail Abdul Salim, MD

PSYCHIATRY Beverly J. Bryant, MD June A. Powell, MD

NEUROLOGY Mary Alissa Willis, MD

PUBLIC HEALTH Mary Margaret Currier, MD, MPH

HEMATOLOGY/ONCOLOGY Carter Milner, MD Kelly Wilkinson, MD

OBSTETRICS & GYNECOLOGY Sidney W. Bondurant, MD Sheila Bouldin, MD Elizabeth A. Lutz, MD Darden H. North, MD

PULMONARY DISEASE Sharon P. Douglas, MD John R. Spurzem, MD

INFECTIOUS DISEASE Rathel "Skip" Nolen, III, MD

ORTHOPEDIC SURGERY Chris E. Wiggins, MD

INTERNAL MEDICINE Richard D. deShazo, MD Daniel P. Edney, MD Daniel W. Jones, MD Brett C. Lampton, MD Kelly J. Wilkinson, MD

OTOLARYNGOLOGY Bradford J. Dye, III, MD

FAMILY MEDICINE Tim J. Alford, MD Diane K. Beebe, MD Jennifer Bryan, MD J. Edward Hill, MD GASTROENTEROLOGY James Q. Sones, MD GENERAL SURGERY Andrew C. Mallette, MD

INTERNAL MEDICINE/EPIDEMIOLOGY Thomas E. Dobbs, MD

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PEDIATRIC OTOLARYNGOLOGY Jeffrey D. Carron, MD PEDIATRICS Michael Artigues, MD

RADIOLOGY Justin Lohmeier, MD P. H. (Hal) Moore, Jr., MD UROLOGY Charles R. Pound, MD VASCULAR SURGERY Taimur Saleem, MD

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Providers listed in the photo, left to right: Amanda L. Broom, CNP; Ashley C. Palmer, PA-C; Katherine A. Meyers, PA-C; Robert J. Robbins, MD, FACS, FCCP, RPVI; Wissam K. Mechleb, MD, FACC; B. Craig Chancellor, ACNP; Eric W. Enger, MD, FACC; James B. Kot, MD, FACS; John R. Lovejoy, MD, FACC; L. Carr McClain, MD, FACS; Allison C.Henderson, PA-C; Sheena T. McElhaney, PA-C SITTING: Benjamin T. Rester, MD FACC; G. Josh Blair, MD, FACC; Arthur C. Martin, MD, FACC; Craig A. Thieling, MD, FACC; Randel L. Smith, MD, FACC; Christopher J. Douglas, MD, FACC, FSCAI; Robert G. Wilkins, MD, FACC; Lawrence J. Leader, DO, FACC; Thad F. Waites, MD, MACC; S.M. “Mark” Borganelli, MD, FACC STANDING:

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Letter from the Guest Editor, Thad F. Waites, MD

am honored to be asked by the Journal editors to be part of the Jackson Heart Study 20th Anniversary edition of the Journal MSMA. This edition provides extensive and insightful information about this phenomenal program. As a cardiologist and as a member of the Mississippi State Board of Health, I have certainly been aware of the study. However, until now, I was not as knowledgeable about this notable and outstanding study with its fantastic legacy- current contributions and future. I grew up with the Framingham Study and, later, the Bogalusa Heart Study. Then, when the Jackson Heart Study was initiated, I was fortunate to be associated with Dr. Herman Taylor through the American Heart Association’s regional board and the American College of Cardiology. Dr. Taylor gave superb presentations of the study, but I did not, until reading this publication, understand what a phenomenal achievement it is. From the documents in this issue, you will see that the Jackson Heart Study is the largest, single-site-focused, comprehensive study of an all African American cohort ever undertaken. It is funded by the National Institutes of Health/National Heart, Lung, and Blood Institute. For the last 20 years, it has been a living laboratory making significant scientific discoveries with much more to come. From the start, this had been a successful collaborative

effort of three college and university partners. Later, in 2018, a state agency, the Mississippi State Department of Health (MSDH), joined the study. The study incorporates training and education centers and an associated scholars’ program. Along with the mentoring program, these centers already have an outstanding record of accomplishments, and they are building for the future. Furthermore, the publications division has delivered numerous studies and presentations. The heart of the study is the Jackson community and its African American citizens. There is now a Community Engagement Center, directed by the MSDH and Dr. Victor Sutton. The study has always researched the social determinants of health, and the interplay of social and biological systems that can lead to cardiovascular and other diseases. Changing and improving these social determinants is crucial to improving the disparities of health that are now present. In the current pandemic and our national social dialogs, this is of utmost importance. The Jackson Heart Study is a national treasure. I encourage you to read the documents of this edition of the Journal carefully. I know that you will then agree.

[Thad Fulton Waites, MD, is a Hattiesburg physician who currently serves as co-director of the Cardiac Catherization Lab at Forrest General Hospital. He is a graduate of Mississippi College and the University of Mississippi Medical Center. He trained at the University of Colorado and Emory University. He was a flight surgeon in the United States Naval Reserve and has practiced cardiology at Ochsner Clinic in Louisiana. He has served as president of Mississippi Affiliate of the American Heart Association as well as twice president of the American Heart Southeast Affiliate. Waites served as the Governor for Mississippi on the American College of Cardiology (ACC) Board of Governors. He then served as the Chairman of the Board of the ACC. He was selected to be a Master of the ACC and is the first Mississippian to receive this designation. Most recently, he was elected to serve as chair of the Mississippi State Board of Health; he has been a member of the Board since 2010.]

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Celebrating a history of cardiovascular research Providing evidence-based cardiovascular care today UMMC thanks the participants, researchers, and everyone who has made the Jackson Heart Study a success for the past 20 years. Research programs like the Jackson Heart Study guide the cardiac care we offer at University Heart. Our specialists and subspecialists provide expert treatment including programs for congenital heart disease, advanced heart failure, structural heart disease, peripheral vascular disease, electrophysiology, transplant, and advanced cardiac imaging. We even offer unique clinics to care for women, athletes, and cancer patients with heart disease. For consultations and referrals, call 601.984.5678.

Foreword Susan B. Shurin, MD

Former Deputy and Acting Director, National Heart, Lung, and Blood Institute

Gary H. Gibbons, MD

Director, National Heart, Lung, and Blood Institute

Jackson Heart Study 20th Anniversary

n the year 1999, the National Heart, Lung, and Blood Institute of the National Institutes of Health proudly funded the Jackson Heart Study to address one of the biggest single challenges to biomedical research: the disproportionate burden of cardiovascular disease in African Americans. Modeled after the Framingham Heart Study–the NHLBI's landmark population study that identified hypertension, high cholesterol, family history, and smoking as major risk factors for heart disease later in life–the Jackson Heart Study (JHS) was initiated to investigate genetic and environmental causes of cardiovascular disease in African Americans and to learn how best to mitigate them. Two decades later, with ongoing support from institutes across the NIH, the JHS has completed three cohort examinations that have produced extensive longitudinal data on physiological, behavioral, socioeconomic, and sociocultural risk factors for cardiovascular disease. It conducts annual cohort follow-ups, a variety of community education and outreach activities to promote healthy lifestyles to reduce disease risk burden, and undergraduate- and graduate-level training programs to promote and support public health research. At the “heart” of the JHS are the true “owners” of the study–the participant community. Their participation in observational studies year after year contributes to our ability as a nation to advance science. From citizens to scientists, the JHS is truly a collaborative community effort: creative, dedicated researchers across three Mississippi academic institutions and the Mississippi State Department of Health work closely together to design and conduct the studies, analyze and publish data, and share findings with study participants, members of the Jackson community, and countless others across the country. In the years since the JHS began, new therapies and improved preventive measures for cardiovascular disease have yielded public health benefits. However, there is still much work to be done. From 1999 to 2015, the all-cause mortality rate between African Americans and Non-African Americans improved from 33% to 16%, respectively. While heart disease mortality has declined more than 70% since 1950, progress has slowed and a disparate burden of death and disease–including chronic precursors to cardiovascular disease such as diabetes, obesity, and kidney disease–persist in populations at higher risk. Research increasingly shows that socioeconomic factors, including poverty, place of residence, diet, air quality, education, and stress, play a role in contributing to this increased risk and overall health disparities. The JHS continues to be crucial in addressing these issues and understanding the interplay of social and biological systems in disease prevention, not just in the United States, but around the world. As new scientific opportunities arise, ongoing support by a committed circle of federal partners and stakeholders, paired with community engagement, will be vital to yielding better health outcomes. That support includes implementation science for community health where community stakeholders–health centers, thought leaders, civic organizations, and nongovernmental organizations, among others—are actively engaged. Fostering this inextricable link between committed stakeholders, an engaged community, and effective interventions will help us address health disparities in novel ways on the path to achieving health equity.

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SCIENCE OF MEDICINE

The Jackson Heart Study 2020 FRANCES C. HENDERSON, EDD; CHERYL NELSON, MSPH; HERMAN A. TAYLOR, MD, MPH; ADOLFO CORREA, MD, MPH; ASOKA SRINIVASAN, PHD

he Jackson Heart Study (JHS) is the largest single-site, prospective, epidemiologic investigation of cardiovascular disease among African Americans that has ever been undertaken. It is a community-based, observational, longitudinal study of 5306 African American men and women in Jackson, Mississippi. Since there is a greater prevalence of cardiovascular disease among African Americans, the purpose of the JHS is to explore the reasons for this disparity and to uncover new approaches to reduce it. The primary objective of the JHS is to investigate the environmental and genetic risk factors associated with the disproportionate burden of cardiovascular disease in African Americans.1 In this special issue of the Journal of the Mississippi State Medical Association, our coeditors’ team (Henderson, Nelson, Taylor, Correa, and Srinivasan) is proud to provide readers with a compelling account of significant accomplishments of the JHS from the idea and funding of a planning grant in 1996 to the enrollment of

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the first participant in September 2000, to 20 years later, September 2020. The voices that tell this story are those of five coeditors and 19 authors, with current and former roles and longevity with the study. As coeditors, we facilitated the input of community, staff, faculty, investigators, postdoctoral fellows, former undergraduate scholars now in prominent research, public health and related positions, graduate scholars, collaborators, stakeholders, and others. Since the JHS is a significant part of the lives of more than 10,000 individuals who have been in some way affiliated with it, no one voice can speak for all. We want to reach medical, public health, and research audiences with the segments of the JHS story most relevant to their potential uses. We hope that the accomplishments, impact, and implications of the JHS will add to the key resources available to Mississippi physicians who seek to improve the overall health of Mississippians through numerous public health initiatives.

• Retention, Community Outreach and Health Education based on the same qualitative and quantitative data collected from the community that enabled the retention of 78% of the cohort 13 years later, and guided community outreach and heart health education based on study findings. • Data Acquisition, Analysis, and Dissemination of Findings that address the medical, scientific, and statistical communities as well as non-scientists, including participants and the Jackson area community at large.

Dr. Joseph Cameron and Dr. Bettye Ward-Fletcher from JSU, Dr. Richard Hutchinson from ARIC and Dr. Herman Taylor. Coeditors’ Overview of Contents This special issue of the Journal of the Mississippi State Medical Association commemorating the 20th Anniversary of the JHS includes six articles, in addition to this one, that chronicle study activities related to: • Building Inter-Institutional Collaboration among Jackson State University, Tougaloo College and University of Mississippi Medical Center, the three Jackson, Mississippi institutions funded by the National Institutes of Health (NIH)/National Heart, Lung, and Blood Institute NHLBI, and the National Institute on Minority Health and Health Disparities to collaborate in administering the Study. • Recruitment of Participants that presents an approach based on qualitative and quantitative data collected from the community as the building blocks for successful recruitment of 5306 African Americans.

• Training and Education Centers at the undergraduate and graduate levels that develop a diverse public health and biomedical workforce. • A Mentoring Model that Enables the Next Generation of Clinicians and Researchers that has increased opportunities for underrepresented minority populations in Mississippi and beyond. This special issue also includes five commentaries: • The Jackson Heart Study Pipeline to Practice, which is the career trajectory of a former JHS Scholar at Tougaloo College who is a board-certified psychiatrist practicing in Jackson. • The Next Ten Years: Projections from Jackson Heart Study Center Directors on future research initiatives, gaps to be addressed, and benefits of the JHS to the Physician/Primary Care Provider Community during the next ten years. • Implementation Science and Implications for the Future of the Jackson Heart Study: The vision of the Director of the Center for Translation Research and Implementation Science on the possibilities for translating science discovered using JHS data into practice in clinical and public health settings. • The Right Leaders in the Right Place at the Right Time: The chairperson of the Jackson Heart Study Planning Committee reflected on institute and institutional leaders and researchers during the planning and feasibility phases of the JHS: Dr. Claude Lenfant, Director of the NHLBI; Dr. Wallace Conerly, Vice-Chancellor UMMC; Dr. James Lyons, President, Jackson State University; Dr. Joe Lee, President Tougaloo College; and Dr. Sharon Wyatt, UMMC School of Nursing. • The Jackson Heart Study and the Birth of Precision Medicine: The inaugural JHS principal investigator reflected on the multi-layered complexity of the JHS as the seat of its “precision.” He also reflected on the continued arc of progress blossoming from seeds that were planted 20 years ago.

Dr. Robert Garrison (formerly with the JHS) and Dr. William Heetderks from the NIH/NHLBI at the 2010 Scientific Conference.

One of the recommendations from the Study Group on Cardiovascular and Cerebrovascular Disease emanating from the Report of the Secretary’s Task Force on Black and Minority Health spoke directly to the impetus for the Jackson Heart Study: “Population-based, prospective, observational studies of coronary heart disease (similar

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to the Framingham study) are needed for minority populations. A key component of this research would be the validation in minorities of the major established or suspected biological and psychological risk factors for cardiovascular disease that have been identified for the white American population.”2 Not only did the Framingham Heart Study (FHS) precede the Jackson Heart Study, so did a constellation of other cohort studies of cardiovascular disease that shape the context within which the JHS emerged. One among a Constellation of Population Studies with Similarities and Differences The JHS fit logically among a constellation of population-based cohort studies funded by the NIH/NHLBI between 1948 and 2000. Population-based cohort studies go along with and help to enhance other epidemiological study designs such as surveillance studies, cross-sectional surveys, case-control studies, and clinical epidemiology studies. Although population-based cohort studies are expensive and take a long time to conduct to the point of generating new findings, they provide risk information that cannot be obtained in any other way and that is understandable to the public and the media. Additionally, they identify risk factors that can be modified by day-to-day health care practices to prevent disease, and they permit investigation of clinical practice patterns in the community.3 Between 1948 and 2006, the National Institutes of Health/National Heart, Lung, and Blood Institute funded 11 such studies of adult populations (see Table 1). Dr. Claude Lenfant, the longest-serving director of the NHLBI (19822003), was a long-time advocate and activist for focused research in minority populations where issues unique to the population could be addressed. This philosophy and practice were evident among staff based on lessons learned and many yet unanswered questions from other funded cohort studies: FHS; Puerto Rico Heart Health Program; Honolulu Heart Program (HHP); Coronary Artery Risk Development in Young Adults; ARIC Study for Atherosclerosis Risk in Communities Study; Strong Heart Study; and the Cardiovascular Health Study.

Juan. The objectives of the study were to 1) identify factors related to the development of coronary heart disease; 2) compare the cause of disease in rural versus urban men, and 3) determine the prevalence and incidence of coronary heart disease and other cardiovascular diseases in Puerto Rican men. It concluded in 1980.4 The HHP, also started in 1965, was a study of the environmental and biological causes of cardiovascular disease among American men of Japanese ancestry born between 1900 and 1919 and living on the island of Oahu, Hawaii. Specifically, the purpose of the HHP was to investigate coronary heart disease and stroke in this population known to have a low incidence of coronary heart disease but a high incidence of stroke. It was a component of the larger Nippon, Honolulu, San Francisco Study, also started in 1965 to compare findings among the HHP participants and men of Japanese ancestry born between 1900 and 1919 and living in Japan and San Francisco. Although the last examination was conducted in 1996, a surveillance study of morbidity and mortality of the original cohort is ongoing.5 Coronary Artery Risk Development in Young Adults, an investigation on how heart disease develops in adults, began in 1985. The study aims to identify the predictors of the development and progression of subclinical atherosclerosis, including the roles of genetics and environment; assess racial differences in severity and progression of the early subclinical disease to determine the differences in the causes of cardiovascular disease; and to make specific determinations about inflammation and subclinical disease, including the impact of obesity on blood vessel inflammation. The study cohort of 5115 was half

The FHS funded continuously by the NHLBI since 1948, is the oldest observational study in epidemiology. It is a single-site cohort study with Boston University conducted in a middle income, white community in Framingham, Massachusetts, and now has participants spanning three generations and includes an African American subset. The FHS aims to identify common factors or characteristics that contribute to cardiovascular disease by following its development over time in a large group of participants who had not yet developed cardiovascular disease symptoms or suffered a heart attack or stroke.3 The Puerto Rico Heart Health Program started in 1965, was a study of lifestyle, environmental, and biological factors in the progression of cardiovascular disease in Puerto Rican men. Two contrasting subgroups were selected for study: a rural population from a mountainous community and an urban population selected from San

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Dr. Richard Hutchinson and Dr. Robert Smith

Table 1. National Heart, Lung, and Blood Institute Supported Longitudinal Cohort Studies. The Framingham Heart Study

October 1948– Framingham, Massachusetts Data coordinating center: Boston University 1948: Original cohort, 5209 White participants, 55% female, 26–66 years old 1997: Second generation cohort (offspring), 5124 participants, 52% female, 5–70 years old 1994: Omni 1 cohort, 507 participants, 58% female, 36% African American, 23% Asian, 40% Hispanic, 35–75 years old 2002: Generation 3 cohort, 4095 participants, 53% female, 19–72 years old 2003: Omni 2 cohort, 410 participants, 57% female, 20% African American, 25% Asian, 41% Hispanic, 19–75 years old

The Puerto Rico Heart Health Program

May 1965–1980 Puerto Rico 9824 participants (2976 rural, 6848 urban) men, 45–64 years old

The Honolulu Heart Program

July 1965–2002 Oahu, Hawaii 8006 participants American men of Japanese ancestry, 28–62 years old

Coronary Artery Risk Development in Young Adults

January 1984 Four field sites: Northwestern University; Kaiser Research Foundation, University of Alabama, Birmingham; University of Minnesota Data Coordinating Center 5115 African American and White men and women, 18–30 years old

Atherosclerosis Risk in Communities

July 1985 Four field sites: Forsyth County, North Carolina; Jackson, Mississippi; Minneapolis, Minnesota; Washington County, Maryland Data coordinating center: University of North Carolina, Chapel Hill 4000 participants from each community; 15,792 middle-aged men and women

The Cardiovascular Health Study

June 1988–2020 Four field sites: University of Pittsburgh; Johns Hopkins University; Wake Forest University; University of California, Davis Data coordinating center: University of Washington 5888 men and women 65 years and older

The Strong Heart Study

1988–2018 Three field sites: North/South Dakota; Arizona; Oklahoma Data coordinating center: University of Oklahoma 4549 American Indian adult men and women 45–74 years old

The Multi-Ethnic Study of Atherosclerosis

July 2000– Six field sites: Columbia University; Johns Hopkins University; Northwestern University; University of California Los Angeles; University of Minnesota; Wake Forest University Data coordinating center: University of Washington 6814 men and women 45–84 years old [38% White, 28% African American, 23% Hispanic, and 12% Asian (predominantly of Chinese descent)]

Genetics of Coronary Artery Disease in Alaskan Natives

October 2000–2005 Native Alaskans/Eskimo villages Participating institutions: Norton Sound Health Corporation; Cornell Medical Center; Southwest Foundation for Biomedical Research; MedStar Research Institute 1214 Eskimos (40 families) from several coastal villages in the Norton Sound region of Western Alaska

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African American and half White men and women 18–30 years of age. The four study sites were Birmingham, Alabama; Chicago, Illinois; Minneapolis, Minnesota; and Oakland, California.6 The ARIC Study, funded in 1987, is a prospective, epidemiologic study conducted in four United States communities; Forsyth County, North Carolina; Jackson, Mississippi; Minneapolis, Minnesota; and Washington County, Maryland. The study is designed to investigate the etiology and natural history of atherosclerosis, the etiology of clinical atherosclerotic diseases, and variations in cardiovascular disease risk factors, medical care, and disease by race, gender, location, and date. It includes both cohort and community surveillance components. Followup occurs yearly by telephone to maintain contact with participants and to assess the health status of the cohort. Jackson, Mississippi is the site of an all-African American cohort.7 The Cardiovascular Health Study, of risk factors for cardiovascular disease in adults 65 years of age or older, started in 1989 and continued through 1999. Cohort recruitment in June 1990 resulted in a total of 5201 participants at four field centers. Between November 1992 and June 1993, an additional 687 African Americans were recruited. The field centers are located in Forsyth County, North Carolina; Sacramento, California; Washington County, Maryland, and Pittsburgh, Pennsylvania.8 The Strong Heart Study began in 1988 and was funded through 2013. It was an investigation of cardiovascular disease and its risk factors among 4500 eligible tribal members from 13 American Indian tribes and communities in an area near Phoenix, Arizona, southwest Oklahoma, and North and South Dakota. The Strong Heart Study was the first among population-based, observational cohort studies funded by the NHLBI since 1988 not to have a comparison group. This allowed researchers to look at the richness in a minority group without comparing them to anybody else.9 In 2000, the NHLBI funded three studies Genetics of Coronary Artery Disease in Alaska Natives, the Multi-Ethnic Study of Atherosclerosis, and the JHS. Genetics of Coronary Artery Disease in Alaska Natives is an investigation of the contribution of genetics and environment to heart and blood vessel disease in several villages on Norton Sound in Alaska. The study aims to carefully document and analyze cardiovascular disease and risk factors among 1200 Alaskan Eskimos who are residents of Nome, Alaska, or one of eight Norton Sound villages. This is the first project to identify and map genes that contribute to the risk of cardiovascular disease in an understudied population that is beginning to demonstrate increased cardiovascular disease burden.10 The Multi-Ethnic Study of Atherosclerosis is a multisite study at six locations with four ethnic groups represented to address ethnic differences in research on cardiovascular disease. The participating institutions are Columbia University, New York, New York; Johns Hopkins University, Baltimore, Maryland; Northwestern University, Chicago, Illinois; University of California, Los Angeles, Los Angeles,

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Dr. Teri Manolio Speaking California; University of Minnesota, Twin Cities, Minnesota; and Wake Forest University, Winston Salem, North Carolina. It is a study of the characteristics of cardiovascular disease before it has produced clinical signs and symptoms and the risk factors that predict progression to cardiovascular disease.11 All NHLBI contract-supported longitudinal cohort studies follow similar data collection protocols for major study components and provide opportunities for pooling data across studies and collaborating in consortia to address scientific questions for which larger sample sizes are required. The cohort studies that include African Americans, such as Coronary Artery Risk Development in Young Adults, ARIC, and Multiethnic Study of Atherosclerosis examine racial/ethnic differences. The JHS has more features similar to the FHS, a single-site study of cardiovascular disease risk factors, than the Puerto Rico Heart Health Program and HHP, which focused on disease progression and causative factors. The age groups for Coronary Risk Development in Young Adults and Cardiovascular Health studies are younger and older, respectively, than the Jackson Heart Study age range of 35–84. Among the NIH/NHLBI constellation of studies, the JHS is the only single-site study administered by a partnership of three academic institutions. The JHS is a dynamic, ever-expanding study aligned with scientific and socio-cultural trends of the times during which it was planned, implemented, and continued through a series of contract renewals. The initial implementation was for five years, 1999-2004; this was followed by eight-year, five-year, and six-year contract renewals; 2005–2013, 2013–2018, and 2018–2024, respectively (Table 2). Initial Aims 1999–2004; Contract Renewal Goals 2005–2013, 2013–2018 and 2018–2024 There were four initial aims of the JHS; each aim was unique in its specificity. Aim one was specific in describing the site, the population, and the relationship of the JHS to a sister study, also located in Jackson, Mississippi. Aim two was specific in the statement of factors to be identified and the emphasis on certain cardiovascular conditions

Table 2. Jackson Heart Study Initial Objectives and Renewal Objectives 2005, 2013, 2018. 5/1999–5/2004

Initial Objectives 1. Establish a single-site epidemiological study of cardiovascular disease in African American men and women through including and expanding the Jackson Atherosclerosis Risk in Communities Study. 2. Identify risk factors or factors for the development and progression of cardiovascular disease in African Americans with an emphasis on manifestations related to hypertension (such as left ventricular hypertrophy, coronary heart disease, heart failure, stroke, and renovascular disease). 3. Build research capabilities in minority institutions at the undergraduate and graduate level by developing partnerships between minority and majority institutions and enhancing the participation of minority investigators in large-scale epidemiological studies. 4. Develop programs to attract minority students and prepare them for careers in public health and epidemiology

5/2005–8/2013

Renewal Objectives 1. Continue a longitudinal epidemiological study of African American men and women by examination and follow-up of roughly 5301 Jackson Heart Study participants. 2. Identify genetic, biological, and environmental risk factors for the development and progression of cardiovascular disease in African American men and women. 3. Maintain cohort and community participation and continue community outreach for health education and risk reduction. 4. Enhance the scientific productivity of the Jackson Heart Study and develop methods for enhancing cohort retention and participation in the Jackson Heart Study. 5. Expand minority participation in cardiovascular disease epidemiology research by building research capacities at minority institutions and attracting minority students to careers in epidemiology and public health. 6. Enhance genetic expertise of the Jackson Heart Study through collaboration with other Universities and the National Heart, Lung, and Blood Institute and increase scientific productivity and training in the area of genetic epidemiology.

8/2013–8/2018

Renewal Objectives 1. Support dedicated time for the Jackson Heart Study investigators to conduct data analysis and prepare manuscripts using the wealth of collected Jackson Heart Study data. 2. Facilitate access to study resources and expertise to: (a) engage researchers beyond the Jackson Heart Study in collaborative analysis of existing data to produce high-quality publications; (b) serve as a training ground for undergraduate and graduate students and early career investigators as appropriate, to help ameliorate the shortage of minority biomedical researchers; and (c) serve as a platform for ancillary studies. 3. Conduct annual interviews with participants to identify interim hospitalizations and outpatient visits, convey information about the Jackson Heart Study, and serve as a vehicle to recruit for ancillary studies. 4. Continue clinical events identification, investigation, and validation to improve statistical power for risk prediction and hypothesis testing. 5. Perform community health education activities to disseminate health promotion and prevention messages in the Jackson community.

2018–2024

Renewal Objectives 1. Continue novel epidemiologic research on cardiovascular and related diseases. 2. Serve as a resource to the scientific community. 3. Promote cardiovascular health. 4. Encourage minority students to pursue biomedical careers.

prevalent in African Americans. Aim three specifically addressed building research capabilities within the participating minority institutions and developing partnerships among the three institutions. It is not a usual feature of epidemiological studies to address capacity building. However, this is one of several unique features of the JHS. Sustainability over time and the long-term elimination of disparities in health care access and outcomes may reside largely in the ability to

build, sustain, and expand research capacity, translation and related applications. Aim four identified students who have heretofore been underrepresented in careers in public health and epidemiology and specifically focused on programs to attract them to these careers. Thus, this is an additional deviation from the norm of a traditional epidemiological study. Epidemiological studies seek associative relationships between and among two or more variables. The

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In August 2018, the National Heart, Lung, and Blood Institute renewed the Jackson Heart Study contract for six years, 2018-2024, charging the Jackson Heart Study to address four objectives. The 2018-2024 Jackson Heart Study objective one addressed continuing novel epidemiologic research on cardiovascular disease and related diseases. Objective two focused on the Jackson Heart Study serving as a resource to the community, while objective three focused on the Jackson Heart Study promoting cardiovascular health. Objective four addressed encouraging minority students to pursue biomedical careers. While each of the 2018-2024 renewal contract objectives mirrored the initial Jackson Heart Study Objectives and subsequent renewal aims, the National Heart, Lung, and Blood Institute increased the number of Training and Education Centers from two to three in order to expand opportunities to encourage both undergraduate and graduate students to pursue biomedical careers including cardiovascular epidemiology. —Cheryl Nelson, MSPH; Jackson Heart Study Program Official; National Heart, Lung, and Blood Institute

association between exposure to career options in public health and epidemiology and the envisioned outcome of increased numbers of underrepresented minorities preparing to enter biomedical careers is indeed specific to leaders’ expectations of the JHS, and yet another of its unique features. For the contract renewal period 2005–2013, the primary goal of the NHLBI and the JHS was a continuation of the longitudinal, epidemiological study with a follow-up of the 5306 participants who had been recruited. Their second goal focused on research, particularly on genetics, biological and environmental risk factors, possibly impacting cardiovascular disease development and progression among African Americans. The third goal was cohort retention, which intentionally linked community outreach, health education, and risk reduction. Publications, the gold standard metric for return on investment, were the centerpiece of the National Institutes of Health’s expectations as specified in the fourth goal. This period also provided numerous opportunities to expand data collection from an already willing and committed cohort. Examples included computed tomography scans for coronary calcium and abdominal adiposity as well as magnetic resonance imaging to assess the structure and function of the heart. The fifth and sixth goals continued the emphasis on building research capacity at minority institutions and attracting minority students to careers in public health and epidemiology and increasing scientific productivity and training in the ever-expanding field of genetic epidemiology.

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The first and foremost aim of the NHLBI and the JHS in the 2013– 2018 contract renewal period was using the wealth of scientific data amassed by the study in publications that would be widely disseminated to the scientific community. The second overall aim was to expand collaboration beyond the limits of Jackson, Mississippi, by partnering with other academic institutions to produce high-quality publications using the JHS data while continuing to build investigator and undergraduate student capacity to help ameliorate the shortage of minority biomedical researchers. In 2013, the training program feature of the JHS was expanded to include graduate-level students. The JHS continued to provide a platform to foster collaborations and leverage resources for in-depth ancillary studies. By 2013, the time of the contract renewal, there were 28 years of surveillance data on approximately 1100 participants who began with the ARIC study in 1985 and continued with the JHS in 2000. The total surveillance database of approximately 3800 included an estimated 2700 JHS-only participants who began with the JHS at its inception in September 2000. Contract renewal aims two and three addressed tracking participants to obtain information on vital status, current residence, major illness or injury, and hospitalizations occurring between contacts to identify incident clinical cardiovascular disease events of interest. Renewal aim five focused on community education and outreach activities to promote healthy lifestyles and reduce disease risk burden in the Jackson community. In August 2018, the NHLBI renewed the JHS contract for six years, 2018–2024, charging the JHS to address four objectives. The 2018–

2024 JHS objective one addressed continuing novel epidemiologic research on cardiovascular disease and related diseases. Objective two focused on the JHS serving as a resource to the community, while objective three focused on theJHS promoting cardiovascular health. Objective four addressed encouraging minority students to pursue biomedical careers. While each of the 2018–2024 renewal contract objectives mirrored the initial JHS objectives and subsequent renewal aims, the NHLBI increased the number of Training and Education Centers from two to three to expand opportunities to encourage both undergraduate and graduate students to pursue biomedical careers including cardiovascular epidemiology. The initial aims and contract renewal goals of the JHS were one response to African American health disparities that held great promise for change. A Response to American Health Disparities The JHS is a response to African American’s health disparities that employs community-driven research strategies alongside scientific investigations in the tradition of Framingham and other large-scale epidemiological studies that may confirm or revise our understanding of key factors in the current cardiovascular disease epidemic. The JHS objectives were designed to address the historical and social context of cardiovascular disease, genetics, disease patterns, and risk factors. The study design was flexible enough to accommodate the addition of bioimaging and biomarkers as opportunities to collect these data from a large African American cohort became available. The JHS is an ambitious and unique undertaking in which compelling scientific objectives are coupled with creative initiatives to build capacity for research in minority health at key institutions in Mississippi (the state with the nation’s worst cardiovascular disease statistics). The dearth of scientists from the population most afflicted by cardiovascular disease means that we must prepare minority students for careers in the sciences to build an expanded and ethnically diverse scientific workforce in Mississippi. The future health of the nation compels us to produce future cohorts of scientists who are prepared to press on toward the long-term goal of eliminating health disparities from all segments of American society,12. and, in the view of Dr. Susan Shurin, the NHLBI Director 2009–2012, the JHS has the potential for global impact.13 n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN26820 1800014I), the Mississippi State Department of Health (HHSN268 201800015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health

Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services. References 1. Jackson Heart Study. About the Jackson Heart Study. Accessed July 23, 2018. https://www.jacksonheartstudy.org/About/About-The-JacksonHeartStudy 2. Report of the Secretary’s Task Force on Black and Minority Health Volume IV, Cardiovascular and Cerebrovascular Disease, Part I and Part II. Department of Health and Human Services; 1986. 3. Framingham Heart Study. Accessed July 23, 2018. https://www.framingham heartstudy.org/ 4. Puerto Rico Heart Health Program. Accessed July 23, 2018. https://biolincc.nhlbi. nih.gov/studies/prhhp/ 5. Honolulu Heart Program. Accessed July 23, 2018. https://biolincc.nhlbi.nih.gov/ studies/hhp/ 6. Coronary Artery Risk Development in Young Adults. Accessed July 23, 2018. www.cardia.dopm.uab.edu 7. Atherosclerosis Risk in Communities. Accessed July 23, 2018. http://www2.cscc. unc.edu/aric/ 8. Cardiovascular Health Study. Accessed July 23, 2018. https://chs-nhlbi.org/ 9. The Strong Heart Study. Accessed July 23, 2018. http://strongheartstudy.org/ 10. Genetics of Coronary Artery Disease in Alaskan Natives. Accessed July 23, 2018. https://www.tandfonline.com/doi/abs/10.3402/ijch.v64i3.17985; https:// clinicaltrials.gov/ct2/show/NCT00006192 11. The Multi-Ethnic Study of Atherosclerosis. Accessed July 23, 2018. http://www. mesa-nhlbi.org/ 12. Taylor HA. The Jackson Heart Study: An overview. Ethn Dis. 2005;15(4 suppl 6):S6-S3. 13. Shurin SB. Foreword: Celebrating the first ten years of research excellence from the Jackson Heart Study. Ethn Dis. 2012;22(3 suppl 1):S1-1.

Author Information Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson). Jackson Heart Study, Program Official, National Heart, Lung, and Blood Institute, Bethesda, Maryland (Nelson). Professor of Medicine, Director, Cardiovascular Research Institute, Morehouse School of Medicine, Atlanta, Georgia (Taylor). Professor of Medicine, University of Mississippi Medical Center, Principal Investigator and Director, Jackson Heart Study, Jackson, Mississippi (Correa). Professor Emerita of Biology, Former Principal Investigator, Jackson Heart Study, Undergraduate Training and Education Center, Tougaloo College, Tougaloo, Mississippi (Srinivasan).

Henderson

Nelson

Taylor

Correa

Srinivasan

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Dr. Dan Jones

Dr. Correa speaking to participants

Dr. Evelyn Walker and Dr. Sharon Wyatt

Dr. Donald Lloyd-Jones, Dr. Susan Shurin, Dr. Herman Taylor and Dr. Teri Manolio

Dr. Asoka Srinivasan, Tougaloo College

SCIENCE OF MEDICINE

The Jackson Heart Study: Building Inter-Institutional Collaboration CHERYL NELSON, MSPH; HERMAN A. TAYLOR, MD, MPH; ADOLFO CORREA, MD, MPH; ASOKA SRINIVASAN, PHD; FRANCES C. HENDERSON, EDD

he Jackson Heart Study exemplified a unique collaborative model among three college and university partners, the Jackson community, and the National Institutes of Health/National Heart, Lung, and Blood Institute to discover and test best practices for eliminating health disparities. The aims generated by the National Institutes of Health/National Heart, Lung, and Blood Institute for the Jackson Heart Study required close collaboration among Jackson State University, Tougaloo College, and the University of Mississippi Medical Center between 1999 and 2018. In the 2018 contract renewal, the National Heart, Lung, and Blood Institute (NHLBI) awarded a contract to the Mississippi State Department of Health to establish a Community Engagement Center, thus expanding the collaborative model to three Mississippi institutions of higher learning and one state agency.

science, social realities, and politics. The science imperative was to conduct the epidemiological study and strengthen the research capacity of Jackson State University (JSU) and Tougaloo College (TC) via partnerships while attracting minority students to careers in public health and epidemiology. The social imperative was to reverse the cardiovascular disease trend in Mississippi and leave a legacy of heart health. The political imperative was to provide equitable funding for research in minority health via all three institutions. These imperatives emanated from the federal task force, working groups, and local recommendations specifying the need for more minority professionals for health care and research, and minority population studies of cardiovascular disease in combination with risk-reduction interventions to promote cardiovascular health.

Partnering among Three Higher Education Institutions

The JHS was and is a living laboratory for demonstrating a partnership among three educational institutions in Mississippi, each with its unique legacy, population, and history, brought together to focus on a massive project of common interest. The National Institutes of Health/

At the inception of the Jackson Heart Study (JHS) in 1999, the three higher education institutions were challenged by three imperatives:

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than Tougaloo, Jackson State, and the University of Mississippi Medical Center. Nobody had to be pulled into it kicking and screaming. Nobody’s arms had to be twisted; it was just one of those things that everybody thought made sense. It was a good idea, and it needed to be done.

Dr. Felix Okojie (JSU) Dr. Teri Manolio (NIH/NHLBI); Dr. Dan Jones (UMMC); Dr. Bettye Ward-Fletcher (JSU) Dr. Bam Mehrotra and Dr. Christopher Sempos

The JHS would focus on cardiovascular disease, a major threat to the nation’s public health that could no longer be ignored. The three leaders noted their commitment to the success of the study and to cooperate to overcome the myriad risks and challenges that they well knew lay ahead for their respective institutions: a predominately white medical school with two historically black institutions, one state and one private undergraduate institution in one of the poorest states in the nation. The JHS faced innumerable challenges, a major one being the widely varying histories, missions, and resources of the three collaborating institutions.

National Heart, Lung, and Blood Institute (NIH/NHLBI) brought two historically minority-serving institutions and one historically majorityserving institution together to address cardiovascular disease risk factors in the Jackson African American community through a single-site epidemiological study. Between 1994 and 1999, Dr. Wallace Conerly, vice chancellor for the School of Medicine (SOM) at University of Mississippi Medical Center (UMMC); Dr. James Lyons, president of JSU; and Dr. Joe Lee, president of TC, initiated this unique partnership. The right people were in the right places at just the right intersection of science and social and political imperatives to work with the Jackson community and the NIH/NHLBI to make the JHS a reality.

Challenges to Inter-Institutional Collaboration

An observational study of African Americans conducted by or affiliated with JSU and TC would immediately generate more interest and trust than a study initiated by the predominately white institution. The UMMC, the only tertiary care center in the state, served a large percentage of the state’s African American population. However, there were seeds of discriminatory practices and mistrust sown decades in the past, such as separate waiting rooms that were not well kept, long waits for service, and no African American doctors or nurses. African Americans felt insecure when it came to trying to read lengthy consent forms, feared being given misinformation or information that it was difficult to understand, and/or feared dying as a patient in the hospital.

TC, a private, historically black, liberal arts institution accessible to all persons regardless of race, ethnic origin, religion or creed, was founded in 1869 by the American Missionary Association. It prepares its students to become self-directed learners and self-reliant persons capable of dealing with people, challenges, and issues. It contributes to the social health and educational needs of local and state communities through a program of community service.1 From its very beginnings, TC has played a crucial role in the education of African Americans in Mississippi. TC is known for the excellence of its faculty and academic programs; a majority of the state’s African American professionals and community leaders are graduates. The college provides its students with a basic knowledge of humanities, natural sciences, social sciences, and skills required for success in graduate and professional schools. Graduates of TC are equipped to provide leadership and service in a changing world.2 Through a partnership with Brown University that was initiated in 1964, TC engaged in collaborative research and related activities. During the Civil Rights Movement (1960–1964) and Freedom Summer (1964), it was a major hub of activity. It was an unrestricted meeting place for groups of mixed races and provided lodging for Freedom Riders. In March 1961, nine Tougaloo students were arrested for attempting to use the “whites only” Jackson Public Library. In June 1961, four Tougaloo students were the first “Freedom Riders” to be apprehended while trying to leave Mississippi by bus.3 Students were active in the boycotts against downtown merchants and sit-ins at bus terminals and a Woolworth’s lunch counter. They were also active participants in voter registration activities that began in the summer of 1963.

One university president, when he was told that Ole Miss was exploring the possibility of doing a major study on African Americans in the area of hypertension and cardiovascular disease, admitted that he was interested in what was really going on with Ole Miss doing a major study on African Americans when you have Howard, Drew, Meharry, and Morehouse. Howard University, in Washington, DC; Charles R. Drew University of Medicine and Science in Los Angeles, California; Meharry Medical College in Nashville, Tennessee; and Morehouse SOM in Atlanta, Georgia, are the institutions that house the four predominately black medical schools in the country, which would be the most likely locations for a major study of African Americans. Subsequently, the academic institution leaders demonstrated their enthusiasm for and commitment to the idea. They indicated that it was something that needed to be done and what better schools to do it

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Jackson State University, TC, and the UMMC were challenged by the scope of the JHS objectives concerning their physical, fiscal, and human resources at a time of continuing social change in Mississippi in the mid to late 1990s. Where would a study of this size be located? How would the funds be divided? Who would get the most? Which institution would be the lead? Furthermore, whose voice would speak for the participants? With different research infrastructures and funding formulas, how would the three different institutions collaborate to implement the JHS?

Jackson State University (formerly Jackson State College) was founded in 1877 by the American Baptist Home Mission Society to serve African American students in the region. In 1940 the state of Mississippi assumed support of the college and assigned to it the mission of training teachers. By the 1950s, the curriculum was expanded to include elementary education, language arts, physical education, and music. The college continued to expand its offerings and, in 1974, changed its name to Jackson State University. In 1979, the Board of Trustees of State Institutions of Higher Learning officially designated JSU as the Urban University of the State of Mississippi. As Mississippi’s urban university, Jackson State University emphasizes providing public service programs designed to enhance the quality of life and seek solutions to urban problems in the physical, social, intellectual, and economic environments.4 Over the years, JSU steadily developed its research portfolio. In 1994, Dr. Lyons created a cabinet-level office for research and appointed Dr. Bettye Ward Fletcher as the vice president for research and development. Students from JSU were active in the Civil Rights Movement (1960–1964). In March 1961, following the attempt by nine TC students to use the “whites only” Jackson Public Library, 50 JSU students were beaten and arrested for their peaceful march in solidarity with the “Tougaloo Nine.” Mounting anger over civil rights set the stage for deadly dramas on Lynch Street in Jackson. The street cut through the JSU campus, where demonstrations occurred in 1963 following the assassination of Medgar Evers, the Mississippi field secretary of the National Association for the Advancement of Colored People.5 There were periodic conflicts between law enforcement and African Americans in the area. Tragically, in 1970, police killed two students and wounded 12 during an antiwar protest at Jackson State College (now JSU).6 Such incidents fed the consistently simmering coals of distrust and discrimination. The University of Mississippi, the oldest of the three institutions, was founded in 1844 in Oxford, Mississippi, and is often called “Ole Miss.” It is the oldest public institution of higher learning in the South. In 1903 a two-year medical school was established on the Oxford campus. Graduates earned a certificate and went out of state to complete their Doctor of Medicine degrees. In 1950, the Mississippi legislature enacted a law to create a four-year medical school. Therefore, the health sciences campus of the University of Mississippi opened in Jackson in 1955. Over the years, other health professional schools were added: nursing, health-related professions, dentistry, and graduate studies.7 The UMMC is the only academic medical center in the state. Its mission includes health care and treatment, health professional education, and research. In 1962, James Meredith became the first African American student admitted to “Ole Miss.”8 The UMMC hired its first African American faculty member in 1965. Thomas Patterson, in 1970, was the first African American graduate student to earn a PhD in microbiology, and in 1972, James Oliver was the first African American medical student to earn an MD degree.9 The UMMC had a long history of research focused on the cardiovascular system. Dr. Arthur Guyton, head of the Department of Physiology and Biophysics at the UMMC (1948–2003) was famous for, among other achievements, his studies of cardiac output and its relationship to peripheral circulation. He

demonstrated the need of the body tissues for oxygen as the regulating factor in cardiac output and “The Guyton Curves” as the basis for understanding the physiology of circulation.10 Issues around race were a perpetual challenge. Even after the Civil Rights Era, discussing race brought with it a level of discomfort that was sometimes surprising to an unsuspecting white person. “Race was a central issue in the study. We discussed race often and in depth. We had discussions that were sometimes uncomfortable, sometimes surprising to me on a personal level growing up as a white person in this state. I wasn’t aware of the pain, of the difficulty, and some of the challenges living in this culture and environment as an African American” (Daniel Jones, MD Interview April 6, 2006). All too easily, words exchanged among colleagues with good intentions could be interpreted as threatening and racially charged by the African American or non-African American listener. Collaborative Planning The Planning Committee (Table 1) set the stage for collaboration across the institutions by hosting planning and information sessions at each of the three institutions on a rotating basis during the Planning Phase (fall 1996–fall 1997) and the Feasibility Phase (April 1997–November 1999). Dr. Daniel Jones was appointed by Dr. Conerly to serve as the chairperson of the Planning Committee, and he was also appointed by the NHLBI as principal investigator of the Feasibility Phase. Dr. Jones was a UMMC cardiologist and the director of the Hypertension Clinic. The success of the JHS Planning Committee in developing a fundable proposal was facilitated by both local and national expertise, guided by the decisions made by the institutional leaders on the rationale for division of the scope of work among them. Their decisions were based on the individual expertise of each institution under the premise that it would work better if each institution would be responsible for what it did best. The UMMC was best suited to be the resource for medicine, medical physiology, and clinical epidemiology. It would serve as the Examination Center and be responsible for conducting participant interviews and clinical examinations. Best suited to serve as the epidemiological, biostatistical and database management resource, JSU would serve as the Coordinating Center and be responsible for protocol development, training, pretesting, and quality control. TC would serve as the Undergraduate Training Center. It would be responsible for establishing an academic program in public health and epidemiology that would include both classroom training and field experience through the JHS and would be capable of attracting minority students to careers in public health.11 Local working groups, representatives of all three institutions—national leaders with expertise in population-based studies, minority health, and cardiovascular disease—and the NHLBI staff worked together to identify scientific questions. In April 1997, TC hosted a JHS Scientific Planning Group meeting on “Research Priorities for the Study of Cardiovascular Diseases in African Americans.” Invitees included professors of internal, clinical, and preventive medicine and epidemiology at Columbia, Loyola, and Tulane Universities and the University of Michigan.

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Table 1. Jackson Heart Study Collaborative Planning Committee: Local Experts. • Dr. John Hall, Chairperson University of Mississippi Medical Center Department of Physiology, who chaired the Scientific Directions Working Group • Dr. Bettye Ward-Fletcher, Vice President for Research and Development and Graduate Dean, Jackson State University • Dr. Felix Okoje, Assistant Vice President for Research and Development at Jackson State University • Dr. Mary Lou Mohamed, Epidemiologist with joint appointments at the University of Mississippi Medical Center and Jackson State University • Dr. Joseph Cameron, Director Jackson State University Bridges to the Baccalaureate Program at Jackson State University • Dr. Beverly Hogan, Director of the Owens Health and Wellness Center at Tougaloo College • Dr. Bam Mehrotra, Professor of Chemistry at Tougaloo College • Dr. Daniel Jones, Professor of Medicine, Cardiologist, and Director of the Hypertension Clinic at the University of Mississippi Medical Center • Dr. Sharon Wyatt, Professor of Nursing at the University of Mississippi Medical Center

Local participants included a cardiologist, family practice physician, and Study Planning Committee participants from JSU, TC, and the UMMC, along with representatives from the NIH Office of Research on Minority Health and the NHLBI. The agenda included an overview of prospective studies and NHLBI field sites, such as the Framingham Heart Study (FHS) and the Honolulu Heart Study; an overview and objectives of the JHS; potential roles of JSU, TC, and the UMMC; collaborative research partnerships; NIH support; potential obstacles to success; building capabilities in epidemiologic research; timelines; and next steps.12 The Planning Group derived seven research priorities and potential research questions related to hypertension, congestive heart failure, renovascular disease, traditional cardiovascular disease risk factors, genetic epidemiology, novel imaging techniques, and sociodemographic factors. In November 1997, JSU hosted a Symposium on Cardiovascular Disease during which the plenary sessions were focused around the same proposed JHS research priorities and potential research questions posed at the April 1997 planning meeting. Breakout sessions comprised of content experts, scientists, and educators from the UMMC, the University of Alabama at Birmingham, University of Michigan, Loyola University, Columbia University, and Tulane University, and the FHS explored more deeply the topics of hypertension and target organ damage; risk factors for ischemic and hemorrhagic stroke; left ventricular hypertrophy, remodeling, and cardiac dysfunction; renovascular disease, a cause and consequence of cardiovascular disease; traditional and nontraditional risk factors and cardiovascular disease; and socio-cultural issues and cardiovascular disease in African Americans. As a result of

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the symposium and related work, the JHS Committee for Improving Scientific Output compiled a comprehensive “Jackson Cohort Statistical Report.” A press conference announcing the JHS was planned to coincide with the November 1997 Symposium. The UMMC Vice-Chancellor Wallace Conerly, Jackson State University President James Lyons, and TC President Joe Lee stood together and announced the creation of the JHS to the Jackson community and the nation. It was the country’s first single-site observational, epidemiological study of cardiovascular disease in African Americans. Meeting Feasibility Phase Objectives The Planning Phase (1996–1997) flowed seamlessly into a two-year Feasibility Phase (1997–1999) during which the Jackson Heart Study identified a principal investigator and met seven specific objectives required for approval of the initial funding period of 1999–2004 (Table 2). The three institution leaders were committed to the JHS. They acknowledged the individual strengths of each institution and how, as partners, they complemented each other. Their collaborative strength was a unique and powerful asset for initiating and continuing the JHS. The three institutional partners, because of their political and social histories, recognized the need to bring more African Americans into research. Vice-Chancellor Conerly, President Lyons, and President Lee all had the same idea about the criteria for the selection of the leader for the JHS. To address creditability with the science and with the community, they wanted the best African American cardiologist and cardiovascular research person that they could find in the nation to lead the JHS. Since this was a population-based study, they needed someone with experience in epidemiology and cardiovascular disease. Therefore, the basic credentials of the person they sought as the leader for the JHS was an African American cardiologist with research experience in epidemiology. In May 1998, the UMMC hired Dr. Herman A. Taylor as the JHS project director. Subsequently, he was appointed by the NHLBI as the study’s principal investigator. An African American, a native of Birmingham, Alabama, a cardiologist, and an associate professor at the University of Alabama, Birmingham, in the Department of Cardiovascular Disease, Dr. Taylor also served as attending physician in cardiovascular disease and internal medicine at the University of Alabama Cooper Green Hospital and Birmingham Veterans Administration Medical Center. Dr. Taylor graduated from Harvard Medical School and Harvard School of Public Health. His cardiovascular disease research and publications focused on left ventricular dysfunction, coronary heart disease, preventive cardiology, health disparities, and risk factors and causes of heart disease in African Americans. Dr. Taylor arrived in Jackson in May 1998, at the juncture of the planning and feasibility phases. Even while learning his new environment and getting settled in Jackson, he hit the ground running, focusing his energy and expertise on helping the steering committee to meet the objectives of the feasibility phase. The endpoint of the feasibility phase was a scientifically rigorous research proposal that fulfilled the criteria for progression to a full-scale study. Decisions regarding whether the JSU should go forward were based on the scientific soundness

Table 2. Objectives of the Feasibility Phase. • Establish a data coordinating center at Jackson State University capable of carrying out the functions of a typical coordinating center in multicenter epidemiological studies, including design of study protocols, preparation of data collection forms, and manuals, training, and certification of technicians, subcontracting for laboratories and reading centers, arranging steering committee and advisory board meetings, receiving data and monitoring data quality, and analyzing data in preparation for publication. • Create an undergraduate training center in public health and epidemiology at Tougaloo College capable of attracting minority students to, and preparing them for, careers in epidemiology and public health. • Develop and conduct a participant retention survey designed to identify potential roadblocks to participation in the Jackson Heart Study. Investigators would then use the results from the survey to develop a community mobilization plan. • Develop the initial protocol for the full-scale Jackson Heart Study. • Submit plans for the feasibility and full-scale studies for review by an external National Heart, Lung, and Blood Institute advisory board. • Conduct the participant retention survey and refine the initial protocol as necessary for the full-scale study. • Analyze and publish existing Jackson Atherosclerosis Risk in Communities Study data in collaboration with other Atherosclerosis Risk in Communities Study investigators.13

of the research proposal and the demonstration of willingness and ability to conduct the study. The institutional representatives were active participants in all phases of preparing the study proposal, which fostered buy-in and commitment. Each institution led specific activities required to meet the feasibility objectives. Establishing a Data Coordinating Center Jackson State University provided evidence of progress toward successfully establishing a JHS Data Coordinating Center, which included plans to house it within the JSU Office of Research and Development and hiring a biostatistician, leadership for the Data Management Unit, and leadership for the Scientific Administration Unit. Further evidence included a partnership with the Collaborative Studies Coordinating Center at the University of North Carolina at Chapel Hill to assist in developing protocol documentation, data collection instruments, and a data management system. The Collaborative Studies Coordinating Center also assisted with training Field Center staff and provided guidance in areas such as physical requirements appropriate for a Data Coordinating Center, preparation of Office of Management and Budget submissions, subcontracting with reading centers, and understanding Atherosclerosis Risk in Communities (ARIC) data and documentation.11 Importantly, the logistical issue of the interface between the JHS and the ARIC Study in the potential overlap of events surveillance data, classification, and annual follow-up contacts needed to be addressed to the mutual satisfaction of both. The Atherosclerosis Risk in Communities Study protocol and procedure manuals served as the starting point for JHS manuals since comparability between the two studies was desired in many areas. Other evidence of progress included completing the sampling plan, launching theJHS website, organizing and assigning development of the JHS Manuals of Operation, and obtaining NHLBI approval of the data collection instruments. Creating an Undergraduate Training Center TC documented the successful development of an Undergraduate Training Center by chronicling achievements such as conducting

an Outreach Workshop for 37 high school students over one month in summer 1999 titled “Investigations in Life Sciences” and conducting a successful Six-Day Epidemiology Course in summer 1997 for approximately 60 students and organizing a second one for summer 1999. TC also prepared selected faculty to teach courses related to public health, biostatistics, and epidemiology to JHS Scholars, recruited five JHS Scholars, organized the JHS Scholars’ curriculum, and recruited a coprincipal investigator who held a PhD in epidemiology. Developing and Conducting a Participant Retention Survey The purpose of the Participant Retention Survey was to identify potential roadblocks to participation in the JHS, which investigators would then use to develop a community mobilization plan and refine the initial protocol as necessary for the full-scale study. Between 1997 and 1999, a team of investigators, led by Coinvestigator Dr. Sharon Wyatt, UMMC School of Nursing faculty, conducted a Participant Recruitment and Retention Study that identified barriers and facilitators to participation in biomedical research. The results were used in selecting and training recruiters and clinic staff, and in refining the initial protocol and community mobilization plan. Developing the Initial Protocol A team of epidemiologists, clinicians, investigators, and directors of other National Institutes of Health/National Heart, Lung, and Blood Institute population-based studies worked side-by-side with the JHS Scientific Planning Group, comprised of national experts and experienced local scientists and investigators from the three partnering institutions, as well as practicing physicians from the Jackson community, to develop a proposal that met the NIH/NHLBI requirements. Personnel for the UMMC Examination Center were hired per budgeted positions. They included a study coordinator and investigators who were engaged with consultants in developing the study protocol that was adopted by the JHS Steering Committee.

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Dr. Robert Garrison, Jackson Heart Study Science Officer (2005-2009) and former National Institutes of Health/National Heart, Lung, and Blood Institute Project Officer for the Framingham Heart Study, described the corollary between the Jackson Heart Study and the Framingham Heart Study, “There is an epidemic in African Americans that is very similar and parallel in terms of the Framingham epidemic of 1950. “The reason the Framingham Heart Study was established was that white men were dying from coronary heart disease, and nobody seemed to know why. The situation in Mississippi at the turn of the century was similar among African Americans; African Americans were dying in unprecedented numbers from cardiovascular disease, and nobody seemed to know why” —Robert Garrison, PhD

Examination Center personnel were represented in every working group, where they provided medical expertise and related input. Analyzing and Publishing Existing Jackson Atherosclerosis Risk in Communities Study Data The study coordinator and investigators who were hired by the UMMC Examination Center to develop the initial JHS protocol participated, simultaneously, in writing groups with ARIC Study investigators and consultants to produce manuscripts using ARIC Study data. In December 1999, the planning and organizing staff of the JHS met with the JHS Observational Studies Monitoring Board in Bethesda, Maryland, to assess progress toward meeting the criteria for progression from the Feasibility Phase to a full-scale study. In June 2000, the NHLBI subsequently granted the JHS full-scale study status. Focus on a Common Goal In addition to commitment and will, the most influential facilitator of inter-institutional collaboration was the opportunity for the three institutions to focus on the common goal to reverse cardiovascular disease trends in Mississippi by building institutional capacity to research minority health and increasing the number of minority students who enter careers in public health and epidemiology. There were champions at the NIH/NHBLI who thought that research on cardiovascular disease in African Americans had to be done, and it had to be done in the South. They also believed that it had to be done using the FHS methodology in a location such as Jackson, Mississippi. Dr. Robert Garrison, JHS science officer (2005–2009) and former NIH/ NHLBI project officer for the FHS, described the corollary between the JHS and the FHS, “There is an epidemic in African Americans that is very similar and parallel in terms of the Framingham epidemic of 1950.

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The reason the FHS was established was that white men were dying from coronary heart disease, and nobody seemed to know why. The situation in Mississippi at the turn of the century was similar among African Americans; African Americans were dying in unprecedented numbers from cardiovascular disease, and nobody seemed to know why” (Robert Garrison, PhD Interview, October 2006). Capacity-Building for Research in Minority Health The Feasibility Phase gradually transitioned into the full-scale study during 1999 and 2000. Jackson State University, TC, and the UMMC collaboratively planned and facilitated a conference titled “Capacity Building for Research in Minority Health,” which was held on May 3-5, 2000. Many nationally and internationally noted scientists, investigators, federal government health officials, and other experts gathered at the Ramada Inn in Jackson. They presented epidemiological strategies and overviews of community-based studies. Their comprehensive topics included: the need for infrastructure plus will,14 the history of medical ethics and perspectives on disparities in minority recruitment and involvement in health research,15 building capacity for health research at minority institutions,16 ethical challenges in community-based research,17 research capacity and closing the health gap,13 developing community capacity and improving health in African American communities,18 and building a gateway to promote cardiovascular health research in African American communities.19 The postconference articles by the presenters provided JHS investigators with validation for evolving collaborative activities and guidance for the future. Research and Policy Infrastructure and Governance of the Study The JHS’s dynamic governance model demonstrated the research and policy infrastructure components described in the foundational

contributions for building research capacity to address cardiovascular disease and cardiovascular health among the African American population through the JHS. A Steering Committee appointed by the NHLBI was responsible for the overall planning and conduct of the JHS. The Steering Committee, chaired by the JHS principal investigator/director, was uniquely comprised of two representatives from each of the partnering institutions, two representatives from the community, the field site director, and the NIH/NHLBI project officer and contract officer. The presidents of the three partnering institutions provided input into the strategic direction and leadership for the study through their participation or representation on a Presidents’ Advisory Council. The JHS principal investigator/ project director had a dual reporting line, one to the NHLBI and one to the Presidents’ Advisory Council. He was assisted in the day-today operation of the study by the Director’s Council, comprised of the coinvestigator from each of the three institutions who was the head of the Jackson Heart Study Center located at that institution: the Examination Center at the UMMC, Undergraduate Training Center at TC, and Data Coordinating Center at JSU (1999–2013). Beginning in 2013, there were five centers; the two additional centers were the Community Outreach Center and the Graduate Training and Education Center at JSU. The UMMC also administered two centers—the Data Coordinating Center and Field Center (formerly Examination Center)—while the center at TC was assigned the expanded title of Undergraduate Training and Education Center (UTEC). The title of the principal investigator’s leadership team was changed to the Cross-Center Coordinating Council. In the contract renewal (2018–2024), a new JHS partner was added; the MSDH was charged to develop a Community Engagement Center, building on previous JHS community outreach efforts. Building on the previous Undergraduate Training and Education Center and Graduate Training and Education Center experiences, a second Graduate Training and Education Center at the UMMC was initiated. The governance structure was thus expanded to include the initial partnering institutions (JSU, UMMC and TC) in addition to a fourth partner, the MSDH. A major challenge to the JHS infrastructure was the fact that it was a single-site study administered by a partnership of three distinctly different higher education institutions, and a state agency. Loyalty to institutional policies, procedures, and position expectations at times complicated the picture. In 2007, the development and use of a JHS Employee Handbook bridged the gap between the JHS requirements and those at each of the participating institutions. It was designed as a complement to, not a replacement for, the institution-specific employee handbooks. The Employee Handbook included a complementary performance management system that outlined how performance would be managed within the JHS in a manner consistent with the performance management policies of each of the participating institutions. The JHS performance management system was designed to ensure that staff understood expectations and how their jobs supported the overall functioning of the JHS, identify opportunities for professional development to help them grow and perform their JHS responsibilities more effectively, and increase accountability. The

Employee Handbook and Performance Management System were approved by the respective human resource managers of the partnering institutions and endorsed by the institutional heads. Team-building and communication were ever-present challenges to developing and maintaining a viable multifaceted infrastructure that unified a widely diverse staff of 72 individuals, inclusive of senior investigators, junior investigators, associate directors, managers, coordinators, researchers, and administrative support staff. With the help of consultant expertise in human resource management and organizational development, the JHS leadership team identified critical success factors, leadership priorities, and leadership team commitments grounded in the JHS’s mission, vision, and values. This approach optimized the natural strengths and capacity potential of each institutional partner, while simultaneously building research capabilities for and with minority investigators. The JHS vision addressed the determination to make a positive difference in the heart health of African Americans by envisioning the JHS as “transforming a history of heart disease among African Americans to a legacy of heart health through research, and by translating and disseminating research results; involving the community in research approaches and preparing young African American/minority students for careers in health sciences.” The JHS vision addresses a historical perspective on inequities among groups, research through engaging the community, empowerment education through translation and dissemination of research results, and educational pipeline programs to increase the number of researchers from minority groups engaged in biomedical, biobehavioral, and related research. The JHS mission addressed both cardiovascular disease prevalence and disparity. It includes the JHS values, “Since there is a greater prevalence of cardiovascular disease among African Americans, the purpose of the JHS is to explore the reasons for this disparity and to uncover new approaches to reduce it. In addressing its mission, the JHS values accountability, commitment, competency, collaboration, excellence, respect, teamwork, and trust.” The JHS mission and values address standards of ethical conduct in biomedical and behavioral research grounded in a fundamental respect for persons, beneficence, and justice. The JHS values embrace partnership building among and within JSU, TC and the UMMC; between the partnering institutions and the community; and within the Jackson community. The JHS mission, vision, and values provide the study with a foundation upon which to ground decision-making, commit to team-building and communication, and operationalize lasting policies and practices of collaboration among three unlikely partners from 1996 to the present. n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800 010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College

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(HHSN268201800014I), the Mississippi State Department of Health (HHSN268201800015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services. References 1. TC: About Tougaloo; Our History. 2020. Accessed March 27, 2020. https://www.tougaloo.edu/about-tougaloo-college/our-history. 2. Vision 2020 Tougaloo College: Transformation through Innovation, Strategic Plan 2017–2020. Accessed March 27, 2020. https://www.tougaloo.edu/sites/ default/files/page-files/TougalooCollegeVision2020.pdf. 3. Arsenault R. Freedom Riders 1961 and the Struggle for Racial Justice. Oxford University Press; 2006.

12. Hall JE, Jones DW, Ward-Fletcher B, et al. Jackson Heart Study symposium on cardiovascular disease in African Americans. Am J Med Sci. htps://doi. org/10.1161/01.CIR.0000114834.85476.81Circulation. 2004;109:672–693. 13. Sullivan LW. Research capacity and closing the health gap. Am J Med Sci. 2001;322(5):264-268. 14. Pearson TA. Capacity for research in minority health: The need for infrastructure plus will. Am J Med Sci. 2001;322(5):243-247. 15. Seto B. History of medical ethics and perspectives on disparities in minority recruitment and involvement in health research. Am J Med Sci. 2001;322(5): 248-252. 16. Ruffin J, Flagg-Newton JE. Building capacity for health disparity research at minority institutions. Am J Med Sci. 2001;322(5):253-258. 17. Marshall PA, Rotimi C. Ethical challenges in community-based research. Am J Med Sci. 2001;322(5):259-263. 18. Raczynski JM, Cornell CE, Stalker V, et al. Developing community capacity and improving health in African American communities. Am J Med Sci. 2001;322(5):269-275. 19. Becker DM, Tuggle MB, Prentice MF. Building a gateway to promote cardiovascular health research in African American communities: Lessons and findings from the field. Am J Med Sci. 2001;322(5):276-281. PMID: 11876188.

4. Jackson State University. 1877: Jackson State University; History. Accessed March 27, 2020. http://www.jsums.edu/ourhistory/. 5. Williams MV. Medgar Evers, Mississippi Martyr. University of Arkansas Press; 2011:201. 6. Mississippi Department of Archives and History. Telling Our Stories: Museum of Mississippi History and Mississippi Civil Rights Museum. University Press of Mississippi; 2017. 7. The University of Mississippi. About UM; History. Accessed March 27, 2020. https://olemiss.edu/aboutum/history.html. 8. The Integration of Ole Miss. Accessed March 27, 2020. https://www.history. com/topics/black-history/ole-miss-integration. 9. Quinn J. Promises Kept: The University of Mississippi Medical Center, Jackson. University of Mississippi Medical Center. Distributed by University Press of Mississippi; 2008:87, 92, 93.

Author Information Jackson Heart Study, Program Official, National Heart, Lung, and Blood Institute, Bethesda, Maryland (Nelson). Professor of Medicine, Director, Cardiovascular Research Institute, Morehouse School of Medicine, Atlanta, Georgia (Taylor). Professor of Medicine, University of Mississippi Medical Center, Principal Investigator and Director, Jackson Heart Study, Jackson, Mississippi (Correa). Professor Emerita of Biology, Former Principal Investigator, Jackson Heart Study, Undergraduate Training and Education Center, Tougaloo College, Tougaloo, Mississippi (Srinivasan). Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson).

10. Guyton AC. The University of Mississippi Medical Center: A legacy of achievement. Accessed March 27, 2020. https://www.umc.edu/UMMC/About-Us/ History/Arthur-Guyton/Guyton-Overview.html. 11. Sempos CT, Bild DE, Manolio TA. Overview of the Jackson Heart Study: A study of cardiovascular diseases in African American men and women. Am J Med Sci. 1999;317(3):142-146.

RightTrack

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CLINIC LOCATIONS:

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The Jackson Heart Study Choir

Jackson Heart Study Staff During the 10th Anniversary Celebration

Dr. Sharon Wyatt Leads a Small Group Discussion at the 2010 Conference

Mary Wilson, JHS Receptionist

Dr. Bettye-Ward Fletcher and Ms. Clara Fortner

SCIENCE OF MEDICINE

Recruitment of Participants in the Jackson Heart Study FRANCES C. HENDERSON, EDD; SONJA FUQUA, RN, PHD; MARY CRUMP, RN, DRPH; KAREN WINTERS, RN, PHD; DONNA ANTOINE-LAVIGNE, PHD Introduction and Background Recruitment, retention, community outreach, and health education in the Jackson Heart Study (JHS) were dynamic activities linked by multiple features such as facilitators, trust, partnerships, continuity, commitment, and empowerment. Recruiting over 5000 Jackson-area African Americans to participate in a longitudinal study of risk factors associated with cardiovascular disease was such a looming challenge that the National Institutes of Health/National Heart, Lung, and Blood Institute and the Office of Minority Health required a feasibility study of participant recruitment, retention, and adherence among the prerequisites for funding the JHS. Since Jackson was the site of the all-African American cohort of the Atherosclerosis Risk in Communities (ARIC) Study,1 some community members were familiar with the processes of recruitment and research participation. Participants in the Study

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were uniquely prepared to describe their experiences of participating in a research protocol. They were well able to identify barriers and facilitators of recruitment, retention, and adherence, and suggest strategies for use in the JHS. Jackson-area African Americans who chose not to participate in the ARIC Study were also prepared to describe their reasons for not participating, perceived barriers, and desired facilitators of recruitment, retention, and adherence, and strategies from their perspectives as previous nonresearch participants. While some researchers espoused pessimism about the ability to recruit and retain adequate numbers of African Americans, others stressed that while it may be difficult, it could be achieved with adequate planning and resources. A systematic approach for recruitment of over 5000 Jackson, Mississippi, African Americans in the largest epidemiological study of an African American cohort ever undertaken emerged from a process of attention to the rigor of the science simultaneous with hearing and responding to the voices of the community.

greatest potential for successful recruitment and retention, Dr. Wyatt identified four domains of facilitators and barriers; Participant, Organization, Protocol, and Community Involvement became the model that she and her team used to design a 138-item structured questionnaire that guided investigators’ interviews of a total of 125 Jackson-area African American men and women, some of whom were participants in the ARIC Study and some of whom were not.

Dr. Sharon Wyatt Leading a Small Group Discussion at the 2010 Scientific Conference

A Community-Driven Approach by a Multidisciplinary Team Dr. Sharon Wyatt, a nurse researcher at the University of Mississippi Medical Center’s (UMMC) School of Nursing, was appointed to conduct the Recruitment, Retention, and Adherence Study by Dr. Daniel Jones, then Principal Investigator for the Feasibility Phase of the JHS and a physician/investigator in hypertension at the UMMC. Dr. Wyatt selected a racially and ethnically diverse, multidisciplinary team with representatives from the UMMC, Jackson State University, and Tougaloo College (the three partnering institutions for the JHS) and external consultants to assist her in collecting, analyzing, and interpreting the study’s data. The study was titled the Participant Recruitment and Retention Study (PRRS). Dr. Wyatt invited several ARIC Study participants to partner with her as a part of the Jackson-area community network engaged with the PRRS team. The importance of culturally sensitive strategies and communication approaches based on building trust with participants and the community could not be overemphasized in Jackson, given the history and the perpetual struggle for power, equality, fairness, voice, and representativeness among the African American community, and between Jackson’s African American and White communities. The PRRS investigative team was compelled to identify a model that would address both the demands of sound science and the demand for a genuine voice from the Jackson-area African American community. The quest for good science required that the recruitment and retention plan was grounded in scientific methodology with measurable outcomes, generalizability, and reproducibility. A community-driven approach and the Participant Organization Protocol Community Involvement conceptual model provided the background necessary to conduct the Study.

The description of the respondents as a group was based on the ten Participant factors identified in the model: 1) socio-demographic characteristics; 2) health status; 3) health practices; 4) trust and satisfaction with health care; 5) family health history; 6) religious coping, religious and community involvement; 7) racism and discrimination; 8) facilitators of participation; 9) health attitudes; and 10) research attitudes and beliefs. Most of the persons interviewed were between 55 and 74 years of age and had lived in their current location for more than 25 years. The respondents indicated that the greatest participantrelated facilitator of taking part in research was having the support of the people in their household and that the greatest barriers were related to conflicts with work schedules and the possibility of losing pay. They also indicated that their beliefs that research would help them, their families, people in general, and Black people were important to their decision to participate, or not, in biomedical research.2 The Organization component of the model included continuity, commitment, and compatibility. Commitment referred to the research environment, that is, a positive ambiance for staff and participants. Approximately two-thirds of the respondents identified a professional approach with a friendly attitude as important contributors to participation. The organization concept of compatibility included cultural sensitivity and a match in the ethnic affiliation between staff and participants. Just over one-third of the respondents indicated that initial contact by someone of the same gender and race was important to their participation in the research.2 Continuity in terms of ongoing contact between staff/ participants was reflected in both commitment and compatibility.

A Participant, Organization, Protocol, and Community Involvement Model for Identifying Facilitators and Barriers to Research Participation

Protocol factors included design, accommodation, quality assurance, and control. Practical applications covered informed consent, attention to participant needs, and feedback to participants and staff. Not understanding what was to be done and/or the consent process was reported as important to the decision to participate or not in the study by two-thirds of those interviewed. In the area of accommodation, more than one-third, but not quite half, indicated that some type of incentive would make it more likely for them to participate in the JHS. If the protocol required up to two hours to complete the clinic examination, most interviewees would be willing to do so. Over one-half indicated they would have no difficulty in arriving at the clinic between 7 a.m. and 8 a.m. for examinations to begin. As an assurance of the quality of study information, nearly all of the persons interviewed indicated that receiving personal or health care provider reports of the findings of their examinations would be important in deciding to take part in the JHS.2

In the process of developing an authentic approach of inclusion and partnering with the Jackson community that provided the

The three Community Involvement factors were mobilization, partnership, and trust. Mobilization included awareness, knowledge,

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Dr. Sonja Fuqua and Jackson Heart Study Recruiters

and ownership of the study; partnership involved ongoing communication, input, and leadership; and trust included attitudes and beliefs about health and research. Most persons interviewed indicated that having seen or heard positive information about the study on television, radio, or print media was very important in deciding to take part in the JHS. Over three-fourths reported that receiving help, if needed, in obtaining medical assistance was an important partnershipbuilding factor in deciding whether or not to take part in and stay in the study. A majority of the persons interviewed reported that the belief that the study was likely to hurt or harm them was important to their decisions to complete examinations or return for future visits. Overall, approximately two-thirds of the 125 persons interviewed indicated that they would participate in the JHS, as compared to about onefourth, who were not sure. Less than 10% said they would not be likely to participate.2 Dr. Wyatt aligned the factors that participants identified as particularly important to participate in the JHS with the four components of the model: participant, organization, protocol, and community involvement (Table 1). From the participant perspective, the support of family and friends, being in good health with good or

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excellent quality of life, and believing that research participation could result in benefits for one’s self, family, and humanity, in general, were key findings. It was important to respondents that the research organization, in this case, the JHS, respect their time by conducting clinical examinations within the promised time frame. Identity and familiarity were both aligned with the research environment in which participants would favor an environment with recruiters who were the same gender as the participants being recruited, and who were from the same neighborhood as participants. Dr. Wyatt aligned the community involvement component of the model with participants’ responses about public support of the study by health care providers and the visibility of the study through the media. Using Unstructured Interviews to Understand Jackson-Area African Americans’ Experiences of Taking Part or Not in Biomedical Research An unstructured interpretive interview was designed to elicit an understanding of the experiences of taking part, or not, in a large research study such as the JHS. This qualitative segment of the PRRS was based on principles and practices of interpretive phenomenology

Table 1. Participant, Organization, Protocol, Community Involvement Model Components Aligned with Interviewees’ Responses to What Was Important for Them to Participate in the Jackson Heart Study. For the Participant (P): • Support of family and friends.

In an Organization (O) where:

Using a Protocol (P) which provides:

Where Community Involvement (CI) includes:

• Clinic examinations do not exceed the promised time limit.

• Assistance with obtaining medical care is provided, if needed.

• Hearing about the study via the media and health care providers.

• Good or excellent quality of life and satisfaction with quality of life.

• Recruiters and participants are of the same gender.

• Two-hour study examinations over two days (when the total exam exceeds four hours).

• Public support of the study from family and health care providers.

• Experience with a health care provider who listens.

• Recruiters who are from the community or neighborhood of participants.

• Good or excellent self-rated health.

• Beliefs that research participation results in benefits for “myself, my people, my family, and humanity.” • Concerns about experimentation and congruence with religious beliefs as important considerations in participating.

that move beyond traditional scientific approaches of knowledge generation to the shared meanings and practices within a given group. “Common practices and shared meanings reveal, enhance, or extend the understanding of human experience as it is lived.”2 The experiences of interest to the investigative team were those of ARIC Study participants who had persisted in their participation since the inception of the study in 1989; those who began the study but chose to discontinue their participation, as well as members of the Jacksonarea community who were not affiliated at all with the study. A total of 31 persons participated in the individual interviews, and 81 persons participated in one of 10 group interviews.2 In the unstructured interviews, following the consenting process, the interviewer asked the individual and focus group participants: “Thinking about your understanding of the JHS and any experiences you may have had with medical or other research, please tell me in your own words what you think would be important to your participating or not in such a study.”2 The interviewers used a variety of probes to encourage the interviewee to continue to share his/her experiences and expectations about participating in research. They audio recorded the interviews and had the audiotapes transcribed by a professional transcriptionist. Members of the interpretive team, using interpretive phenomenology, read and interpreted each interview. In the discussions that followed, the team discussed their interpretations to the point of consensus or redundancy. To enlighten their ethical and historical perspectives on oppression, disparities in minority recruitment, and participation in health research and related issues, the team immersed themselves in reading and discussing selected African American literature by prominent authors such as Richard Wright,3 Margaret Walker-Alexander,4 Cornell West,5 James Baldwin,6 bell hooks,7 Reuben Warren,8 W.E.B. DuBois,9 and Martin Luther King Jr.10 These discussions illuminated

• Having little fear of hurt or harm from taking part in the research. • Belief in the importance of finding out about heart disease even if personal identification was required.

the lenses through which the team interpreted individual and focus group interviews. The in-depth study of the transcripts of the interviews revealed three patterns that communicated the common experiences of Jackson-area African Americans regarding participating in research: 1) Interpreting the Concerns of the JHS Family: Safeguarding Political and Moral Concerns, 2) Gathering the JHS Family: A Community-Driven Model for Recruiting and Retaining, and 3) Friends of the JHS: Growing, Cultivating, and Building Community Partnerships. Each of the three patterns uncovered two to three themes11 (Table 2). To overcome barriers to participation, which were clearly identified as hinging on trust, the team addressed participants’ political and moral concerns, reenvisioned recruiting and retaining participation as gathering and sustaining, and reached beyond the confines of the study to garner and mobilize partnerships throughout the JHS. Inviting a Council of Elders and Selecting and Training Recruiters Dr. Wyatt and the Recruitment and Retention Director, Dr. Sonja Fuqua, invited 12 ARIC participants who offered to help with promoting the study in the Jackson community to serve as a Council of Elders. In this role, they helped simplify the wording on documents such as brochures, data collection forms, and the informed consent form, and stuffed envelopes with media messages for mass mailings to the community. The Council of Elders advised study staff on an as-needed basis and participated in role-playing activities related to interviewing staff. Selecting and training recruiters reflected sensitivity to participant factors as well as attention to the desired reputation of the JHS as an organization that hired recruiters who were dedicated to the study and its importance. Dr. Wyatt and Dr. Fuqua selected a group of Jackson community residents who were

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Table 2. Unstructured Interpretive Interviews: Patterns and Themes. 1. Interpreting the Concerns of the Jackson Heart Study Family: Safeguarding Political and Moral Concerns

2. Gathering the Jackson Heart Study Family: A Community-Driven Model for Recruiting and Retaining

3. Friends of the Jackson Heart Study: Growing, Cultivating, and Building Community Partnerships

1.1 Trust, Truth, Honesty and Double Consciousness

2.1 Participants and Community as Coinvestigators

3.1 Growing Interest and Creating Alliances

1.2 Validity and Culturally Appropriate Research Protocols

2.2 Inviting Participation

3.2 Building Paths to Participation

1.3 Intent and Beneficence and Informed Consent

2.3 Welcoming and Staying: Creating a Place and Space for the Jackson Heart Study

honest, friendly, sincere, personable, caring, passionate about the JHS potential, informed, and convincing as initial applicants for the recruiter positions. To discern these characteristics, the recruiter selection interviews included a role-play during which applicants conducted a mock recruitment interview with a member of the Council of Elders. Dr. Wyatt and Dr. Fuqua observed the interaction and gathered input from the Council of Elders member on her/his assessment of the applicant’s characteristics and interpersonal skills. Subsequently, five recruiters were hired: four females and one male. All were African American, varying in age from mid-20s to late 40s, with a minimum of a bachelor’s degree; three had a master’s degree. Dr. Wyatt and Dr. Fuqua developed and implemented an extensive training program that provided initial and ongoing preparation of the recruitment team. The recruiters received initial preparation in an eightweek didactic and practical training program that was designed to be implemented in four phases: 1) orientation to the study, 2) orientation to recruitment procedures, 3) inviting research participation, and 4) participating in a field practicum. Each recruiter was a participant in a complete home induction interview and baseline clinical examination to gain firsthand experience from the perspective of a participant with the requirements, time invested, and associated feelings to better inform their behaviors as recruiters. Using input from the PRRS, Dr. Wyatt and Dr. Fuqua prepared a manual of operations that was given to each recruiter that included key points on inviting and gathering potential participants for the JHS. Methods for enhancing listening and trust-building skills, developing interpretative skills, and providing participant support throughout the recruitment process were stressed in the unique one-week segment that focused on inviting research participation and communicating with potential participants. The final report of the PRRS was used as a learning guide, and Council of Elders members coparticipated with recruitment leaders in guiding recruiters through the participant stories and interpretations. Fears, concerns, the desire for knowing and connecting, being respected, and feeling safeguarded were explored. As well, recruiters were guided in the process of telling and interpreting stories to illustrate how their lived and learned experiences prepared them to be interactive listeners. Recruiters also completed a two-day workshop focused on cultural diversity and the realization of personal sensitivities. The

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conversation was focused on the complex implications of the “insider/outsider” phenomenon, that is, whether membership in a particular ethnic group makes a person an “insider” to the study population. Recruiters explored personal experiences of being an insider or outsider within their communities and how these might inform their activities as recruiters. Successful completion of the field practicum resulted in certification for JHS data collection. To earn certification, the recruiter was required to conduct three acceptable, director-observed, in-field recruitment interviews; the initial one was with a Council of Elders member and two others were with potential participants identified following the sampling protocols. The field practicum also included successful debriefing with the recruitment director to assess the recruiter’s familiarity with and understanding of the intent of the questionnaire items, and overall ability to handle the recruitment interview with confidence, accuracy, and confidentiality. As well, a passing score on a written protocol examination was required. To assess recruiters’ continued competence, annual written examinations were required, and Dr. Fuqua periodically accompanied recruiters on randomly selected visits. At least 10% of household induction interviews were directly observed. In weekly team meetings, Dr. Wyatt and Dr. Fuqua presented study protocol updates. The team as a whole discussed the updates along with recruiting strategies and opportunities. Recruiters also used this time to debrief and interpret each others’ recruiting experiences. Consultants who participated as members of the interpretive team for the PRRS, on occasion, served as cogroup leaders/presenters to guide debriefings and interpretations and to make presentations on topics such as communication techniques. During the presentation on communication techniques, recruiters were encouraged to engage their whole being in the process of receiving and sending messages, using nine (versus five) senses: hearing, seeing, feeling, sensing, touching, smelling, tasting, discerning, and intuiting. They were encouraged to identify their unique communication skills to provide professional support throughout the recruitment process by holding regular collaborative feedback sessions among themselves to share experiences and strategies that worked, which could expand their individual skills. They were also encouraged to keep a journal of these selected experiences.

The importance of culturally sensitive strategies and communication approaches based on building trust with participants and the community could not be overemphasized in Jackson given the history, and the perpetual struggle for power, equality, fairness, voice and representativeness among the African American community, and between Jackson’s African American and white communities.” —Frances C. Henderson, EdD

In reality, the recruitment process was dynamic, as further described by the Director of Recruitment and Retention Sonja Fuqua, PhD, in an interview (September 2006):

“We had good people who wanted to do the job and did it with the conviction of trying to make a difference in the health of our people.”

There were many changes made throughout the process of recruitment: changes in protocol, changes in assignments, changes in how we do things in general. Among the main lessons we learned was that we have to meet people where they are. It takes much self-motivation to get up and go from door to door and meet strangers, never knowing whom you will meet or how they will react to you and not have your spirits blighted by one disappointment or one dog at a fence or a situation where you wish you could do something but you cannot. A description of the recruitment process on paper does not in any way reflect the work involved in the recruitment process.

Recruiters worked as a team with a mission, not just individuals with jobs. According to one of the original five recruiters, in the focus group interview (September 2006), the recruiting process was a mission:

In the same interview (September 2006), Dr. Fuqua further shared what worked best when making repeated visits to capture missed contacts: When a contact attempt was made and no one answered the door, the recruiter would leave a business card and message saying, “Sorry I missed you, JHS” attached to the doorknob. For a second missed visit, a small gift such as flower seeds, tea bags, hot chocolate, and a JHS magnet would be left on the doorknob with the “Sorry I missed you, JHS” message. Recruiters discovered that messages with a small gift attached seemed to get more attention from potential contacts. Recruiters’ Stories Recruiters shared many stories and their interpretations of the meanings of many of their day-to-day recruiting experiences. Recruiters identified the blending of their unique characteristics as a key contributor to their success as recruiters in a focus group interview (September 2006): “We are all African American, and we have that in common, but there was so much about us that was different, but the difference seemed to blend.”

“We all had something to bring to the table.”

For me, it was a mission because this is the last frontier for our people to conquer, and the reason I say this is the last frontier for us to conquer as a people is because of the health disparity. We got out there, we protested, and we championed civil rights and human rights, and we were able to accomplish the fact we were equal. We should have equal access, and we should have an equal voice and all that. However, the health disparity proves that we are not equal yet because even before we can enjoy the fruit of our labor and our success in terms of education, we are dying much younger, even if we get old, life is not quality. Recruitment Practices and Protocol Informing the Jackson community about the JHS was driven by personto-person contacts. It included dissemination of information about the study in places where the community regularly gathered, like churches. Some information was disseminated to the community, in verbal and printed form. The community-driven motto that emerged from the community itself, “A legacy of health,” was the theme of the main recruitment brochure, posters, flyers, news media articles, and scripts for use as talking points. Flyers, brochures, and newsletters about the JHS were placed in doctors’ offices and on a display stand in the Jackson Medical Mall, just outside the entrance to the study location. Focusing the circulation of information about the JHS in targeted segments of the sampling area for a designated period, closely synchronized with follow-up, door-to-door contacts by a team of recruiters, turned out to be a well-choreographed collaboration between the Partnership for Health Education and Awareness through the Coordinating Center at Jackson State University and the Recruitment Unit affiliated with the Examination Center at the UMMC.

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Recruiter assignments were based on sample subgroups (ARIC, random, family, and volunteer) and geographic area, taking into account each recruiter’s unique qualities and expertise, prior experiences, and familiarity with the geographic region. The recommended times for initial visits, such as late afternoon or early evening on weekdays or a Saturday, were included in the protocol. Similarly, there were guidelines for follow-up visits and initially several tries before a decision was made, upon reviewing contact attempts, to cease further contact efforts. Inclusion criteria for eligibility were household members who were between the ages of 35 and 84 at the time of the interview and selfidentified as African American. The recruiter introduced herself/himself and explained the purpose and importance of the JHS, and provided letters of support from community leaders, study newsletters, and related media. The recruiter stressed the confidentiality of the collected data and the voluntary nature of the study. Once a potential participant was contacted, the goal was to conduct the home induction interview as soon as possible; it was best if it could be done immediately. Enrollment in the study was not official until the participant completed the home induction interview and kept her/his clinic appointment. Recruitment Results: The JHS Sample Although three counties in the Jackson Metropolitan Statistical Area (Hinds, Madison, and Rankin), were identified as recruitment sites, most of the sample (83%) came from Hinds County, 11% from Madison County, and 6% from Rankin County. The sample contained four groups: ARIC (22%), random (17%), family (31%), and volunteer (30%). In terms of gender and age, 64% of the total JHS sample was female, and 36% was male. Nearly 90% of the participants were between the ages of 35 and 74. The final sample size was 5306 participants recruited over 42 months from September 2000 through March 2004. There were 17,343 initial contact attempts, which resulted in 11,669 potential enrollees. Recruiters conducted home induction interviews with 6181 persons, and the 5306 who completed the baseline clinical examination were official JHS participants.12 A systematic approach for recruitment and retention of over 5000 Jackson, Mississippi, African Americans to the largest study of this kind ever undertaken emerged from a process of attention to the rigor of the science simultaneous with hearing and responding to the voices of the community. The community/investigator partnership that emerged provided a foundation for cohort retention, community outreach, and health education. Successful recruitment of the JHS cohort provided hope for a sometimes skeptical and fearful community that their involvement could make a difference in generations to come, and thus leave a legacy of health in the place of a long history of heart disease. Building a bridge between the study and the community and building trust, one pebble at a time, became the beacons for all who chose to join. n

HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN26820 1800014I), the Mississippi State Department of Health (HHSN26 8201800015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services. References 1. Atherosclerosis Risk in Communities. Accessed March 29, 2020. http://www2. cscc.unc.edu/aric/. 2. Wyatt SB, Al-Fadhli H, Andrew M, et al. Community-Driven Model of Recruitment. [Unpublished] The Jackson Heart Study: A Final Report of the Jackson Heart Study Participant Recruitment and Retention Study. University of Mississippi Medical Center; 1999:38-40. 3. Wright R. 12 Million Black Voices. Basic Books; 1941/2002. 4. Walker M, Freeman RL. Margaret Walker’s For My People: A Tribute. University Press of Mississippi; 1992. 5. West C. Race Matters. Vintage Books; 1994. 6. Baldwin J. The Fire Next Time. Vintage Books; 1963. 7. Hooks B. Yearning, Race, Gender and cultural politics. Cultural Politics. South End Press; 1990. 8. Warren RC. Health education and black health status. In: Braithwaite RL, Taylor SE, eds. Health Issues in the Black Community. Jossey-Bass Publishers; 1992: 241–254. 9. Du Bois WEB. The Souls of Black Folks. Dover Publications; 1903/1994. 10. King ML. The Measure of a Man. Pilgrim Press; 1959/1968. 11. Wyatt SB, Al-Fadhli H, Andrew M, et al. Community-Driven model of recruitment: The Jackson Heart Study: A final report of the Jackson Heart Study Participant Recruitment and Retention Study. University of Mississippi Medical Center; 1999:129–130. 12. Fuqua SR, Wyatt SB, Andrew ME, et al. Recruiting African American research participation in the Jackson Heart Study: Methods, response rates and sample description. Ethn Dis. 2005;15(4 suppl 6):S6-18–S6-29.

Author Information Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson). Director of Clinical Quality Mississippi Primary Health Care Association, Jackson, Mississippi (Fuqua). Consultant, Jackson Heart Study, Jackson, Mississippi (Crump). Associate Director, Field Center Jackson Heart Study, Jackson, Mississippi (Winters). Principal Investigator, All of Us Research Project, Jackson-Hinds Comprehensive Health Center, Jackson, Mississippi (Antoine-LaVigne).

Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I,

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Henderson

Fuqua

Crump

Winters

AntoineLaVigne

Health Education Materials

Ms. Amel Mohamed Speaking to Participants at Jackson Medical Mall

Ms. Cheryl Nelson speaking

Dr. Clifton Addison, Dr. Mary Crump, Dr. Daniel Sarpong

Jackson Heart Study Staff and Others at a Presentation at the Jackson Medical Mall

SCIENCE OF MEDICINE

Retention of Jackson Heart Study Participants, Community Outreach and Health Education FRANCES C. HENDERSON, EDD; SONJA FUQUA, RN, PHD; MARY CRUMP, RN, DRPH; KAREN WINTERS, RN, PHD; DONNA ANTOINE-LAVIGNE, PHD

Introduction and Background Retention and recruitment of participants are inextricable components of building a community-based study such as the Jackson Heart Study (JHS). In fact, retention begins with recruitment. The Participant Recruitment and Retention Study (PRRS) conducted during the Feasibility Phase (1997–1999) of the JHS provided the model that was used to plan and implement retention, community outreach, and health education. Specific facilitators of retention were gleaned from 125 respondents to 138 questions in unstructured interviews conducted to gather data on facilitators and barriers to participation in research.

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Respondents indicated that the most significant participant-related facilitator for taking part in research was having the support of the people in their household and that the most significant barriers were related to conflicts with work schedules and the possibility of losing pay. They also indicated that their beliefs that research would help them, their families, people, in general, and black people, in particular, were important to their decision to participate, or not, in biomedical research.1 The organization component of the model included continuity, commitment, and compatibility. Commitment referred to the research environment, that is, a positive ambiance for staff and participants.

important partnership-building factor in deciding whether or not to take part in and stay in the study.1 Retention of JHS Participants, Community Outreach, and Health Education

Ms. Cheryl Nelson Speaking to Participants

Approximately two-thirds of the respondents identified a professional approach with a friendly attitude as important contributors to participation. The organization concept of compatibility included cultural sensitivity and the match in ethnic affiliation between staff and participants. Just over one-third of the respondents indicated that initial contact by someone of the same gender and race was important to their participation in the research.1 Continuity in terms of ongoing contact between staff/participant was reflected in both commitment and compatibility. Protocol factors included design, accommodation, quality assurance, and control. Practical applications covered informed consent, attention to participant needs, and feedback to participants and staff. Not understanding what was to be done and/or the consent process was reported as important to the decision to participate or not in the study by two-thirds of those interviewed. In the area of accommodation, more than one-third, but not quite half, indicated that some type of incentive would make it more likely for them to participate in the JHS. If the protocol required up to two hours to complete the clinic examination, most interviewees would be willing to do so. Over one-half indicated they would have no difficulty in arriving at the clinic between 7 a.m. and 8 a.m. for examinations to begin. As an assurance of the quality of study information, nearly all of the persons interviewed indicated that receiving personal or health care provider reports of the findings of their examinations would be important in deciding to take part in the JHS.1 The three community involvement factors were: mobilization, partnership, and trust. Mobilization included awareness, knowledge, and ownership of the study; partnership involved ongoing communication, input, and leadership; and trust included attitudes and beliefs about health and research. Most persons interviewed indicated that having seen or heard positive information about the study on television, radio, or print media was very important in deciding to take part in the JHS. Over three-fourths reported that receiving help, if needed, in obtaining medical assistance was an

Continuity, commitment, and compatibility in staff selection and staff development activities played a key role in cohort retention. The Examination Center Manager, Dr. Mary Crump, sought staff that was committed to the study, compatible with the participants, and likely to continue in the position. It was critical to have staff who exhibited a personality that inspired trust. The interview process included roleplaying scenarios designed to assess potential staff members’ sensitivity in responding to a variety of challenging situations. Dr. Crump scheduled monthly staff meetings that provided staff with opportunities to express concerns regarding issues that contributed to retention. Staff meetings often included training sessions on ways to communicate effectively and respectfully with participants who displayed challenging personalities. Monthly staff meetings promoted a sense of ownership of the process of retaining participants in the study and assisting participants in keeping their clinic appointments. Staff shared practical ideas and helped to generate realistic retention strategies that could be implemented at the staff level. Sensitive and appropriate staff responses were beneficial in establishing and maintaining trust and encouraging participants to return for subsequent examinations. Genuine Respect, Appreciation, and Accommodation of Participants’ Needs Successful cohort retention required that all investigators and staff who interacted with participants communicated a connection and feeling of caring, concern, and genuineness. Genuine respect, appreciation, and accommodation to participants’ needs emanated from a study culture that embraced a positive and culturally sensitive environment for staff and participants among the facilitators of cohort retention. The recruiter made the first connection with the participant when conducting the initial interview and scheduling the appointment for the clinic visit, and the next person the participant communicated with was the clinic receptionist, who called to confirm the day/date and time of the appointment. Phone calls to participants were made the evening before their appointment and the morning of their scheduled clinic appointment. Some participants reported they really appreciated the reminder calls. Upon arrival at the clinic, generally, the same clinic receptionist was the first person to greet the participant in person, thus building upon a bond that was begun during the phone conversation. The warm, friendly, and genuine greeting by the clinic nurse was crucial to the participants’ comfort level for the examination at hand and for remaining in the study. After the clinic nurse explained what to expect during the visit, participants had the opportunity to ask questions and discuss their feelings regarding what was expected from them, thus communicating genuine respect for participants and their feelings.

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Additional indicators of genuine respect for participants included: housing the study in a building that reflected the caring of the JHS as a clean and welcoming space, living up to the promise of respecting participants’ time, respectful recognition of personhood including direct eye contact and calling the participant by name with the proper title and salutations, making time and opportunity to listen to participants’ stories, and placing a “suggestion box” in a prominent location in the clinic so that participants could comment on their visit and staff interactions. The principal investigator, coinvestigators, and staff took every possible opportunity to express gratitude to participants for their participation. Examples of frequently expressing appreciation to participants included: sending birthday, Christmas, Kwanza, or other holiday cards to all study participants each year; sending a thank-you letter following each study contact; giving participants tangible incentives of appreciation for their efforts; and providing each participant with a certificate of membership in the JHS cohort, which was suitable for framing. Accommodation to participants’ needs included asking about their needs for transportation, child- care, or caregiver relief when making an appointment for the clinical examination. Transportation needs were addressed in several ways; taxi service was available to participants who lived within the city of Jackson with the use of a voucher provided through an agreement between the study and various taxi companies. There were other subcontracted services for participants who lived outside the city limits.

Dr. Karen Winters Standing at Table of Participants

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The inclusion of a social worker as a staff member in the Examination Center was a unique accommodation that assisted participants in need. The social worker referred those participants who did not have a primary care provider to the appropriate services and negotiated with health and social service providers for special access for participants to meet health and social service needs. Clinic staff was trained to assess indicators of participants’ needs for social services and to refer them to the social worker. Additional accommodations to participant’s needs included: making available flexible scheduling of appointments to accommodate participants’ busy schedules; including culturally appropriate language in JHS documents that resulted from continuing conversations between investigators, staff, and the community; and providing personalized information, emotional support, or caregiver assistance through a network of volunteers. Because participants, on occasion, moved to another geographic region, accommodations were made for participants to schedule their follow-up clinical examination when they were again in the Jackson area. Participants could also schedule examination appointments well in advance by using the study’s website. Ongoing Communication and Maintaining Contact with Participants Ongoing communication and contact between staff and participants were key components of continuity and commitment, which were hallmarks of the organizational culture of the study. Strategies included follow-up on missed appointments and multiple, ongoing, simultaneous

multimedia approaches. When a participant missed an appointment, the staff was alerted to the need for a follow-up call. Follow-up calls were most effective when participants were contacted the same day. Clinic staff and the social worker assumed this responsibility. Phone calls investigators made to hard-to-reach participants communicated to participants that the study had a continuing interest in their wellbeing. For participants who worked during the day and were hard to reach during work hours, the social worker made phone calls to them in the evenings to schedule initial appointments or remind them of missed appointments.

“I stuck with it because I found out some things, you know, the numbers we should be concerned about, you know, and how you know to control certain things, and like, they were saying, you know, you got a chance to really get tested for a lot of different things, you know, and find out how that affects you and whatnot.”2

Benefits to Participants and Their Families

The JHS provided a rare opportunity to chronicle the facilitators to the retention of an all-African American cohort in a study of cardiovascular disease risk factors and cardiovascular health factors. Data were gathered from a variety of sources: participants’ exit interviews, staff/ participant interactions, and Examination Center staff exploration of what worked and what did not work in terms of facilitators to participant retention. Strategies that worked included split clinic visits, if requested; meal vouchers for clinic appointments five hours or longer; and the ability to come for the clinical examination on “work time.” Study staff negotiated with employers to allow employees time off to have their clinical examinations done without losing pay, on the condition that the employee presents a letter of documentation to the employer from the JHS. Saturday clinics that did not conflict with local football games worked, as did the provision of an end-of-clinic-visit report for participants to take with them to share with their health care providers. These were strategies that worked in addition to reminder cards and calls, and transportation and child-care, if needed.

Nearly all of the PRRS interviewees indicated that receiving personal or health care provider reports of the findings of examinations would be important in deciding to take part in the JHS. The consent form that participants signed at the beginning of each examination included the opportunity to grant permission for the Examination Center to send results to their primary healthcare provider. The protocol included specific guidelines for a cascade of alerts for abnormal findings. Some participants expressed their appreciation for alerts related to incidental findings and the early medical care they received as a result of the notifications. The procedures that were conducted to collect data regarding risk factors for cardiovascular disease were the same procedures used for routine health screening. The approximate cost of these procedures was $4000. Primary care providers would sometimes request copies of the 12-lead electrocardiogram, echocardiogram, cardiac magnetic resonance imaging and/or computed technology scan reports to assist them with the evaluation of changes in participants’ health status over time. In a focus group interview related to continuing to be a part of genetic studies, participants were asked: “What made you want to continue with the JHS?” Responses included: “I liked the complete workup they gave me, and actually, when they find something, I can go to my physician.”2

Benefits to participants and their families encouraged long-term retention in the study. Facilitators of Participant Retention

A study of the lived experiences of participants who were part of the JHS for over 15 years revealed experiences that contributed to retention. Data gathered from 52 participants in focus group and in-depth interview sessions indicated that the fundamental factor from the participant’s perspective was the interpersonal relationship with the clinic staff and the ability to establish a trusting relationship. Study participants shared their experiences upon entering the clinic and participating in the clinical examination: “When entering the clinic, the courtesy of the staff and how you were made to feel welcome and being treated like a gentleman and a scholar. There was the positive attitude of the staff.3 “It seems like most people I met were very professional, very caring. They seemed concerned about my health. They explained everything.”3 “The same familiar faces and staff made you feel comfortable; you had trust.”3 “The JHS provided you with information you could understand.”3

Dr. Correa Speaking to Participants at Jackson Medical Mall

The shared experiences and findings provide evidence to support the meticulous attention given in 1996–1997 to the participant’s perspective, the organizational culture of the study, and the

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planning and implementation of the protocol and community involvement in all aspects of the study, thus dispelling the myth of Jackson-area African Americans’ nonparticipation in research. In fact, the participation of the all-African American cohort in the study has contributed to their willingness to participate in other related research studies. Community Outreach and Health Education The community involvement components—mobilization, partnership, and trust of the conceptual model for participant recruitment, retention, and adherence—were reflected in the dayto-day activities of the Community Partnership and Outreach Office. Community mobilization was a critical component of getting the word out to the community about the JHS and the opportunity to be a participant. In 2000, the National Institutes of Health/ National Heart, Lung, and Blood Institute (NIH/ NHLBI) revised the focus of community mobilization within the Data Coordinating Center at Jackson State University, from promoting awareness of the study in the community to community outreach and education. The inclusion in an epidemiological study of an office that focused on community outreach and education was one of the unique features of the JHS. The Jackson State University Data Coordinating Center organized the Partnership for Community Awareness and Health Education Office, later called the Community Partnership and Outreach Office, and charged it with developing and sustaining community partnerships. To build alliances between the community and the study, Jackson State University hired Community Partnership and Outreach staff, which consisted of a coordinator, health educator, outreach specialist, and administrative assistant, who had deep roots in, and passion for, the Jackson community. Community Partnership and Outreach staff expanded many of the community mobilization activities already initiated, added new ones, and used different knowledge, skills, and abilities to build and sustain community trust in the study. They put to work their knowledge related to the specific needs of the community, skills in relationship-building with formal and informal leaders, and abilities to identify and support best practices to address existing and potential challenges and barriers. Additionally, the coordinator, Dr. Antoine-LaVigne, and her staff grounded the process in the principles of Community-Based Participatory Research. The Community-Based Participatory Research approach involves community members, organizational representatives, and researchers in all aspects of the research process. Further, it allows all partners to contribute their expertise and share decision making and responsibilities. Partners learned from each other. Researchers learned the needs of communities and became familiar with community networks while community members became more astute about research and acquired research skills.4 Jackson State University and its community were proud and passionate about being chosen to promote awareness of the JHS in the community

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Mr. Jermal Clark and Dr. Adolfo Correa and to lead outreach and education activities that addressed cardiovascular disease and cardiovascular health among the Jacksonarea African American population, which had the potential for a major impact on other populations. Being chosen had different meanings for different people. According to one study participant, being chosen made her feel honored and special, while in an interview, Mr. Jermal Clark (June 2006) shared his perspective as one of the two community representatives on the JHS Steering Committee 2008–2013: “The JHS will put Jackson on the map, and it will be a point of pride for Mississippi.” Being chosen inspired pride, ownership of the study and a passionate dedication to its success. Developing and Sustaining Partnerships The Community Partnership and Outreach Office systematically developed and sustained partnerships with churches, media outlets, community-based organizations, and local businesses. Partnering with Churches: Meeting with various Ministerial Alliances to present information about the JHS and encourage their support by presenting information about the study at churches during Sunday services, Bible study sessions on Wednesday evenings, meetings of Senior Ministry Groups on weekday mornings, and gatherings of Women’s Missionary Societies, and other groups on Saturdays were among the approaches used to develop or sustain partnerships with churches. JHS recruiters, clinic staff, and others took the awareness message to their own churches. The strategy was to ask the pastor’s permission to say a few words to the congregation at the appropriate time. Pastors would often allow five to ten minutes for the informant to talk about the study; describe the benefits, eligibility, and recruitment process; and distribute an informational flyer. In appreciation for the time to disseminate the message to the church’s congregation, the study

Continuity, commitment and compatibility in staff selection and staff development activities played a key role in cohort retention. Staff who were committed to the Study, compatible with the participants and likely to continue in the position were sought. It was critical to have staff who exhibited a personality that inspired trust. The interview process included role playing scenarios designed to assess potential staff members’ sensitivity in responding to a variety of challenging situations.” —Mary Crump, RN, DrPH; The Examination Center Manager

representative would also present the pastor with a gift bag containing selected promotional items such as a tee-shirt, key chain, pen, or other items. Additionally, the Community Partnership and Outreach Office staff provided churches with study updates and health education messages to be disseminated in, or along with, the church bulletin. This strategy became an excellent model for keeping the JHS awareness message visible among church congregations on an ongoing basis. The effectiveness of messages in the churches was evident in excerpts from interviews of participants who were asked, “What were some of the reasons you decided to participate in the JHS?” For example: “I couldn’t even remember how I got in the study. I was thinking that it was maybe through my church that somebody maybe talked, and then we went into the fellowship hall, and I signed up.”2 “I found out about it through church…and she was asking people to participate, and I signed up”2 “I only share this because I participated in the heart study. I went back to my church, and I told people how important it was. And, I said, this is free, and you need to go. And, I told everybody there how important it is that you go and that you take advantage of it. And so, I think we can promote it once we have gone through it.”2 Partnering with Media: The Community Partnership and Outreach Office was very sensitive to the fact that different media formats should be designed to reach specific target populations. The media played a major role in disseminating messages to promote the awareness of the study to the Jackson community-at-large. The goal was to keep the JHS visible in the Jackson community, which was done using paid media messages as well as free public service announcements and taking advantage of opportunities for coverage in area newspapers. In 2013 the Coordinator of Community

Partnership and Outreach Office estimated that JHS heart-healthy messages and articles reached approximately 49,000 individuals through partnerships with the Jackson Advocate and Mississippi Link. The Study initiated a newsletter, The JHS Heartbeat, in 1999. It was published biannually (winter and spring) and was targeted to a broad audience. Participants included the Jackson community-at-large; JHS investigators, and staff. The JHS Heartbeat was yet another media vehicle that demonstrated the study’s commitment to providing the broader community with ongoing information about its findings. Included in the newsletter were study findings and related health education and health promotion messages, heart-healthy recipes, announcements of opportunities for participation in training and other community events, and other items of importance and interest to participants and the community. The newsletter was disseminated via mail-out to participants, on a newspaper stand outside the main entrance to the study location, in the Examination Center waiting area, and on the website. Circulation was approximately 6000 per issue. Participants valued the newsletter because of the information it contained, as stated by one participant: “Each time I got the newsletter, I read through it, and it was amazing the numbers and things of that sort.”2 Partnering with Community-Based Organizations, and Local Businesses: The Community Partnership and Outreach Office developed long-term partnerships with community-based organizations such as 100 black Men of Jackson, and Canton, Mississippi, and with health-related agencies and organizations such as the Mississippi State Department of Health, American Diabetes Association, American Heart Association, and the Diabetes Foundation of Mississippi. They partnered in cosponsoring health fairs at various community locations, including business sites like Walmart, and schools within the Jackson Public School District. By partnering with businesses, such as barbershops and beauty shops

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in the African American community, the Community Partnership and Outreach Office designed informational and health educational flyers to initiate conversations between the customers and operators about heart health and the JHS. They reached over 100 shops with this approach. Outreach through JHS Gatherings At least three times each year, participants, community, investigators, and staff gathered in the public meeting space of the Jackson Medical Mall, which was the location of the study facilities, for shared colearning and celebratory activities. Planned gatherings of the cohort contributed toward facilitating collaborative, equitable partnerships and provided an opportunity to express appreciation to the cohort for their participation and continued support of the study. The Celebration of Life gathering held on the last Saturday in February was designed to celebrate the life and legacies of the African American family and highlight the importance of the study. Distinguished speakers during this event have included the following: Dr. David Satcher, the nation’s 16th Surgeon General; Dr. Rodney Hood, former president of the National Medical Association; Dr. Vanessa Northington-Gamble, chair of the Tuskegee Syphilis Study Legacy Committee, which in 1997 secured a presidential apology for the treatment of African American patients from then-President William J. Clinton. The potential benefits of providing the Jackson community with opportunities to see and hear nationally prominent leaders who were advocates for eliminating health disparities, addressing social inequality and unethical practices in medical research, and seeking health equity were immeasurable assets in promoting the integrity and importance of the study and building research capacity with the community. The unique JHS Community Monitoring Board met annually in June for a half-day. It provided an opportunity for participants, the community, investigators, and staff to come together as equal partners to share ideas, offer recommendations, and participate in seminars designed to initiate discussion of issues related to the conduct of the study. The agenda included a Report on the State of the Study by the Principal Investigator/Director, who provided highlights on new findings, publications, and implications of study results for participants’ heart-healthy behaviors. Additional speakers were invited to address topics of interest, such as: “Safeguards in Genetics Research: Policy and Ethics,” “Ethics in Community-Based Research,” and “Reflections and Renewal: Where Do We Go from Here?” The program was conducted as an open forum that encouraged interactive community participation. Following the forum, the audience was invited to participate in various break-out session seminars. During these seminars, community members advocated for the specific needs of the community. Examples included population-specific health education and promotion resources, speakers for community events, and specific culturally appropriate print materials. The first JHS Birthday/Family Reunion was held on the last Saturday of September in 2001, in honor of the first participant who was recruited to the study on September 26, 2000. It was held

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annually and included: a guest speaker; greetings from the NHLBI Project Officer, Ms. Nelson; a message from the principal investigator; musical and/or dance entertainment; and often a participatory physical activity. Study participants and representatives from the community always participated in this event, sometimes in roles such as Mistress or Master of Ceremony; presenters on topics, such as their testimonials about the study; or as leaders of the physical activity, prayers, remarks, and/or comments. Additionally, the JHS Scholars and the Subcommittee on Translating Research into Practice and Prevention displayed posters and disseminated flyers on heart health information. Every gathering provided the opportunity to shower participants with an appreciation for their participation, and each one left with several tokens of appreciations, such as pens, pads, buttons, refrigeration magnets, mugs, tote bags, and similar memorabilia emblazoned with the JHS logo so that there was some reminder of the study in the homes of all participants. An often-heard message from members of the Council of Elders was to keep the JHS visible in every home. An additional family-oriented highlight was the sharing of a meal at each gathering. Gatherings of participants, community, investigators, and staff promoted colearning as an empowerment process that attended to social inequalities and built a long-term commitment to the study. Heart Health Education Planned and Delivered through Organizing Community Health Advisor Networks A tightly interwoven thread of the JHS was conducting research and disseminating findings that served the community in which it was carried out. As a community-based study, investigators expected the study to identify risk factors for cardiovascular disease that could be modified by day-to-day health practices that would also serve to maintain cardiovascular health. Community Health Advisor Networks seemed to hold the key to planning and delivering empowerment education to benefit the Jackson community and beyond. A Community Health Advisor Network is a group of natural helpers in a closely-knit community, brought together by their common interest in helping others with health, health-related, and social services as well as quality of life issues on a volunteer basis. Community Health Advisors, trained individuals who comprise a Community Health Advisor Network, are distinguished by their understanding of community culture, which allows them to provide culturally appropriate, informal, and spontaneous assistance to community members, and to establish vital links between health care providers and the community. The idea of packaging health education as a gift illuminated the focus on self-empowerment, long-term sustainability, and perpetuation of healthy lifestyles, and the potential for decreasing cardiovascular health disparities. In an interview, the Health Educator for the Community Partnership and Outreach Office, Ms. Cynthia Smith, shared that in 2001 the staff began thinking about what they could give back to the community, and what emerged was the idea of Community Health Advisor Training. Through Dr. Evelyn Walker, the NHLBI Field Site Director for the study, the Community Partnership and Outreach Coordinator was

made aware that the National Heart, Lung, and Blood Institute, the National Council of La Raza, and the University of Southern Mississippi had piloted a Community Health Advisor Network training program that was modified for the African American culture. It was a 10-week heart disease prevention course accompanied by a publication from the NHLBI: “With Every Heartbeat is Life: A Community Health Worker’s Manual for African Americans.”5 Subsequently, Ms. Smith and Dr. Walker participated in one such training program at the University of Southern Mississippi, after which they planned and implemented the JHS Community Health Advisor Network. The goals of the JHS Community Health Advisor Network included coordinating and implementing health promotion activities and conducting training and other presentations in local communities, increasing heart health literacy, and promoting hearthealthy behaviors. These goals incorporated the CommunityBased Participatory Research principles of addressing social and public health issues that are relevant to the health and wellness of the community as well as sharing the research findings with the community. Some of the modifiable risk factors included in the training were smoking cessation, sodium intake, physical activity, managing blood pressure and cholesterol, diet, and nutrition. Participants for the training program were recruited from communities within Hinds, Rankin, and Madison Counties. Subsequently, the Community Partnership and Outreach Office established five Community Health Advisor Networks in Bolton/ Edwards, Canton, Clinton, Jackson, and Pearl. Community Health Advisor Network activities and events included: communicating heart health messages in communityfriendly language, conducting and participating in health fairs, walks, forums, training, town hall meetings, and other similar activities. Community Health Advisors also participated in refresher training periodically. As of August 2018, the Community Outreach Center (formerly the Community Partnership and Outreach Office) had 118 community health advisors. An Outreach Coordinator provided guidance and support to the Community Health Advisor Network presidents and provided health education information, but left planning and implementing activities to the community health advisors. As a result, each Community Health Advisor Network developed autonomously. According to a conversation with Outreach Coordinator Ms. Darcel Odom in February 2015, each of the Community Health Advisor Networks has a community activity that they call their own since it is something they started and tend to do repeatedly: One thing about each of the five Community Health Advisor Networks is that they all have something that they own. The Jimmie Lewis Walkathon in Bolton/Edwards is an annual event. Clinton works with the four C’s (Clinton Christian Community Center); they have things they do with seniors. Then, in Canton, they have started a men’s health fair, for men only, at the fire station; the fire chief is involved, that is

why they have it at the fire station. In Rankin County, they have an annual health fair rotated between two churches, Mt. Elam and Sweet Rest. Furthermore, you have the Jackson Community Health Advisor Network. At one time, they had a mother’s brunch, and we are working with them to get them back to where they were, owning something. We want each Community Health Advisor Network to have their events that they own. We want them to be self-sufficient in their own community. Six members of the Bolton/Edwards and Clinton Community Health Advisor Networks combined, and two members of the Canton Community Health Advisor Network shared some of the things they enjoyed about being a JHS Community Health Advisor, and how their involvement has changed their health behaviors. Community Health Advisors said that they enjoyed monitoring their health, coming together to help each other, communicating with and caring about each other, and helping to make members of their community aware of their health. Some of the changes in their health behaviors as a result of their participation in the Community Health Advisor Network included: they stopped smoking, drinking sodas, and eating red meat and pork; they cut back on fried foods, read labels in the grocery store, and participated in regular exercise. The Community Health Advisors enjoyed planning and implementing health fairs and community walks, and conducting health education sessions in their churches. The following testimonial from a focus group interview (February 2012) sums up what all of the Community Health Advisors shared, in one way or another, about changes in their health behaviors and their commitment to increasing awareness of heart health in their communities: I am more aware of my health, more aware of my blood pressure, more aware of my weight, more aware of my exercise; you cannot teach something you’re not doing yourself. So, I try to maintain my weight and keep my blood pressure under control. But, I’m really more aware of my family and try to encourage the people at my church to do better by talking about heart health and blood pressure and so forth. A Community-Driven Approach that demonstrated genuine respect for the voices of the community, combined with the scientific rigor brought to the JHS by a multidisciplinary team, guided successful retention, community outreach, and health education. Between September 2000 and March 2004, the JHS recruited 5306 African American men and women participants. In 2013 after completion of the third clinical examination, the JHS retention rate was 78%. As of 2016, approximately 118 Community Health Advisors were active participants in providing health education through five Community Health Advisor Networks. Numerous partnerships were made and sustained, while the pride and passion of participants, investigators, staff, collaborators, and stakeholders flourished. A model that addresses participant needs, organizational culture, protocol clarity, and community involvement is a model that works for recruitment, retention, community outreach, and health education in the JHS. n

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References 1. Wyatt SB, Al-Fadhli H, Andrew M, et al. Community-Driven model of recruitment. [Unpublished] The Jackson Heart Study: A final report of the Jackson Heart Study Participant Recruitment and Retention Study. University of Mississippi Medical Center; 1999:38-43. 2. Walker ER, Nelson CR, Antoine-LaVigne D, et al. Research participants’ opinions on genetic research and reasons for participation: A Jackson Heart Study focus group analysis. Ethn Dis. 2014;24(3):290-297. 3. Crump MA. African American experiences in a longitudinal research study: The Jackson Heart Study case: A pilot study. PhD dissertation. Jackson State University; 2017.

Health (HHSN268201800015I) contracts from the National Heart, Lung , and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung , and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services.

4. Israel BA, Eng E, Schultz AJ, Parker EA eds. Methods for Community-Based Participatory Research for Health, Edition 2. Jossey-Bass; 2013.

Author Information

5. National Heart, Lung, and Blood Institute. With every heartbeat is life: A community health worker’s manual for African Americans. National Institutes of Health; 2007. NIH publication 08-5844. Accessed March 29, 2020. https:// www.nhlbi.nih.gov/health-topics/all-publications-and-resources/everyheartbeat-life-community-health-workers-manual

Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson). Director of Clinical Quality Mississippi Primary Health Care Association, Jackson, Mississippi (Fuqua). Consultant, Jackson Heart Study, Jackson, Mississippi (Crump). Associate Director, Field Center Jackson Heart Study, Jackson, Mississippi (Winters). Principal Investigator, All of Us Research Project, Jackson-Hinds Comprehensive Health Center, Jackson, Mississippi (Antoine-LaVigne).

Henderson

Fuqua

Crump

Winters

AntoineLaVigne

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Dr. Adolfo Correa Dr. Herman Taylor

Dr. Henderson and Participants at a Health Education Program During the 10th Anniversary Celebration

At podium: Dr. Herman Taylor. Seated left to right: Dr. Bettye Ward-Fletcher (JSU), Dr.Â Cecil Burchfiel (NIH), Dr. Bam Mehrotra (Tougaloo), Dr. Daniel Jones (UMMC)

SCIENCE OF MEDICINE

The Jackson Heart Study: Data Acquisition, Analysis, and Dissemination of Findings KAREN WINTERS, RN, PHD; ADOLFO CORREA, MD MPH; MARIO SIMS, PHD; PRAMOD ANUGU, MS; YUAN I. MIN, PHD; LYNETTE EKUNWE, PHD; CHERYL NELSON, MSPH; FRANCES C. HENDERSON, EDD Introduction Acquiring data, or data acquisition, in the Jackson Heart Study (JHS), includes all activities conducted by investigators and staff members that are associated with the collection of data from or about participants. These data acquisition activities have been ongoing since the inception and throughout every phase of the study. In this article we will describe data collection activities during each stage of the study, including 1) the establishment of research priorities and planning for data collection during the feasibility phase, 2) baseline data collection during the first funding period, 3) ongoing data collection during the second and third funding periods, and 4) preparation for collecting data during the fourth funding period (2018–2024). The dissemination of findings from the JHS began in 2007 with the publication of the first papers that used study data. The principal

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investigator and science officer established and promoted a philosophy and practice of dissemination and translation of findings based on study data. The JHS investigators disseminated new and significant findings to the medical and scientific communities through publications in scientific journals and presentations at medical professionals’ meetings and conferences. The Subcommittee on Translating Research into Practice and Prevention assisted the principal investigator in interpreting selected findings into plain language that participants and the lay community could understand and use. In this article, we will describe how investigators and collaborators disseminated findings and the steps between acquisition and dissemination. Establishing the Research Priorities and Planning for Data Collection during the Feasibility Phase Decision-making about the data to be collected at baseline was based on the research priorities, scientific questions, and rationale for the JHS. The

Planning Steering Committee derived these priorities, questions, and rationale during the Feasibility Phase (October 1997–February 1999) by soliciting recommendations from content and research experts representing local, regional, and national institutions, agencies, practice groups, and associations. The Steering Committee and these experts posed seven potential research questions that addressed hypertension, congestive heart failure, renovascular disease, traditional cardiovascular disease risk factors, genetic epidemiology, novel imaging techniques, and socio-demographic factors. 1. Can and should the Jackson Heart Study be designed to look at the risk factors for the development of high blood pressure (e.g., sodium, potassium, obesity, and diabetes)? 2. W hat is the importance of left ventricular hypertrophy and congestive heart failure to coronary heart disease risk in African Americans? How should it be studied to understand its role best? 3. W hat is the importance of renovascular disease and its precursors to cardiovascular disease risk in African Americans? Can they and/ or their precursors be studied effectively in a prospective study? 4. Do we know the relationship of the traditional risk factors (i.e., age, high blood pressure, serum cholesterol, low-density lipids, highdensity lipids, smoking, obesity, and diabetes) to the risk of heart disease in African American men and women? Should they be studied in the JHS? If so, how? 5. How can the study of genetic epidemiology be incorporated into the JHS? 6. W hat are the key noninvasive imaging techniques that should be incorporated into the JHS? 7. W hat is the impact of social forces (e.g., discrimination, socioeconomic status, urban/rural differences, residential mobility) on cardiovascular disease risk in African Americans? Can and should it be studied in the JHS?1

Poster: Impact of Place on Cardiovascular Health.

Over time, the Steering Committee justified supporting the importance of the priority questions as well as potential methods that might be used to explore each question. The questions provided the Steering Committee with the basis for developing protocols and data collection instruments, and where feasible, adapting protocols in use in the Atherosclerosis Risk in Communities Study to the JHS. The National Heart, Lung, and Blood Institute (NHLBI) was interested in harmonizing data across population studies to create a comprehensive dataset that could be made available to a broad audience of researchers. The Steering Committee planned five methods of data collection: clinic examinations, survey questionnaires, annual follow-up interviews, events surveillance, and mortality surveillance. The intersecting and overlapping processes of acquiring, managing, and analyzing JHS data required constant inter-institutional collaboration. Handling data was a delicate and sensitive challenge. The Examination Center, which was administered through the University of Mississippi Medical Center, was responsible for data acquisition. The Data Coordinating Center, which was administered through Jackson State University from 1999 to 2013 and the University of Mississippi Medical Center from 2013 to the present, was responsible for data quality, management, analysis, and distribution. Therefore, these centers had to function as a seamless unit to optimize the likelihood of acquiring and managing high-quality data. After the research priorities had been established, the next steps in planning for data collection were the creation of protocols, manuals of operation, data collection instruments, and informed consent. Creating Protocols, Manuals of Operation, Data Collection Instruments, and Informed Consent The Steering Committee chairperson assigned a total of 34 protocol working groups and primary authors for 11 manuals of operation based on the seven priority research questions. Subsequently, manuals, protocols, and data collection instruments were developed, reviewed, and approved by the Steering Committee in preparation for data acquisition. Dr. Sharon Wyatt, coinvestigator for the JHS, coordinated a team of Examination Center and Coordinating Center personnel who collaborated with the working groups to create the JHS instruments, associated question-byquestion documents, and manuals of operation. Subsequently, the Examination Center and Coordinating Center staff worked sideby-side to test and tweak the protocols, manuals, and instruments used as guidelines for data acquisition procedures. Finally, the instruments were installed on the database servers that were used for data collection and storage. The process of preparing participants for the informed consent process began with the Home Induction Interview, during which JHS recruiters gave participants a reader-friendly explanation of the consent form process. Clinic staff practiced role-playing how to obtain participants’ consent sensitively and were aware that it would take longer for some participants than for others. All staff members were also sensitive in

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discretely offering to read the consent form aloud to participants who may have limited reading skills. The JHS staff were trained in the use of a layered consent document that allowed participants to have a voice in how their data could be used. Participants were able to make choices about: • participation in the Family Study • participation in genetic studies • collection of their genetic data through the production of genomic DNA or cryopreservation of mononuclear cells • storage of their blood and urine specimens • collection of information from their hospital records • reporting their clinic results to their primary care provider (i.e., physician or nurse practitioner) • sharing of their data with non-JHS investigators • limiting how and when their data could be shared (such as noncommercial use, cardiovascular disease, any major disease) Collecting Baseline Data during the First Funding Period (September 2000–March 2004) During the first funding period (September 2000–March 2004), the Examination Center staff enrolled 5306 African American adults from the Jackson metropolitan area. The staff collected data from multiple sources, beginning with the Home Induction Interview, which occurred during the Recruiter’s initial contact with the potential participant, and continuing with the Baseline Examination. Home Induction Interview During the home induction interview, Recruiters established eligibility and obtained verbal consent for participation in the

Poster: Three Themes for Research on Black American Cardiovascular Health.

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study. Recruiters also counted household members, identified nonhousehold family members, and gathered contact information. The recruiters administered questionnaires that gathered additional information about household members and extended family, personal and family history, health practices, health care access and utilization, stress, and personal data/socioeconomic status. When recruiters completed the Home Induction Interview, they made the appointment for the participants to visit the Examination Center. Recruiters gave the potential participants a packet that included an information sheet containing instructions about what to wear, what to bring with them, and requested that they not eat or drink anything after midnight on the night before their appointment. The packet also contained a copy of the informed consent document, a bag for all prescribed and over-the-counter medications, and four self-administered survey questionnaires that collected information on social support, depression, religion, coping, and family structure. Clinic Examination 1 The data collected during Clinic Examination 1 included physical measures (anthropometry, blood pressure, venipuncture for the collection of blood specimens, urine specimens, pulmonary function, electrocardiogram, echocardiogram, and carotid ultrasonography) as well as a battery of forms that collected data on medical history, family history, sociocultural factors, health status, and cardiovascular risk factors. Participants were also invited to participate in the Diet and Physical Activity Sub Study, the Family Study, and two follow-up procedures that collected ambulatory blood pressure measurements and 24-hour urine specimens. The clinic examination was organized as a series of workstations where specific components were performed over approximately four hours and 30 minutes. The reception workstation was located at the entry of the Examination Center. A staff member greeted participants and directed each one to a private location where they were given an explanation of the consent document and where they signed the informed consent form. The staff member updated the participants’ contact information, collected their medications, reviewed the selfadministered instruments, and asked them if they had anything to eat or drink since midnight. At the next station, a staff member measured standing height, waist and neck circumference, body composition, and blood pressure. Following these procedures, participants moved to the laboratory workstation, where a technician collected urine and blood specimens. Another staff member offered participants a snack and a short break. Next, participants cycled through the electrocardiogram, echocardiography, and pulmonary function workstations before going to the interview workstation. At the interview workstation, staff-administered questionnaires on medications, personal health and medical history, sleep, stroke history, racism and discrimination, hassles and moods, physical activity, tobacco, alcohol and drug use, and renal disease.

requiring hospitalization such as angina, myocardial infarction, and stroke. Heart failure was added as a cardiovascular event beginning in 2005. A team of four abstractors used information gathered from annual follow-up interviews and data obtained from the discharge records of seven local hospitals to confirm cardiovascular morbidity and mortality. Abstractors also requested death certificates for all deceased participants and collected information from the certificates to document the cause of death. Abstractors entered the data abstracted from hospital records and death certificates into a database that the University of North Carolina Collaborative Studies Coordinating Center maintained and managed. The center’s Morbidity and Mortality Committee used the abstracted information to classify morbidity and mortality associated with cardiovascular disease. Alethea Hill and Her Poster at the 2010 Scientific Conference

Alerts for Abnormal Findings The JHS established alert procedures to ensure that abnormal findings were addressed in a timely and appropriate fashion. Specific parameters were developed for blood pressure, electrocardiogram, and laboratory findings. These parameters were used to establish guidelines for an emergency, immediate, urgent, and routine referrals. Clinic staff knew to call 911 if participants experienced life-threatening symptoms while in the Examination Center. Clinic nurses were also certified in cardiopulmonary resuscitation. An immediate referral could be triggered by findings such as a systolic blood pressure greater than 210 mm Hg, or a diastolic blood pressure greater than 120 mm Hg. The participant would be instructed to see his/her primary care provider on the same day, and a clinic nurse would call the participant’s primary care provider to facilitate the process. The social worker would find a primary care provider for participants who did not have one. Abnormal findings that were not severe would trigger an urgent referral. Participants were instructed to see a primary care provider within one week. A routine referral was triggered by abnormal findings that were already being followed by the participant’s primary care provider. Implementing Annual Follow-up Interviews, Events, and Mortality Surveillance Approximately one year after participants were recruited and annually after that, Annual Follow-Up Interviewers collected information via telephone about their health status, medical history, diagnostic and invasive procedures, and hospitalizations over the preceding year. In addition to updating participants’ contact information, interviewers determined if the participant had experienced a cardiovascular event (e.g., angina, myocardial infarction, stroke, heart failure) or cardiovascular procedures such as angiography or surgery, or death as reported by a proxy informant or the National Death Index. Cardiovascular morbidity and mortality among JHS participants were determined by collecting surveillance data on conditions

Collecting Data During the Second Funding Period (2005–2013) The second funding period (2005–2013) included two clinic examinations as well as ongoing annual follow-up and surveillance activities. Participants enrolled during Examination 1 were eligible to participate in subsequent examinations. Examination 2 (2005–2008) Examination 2 lasted approximately two hours and included the measurement of height, weight, waist girth, and sitting blood pressure. The interview forms administered were a medication survey, medical history, stroke symptoms, renal disease, and hassles and moods. Spot urine was collected. Blood specimens were collected for analytes and biomarkers as well as for cryopreservation from non-family study participants. Geographic coding (geocoding) of the built environment was done only during Examination 2. All participants received a home blood pressure monitor and were asked to record, in a diary, their daily blood pressure readings, which were also stored in the monitor. Participants were instructed to return with the monitor after 14 days so that the daily blood pressure readings could be retrieved from the dairy or the monitor. When necessary, the Examination Center staff called participants who did not return to the center with the blood pressure monitor to retrieve their readings. These data were subsequently stored in a separate database. Two imaging studies were added to Examination 2 on consenting participants. Computed tomography of the chest was done for coronary artery and aortic calcium and of the abdomen for visceral fat. Cardiac magnetic resonance imaging of the chest was done on a subset of participants (~264) to study the structure and function of the heart. The addition of computed tomography and magnetic resonance imaging studies required the development of an alerts process for incidental findings. The most frequent incidental findings were benign lung and colon tumors, and aortic aneurysms that required follow-up by the participants’ primary care provider.

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Examination 3 (2009–2013) Examination 3 lasted approximately two hours. It included spot urine, measurements of height, weight and waist girth, sitting and ankle-brachial blood pressure, 12-lead electrocardiography, and blood samples for analytes and biomarkers. The data collected using staff-administered questionnaires concerned medication and medical history, stroke symptoms and renal disease, racism and discrimination, depressive symptoms, dysthymia, hassles and moods, tobacco and alcohol use, physical activity and personal data/socioeconomic status, and two new surveys, the Montreal Cognitive Assessment, and Chronic Burden. During Examination 3, the collection of imaging data was continued, by repeating magnetic resonance imaging using contrast media on the subset of consenting Examination 2 participants, along with a subset of approximately 1400 new Examination 3 participants. By February 2013, the JHS database contained as many as 6500 data points on each of the 5306 African American participants.2 Table 1 displays the range of data categories, by examination, and Table 2 displays categories of data collected via surveys and interviews. Collecting Data during the Third Funding Period (2013–2018) The third round of funding did not include a clinical examination. However, we continued to collect data through annual follow-up interviews and by abstracting surveillance data from hospital records for cardiovascular events and mortality. Preparing to Collect Data During the Fourth Funding Period (2018–2024) During the fourth funding period (2018–2024), study participants will have the opportunity to participate in another clinical examination. Examination 4 includes anthropometry, blood pressure, electrocardiogram, echocardiogram, and brain magnetic resonance imaging. Blood specimens will be collected for analytes and storage, and urine will be collected for testing albumin and creatinine. Participants will also be asked to complete demographic, medical, behavioral, and psychosocial questionnaires. Pilot testing conducted in Spring 2020 provided an opportunity to assess what was working as planned, and what needed further work. Data Acquisition Through the Family Study The Family Study was designed to detect new genes influencing the risk factors for a variety of heart, lung, and blood disorders. By the end of recruitment in March 2004, the JHS had 1499 members of 291 families nested within the 5306 recruited participants. Additionally, the study had the largest repository of genetic data from an African American population, which made it a highly valued resource for researchers in genetics and related areas. By 2016 the study had nested within its database pedigree data on 2044 individuals in 428 pedigrees with a mean family size of 4.8, median family size of 3, and maximum family size of 32.3 JHS genetic data reside in the comprehensive NHLBI

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database, while DNA specimens are stored in an off-site location on subcontract to the study. Data Management and Distribution Data are managed and distributed by the Coordinating Center. The process involves checking data ranges across forms for inconsistencies, investigating and resolving inconsistencies with the Field Center, and creating datasets, codebooks, and data dictionaries. Investigators and collaborators can search for key variables in the code books on the JHS website (www.jacksonheartstudy.org) under “data access.” They can see what variables are available and get a basic understanding of what the data look like using the website Visualization tools. To gain access to the study data for analysis, investigators must submit a manuscript proposal or ancillary study proposal and sign a Data and Materials Distribution Agreement. Vanguard Centers are designed to offer an enhanced mechanism for sharing complex JHS data with collaborators to stimulate optimal scientific productivity. As of March 2020, the JHS was actively engaged in collaborative agreements with 16 Vanguard Centers at a variety of research institutions and agencies throughout the United States. Study data are shared with Vanguard Center investigators via a data package, which consists of selected data collected during the three clinical examinations, on morbidity, mortality surveillance, annual follow-up, ancillary studies, as well as supplementary data produced by working groups. The Vanguard Data package is updated and released annually by the Coordinating Center and includes calibration studies, newly derived analysis variables, and code to support future analysis. Additionally, a TRANS-data package constructed by the Coordinating Center provides educators with tools and resources for training students and young investigators, as well as assisting researchers to explore study data for use in manuscript proposals. The TRANS-data package consists of de-identified data, including a 50% random sample of participants consenting to all study data usage. A TRANS-teaching data package is also available for use with students in classroom settings containing only an analysis dataset of the most used variables. JHS data are also disseminated through public data repositories, including the Biologic Specimen and Data Repository Information Coordinating Center and the Database of Genotypes and Phenotypes. Data Analysis and Manuscript Development Data analysis and manuscript development are among the activities of the JHS Coordinating Center and Field Center, which collaborate with working groups to address needs related to data analysis. Working groups are defined by priority areas that have the best potential for maximizing the benefits of collaboration. JHS working groups are collaborating on topics such as cardiovascular disease outcomes, hypertension, chronic kidney disease, nutrition, and physical activity, diabetes and obesity, social determinants of health,

genetics, Centers for Medicare/Medicaid health care delivery, EKG/Arrhythmia, biomarkers, healthy aging, and community engagement.4 Additionally, Coordinating Center analysts perform sample size/power calculations for planning ancillary studies and support data harmonization efforts and statistical analyses in consortia collaborations, including research consortia. Research consortia in which the JHS is currently collaborating include Cohorts for Heart and Aging Research in the Genomic Epidemiology Consortium, Trans-omics for Precision Medicine initiative, Chronic Kidney Disease Prevention Consortium, and the Cross-Cohort Collaboration Consortium. JHS data are highly

valued in research consortia because it is the largest data set with genetic data for an all-African American cohort. The first step in manuscript development is the approval of the manuscript proposal by the Publications and Presentations Subcommittee and approval of a Data and Materials Distribution Agreement, which permit the use of the study data. The lead author is responsible for guiding the writing group through the manuscript development process. Coauthors may self-select specific topics, or the lead author may assign a topic based on the coauthor’s knowledge and expertise. Lead authors typically follow the author guidelines

Table 1. The Jackson Heart Study Data Categories by Examination10 Data Category

Examination 1

Examination 2

Examination 3

Anthropometry standing height

Neck girth

Waist girth

Weight

Blood pressure sitting

Ankle-brachial

Ambulatory (pre/post)

Imaging computed tomography: chest and abdomen. Calcium scoring and fat deposition

Magnetic resonance imaging: cardiac structure/function (noncontrast)

Magnetic resonance imaging with contrast: cardiac structure/function, great vessel flow velocities Ultrasound (Echo and carotid)

Electrocardiography (12 lead)

Echocardiography

Blood analytes, multiple biomarkers

Urine 24-hour

Spot

Genetics (Affy 6.0, Illumina IBC, Microsatellite, Copy Number Variation) DNA

Cryopreservation (family component)

Cryopreservation (nonfamily component)

Geographic (geocoding, linked census, built environment)

Centers for Medicare/Medicaid linked (procedures, treatment patterns, resource costs, etc.) Events, both ascertained from surveillance and physician adjudicated (heart failure, stroke, coronary heart disease, myocardial infarction)

Pulmonary function

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The Field Center and Coordinating Center collaborate to promote the development of manuscript proposals and manuscripts by pre-doctoral graduate students, post-doctoral fellows, and early-career JHS investigators through a monthly Writer’s Lab. The Writer’s Lab is a monthly forum where trainees and investigators meet to present and discuss research projects. The discussion topics range from hypothesis development to exploratory data analysis to the preparation of posters or slides for presentations at scientific meetings. —Pramod Anugu, MS; Director of Information Services, University of Mississippi Medical Center of the journal they select for specifics related to authorship such as definition, criteria, contributions, and requirements. In the manuscript development process, lead authors are strongly encouraged to engage colleagues to proofread and provide internal reviewer input before submitting the manuscript to the Publications and Presentations Subcommittee for review. The manuscript review process is described on the JHS website. The Field Center and Coordinating Center collaborate to promote the development of manuscript proposals and manuscripts by predoctoral graduate students, postdoctoral fellows, and early-

career JHS investigators through a monthly Writer’s Lab. The Writer’s Lab is a monthly forum where trainees and investigators meet to present and discuss research projects. The discussion topics range from hypothesis development to exploratory data analysis to the preparation of posters or slides for presentations at scientific meetings. Both data analysis and manuscript development are synergistic components of the dissemination of findings. The gold standard of success for research is the total number of publications and the number of publications in high impact, peer-reviewed journals. The

Table 2. The Jackson Heart Study Survey/Interview Data by Examination11 Survey/Interview

Examination 1

Examination 2

Examination 3

Medication survey

Medical history

Health history/personal and family history

Stroke symptoms

Renal disease Chronic burden

Racism and discrimination

Depressive symptoms & dysthymia

Hassles and moods (a composite of validated assessment including 3 stress inventories, job strain, John Henryism, anger, hostility, neighborhood violence, coping, etc.)

Tobacco use

Alcohol and drug use

Montreal cognitive assessment

Sleep health care continuity and trust

Physical activity

Personal data/socioeconomic status

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Figure 1. The Jackson Heart Study Publications, 1999–201913

JHS addresses an additional standard of translating study findings and implications into plain language that can be understood and used by participants and the greater community of nonscientists. Dissemination and Translation of Jackson Heart Study Findings JHS investigators and collaborators disseminate study findings to fellow researchers and scientists, faculty, and students in public health, medical, social, and health-related sciences. Periodically, findings are translated into user-friendly key points for busy primary care providers and into plain language for lay audiences. The Publication and Presentation Subcommittee has the responsibility for reviewing manuscript proposals to determine the originality of hypothesis/hypotheses, adequacy of expertise, overlap with manuscript proposals or papers already approved or published, and review of completed manuscripts to ensure that the study is not misrepresented. Translation of Scientific Articles into Lay Language The Publication and Presentation Guidelines require a summary of the manuscript and its findings written in lay language for the participants and community. The JHS Translating Research into Practice and Prevention Subcommittee conducted a pilot project over three years 2012–2014 to develop effective reader-friendly summaries of published study articles for posting on the public website and for distribution at community gatherings. Selected lay summaries are available on the JHS website (www.jacksonheartstudy.org). White et al.5 provide a complete description of the pilot project. The pilot project investigators, in compliance with the Plain Writing Act of 2010,6 wanted study participants and the lay public in the Jackson area

to have information on heart-healthy tips, based on study research that they could use: Using plain language avoids creating barriers that set us apart from the people with whom we are communicating. Part of the National Institutes of Health’s mission is to reach all Americans with health information they can use and communicate in a way that helps people understand research easily.7 The Federal Plain Language Guidelines were designed to help users accomplish the following: • find what they need • understand what they find • use what they find to meet their needs8 Impact Metrics: JHS Publications and Presentations The impact of JHS publications addresses productivity, contribution, quality, and dissemination of research using a variety of traditional and alternative metrics. JHS publication productivity measured by the volume of scholarly outputs produced over a given time is shown in Figure 1 for the years 1999 to 2019, with 2017 shown as the most productive with 89 journal articles. A report based on information from Clarivate Analytics Web of Science database and the PubMed database of about 510 JHS documents indicated that cumulatively they had generated over 23,621 citations during the period between 1999 and February 2019. The average

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citations during this time frame for a document were 46 citations, which can indicate a good degree of relevance and impact in the scholarly literature. These documents have contributed greatly to the JHS’s scholarly record.9 The study’s contribution to research is reflected in

Figure 2. The Jackson Heart Study Presentations, 2015–202015

the top research topics, as presented in Table 3: Top Research Topics by Research Area and Count. JHS researchers have published in 154 unique source titles; the publications include journal articles, conference proceedings, books, and book series. Table 4 shows the top 30 source titles for the JHS documents. JHS investigators, collaborators, fellows, and other affiliates disseminate study findings via presentations at scientific conferences. As of January 2020, a total of 138 presentations have been made at scientific conferences such as the American Heart Association, American Public Health Association, American Society of Human Genetics, International Genetic Epidemiology Society, Sleep Research Society, American Diabetes Association, American Society of Nephrology, and the American Society of Echocardiology. Figure 2 shows the number of presentations by year from March 2015 to January 2020. The highest number

Table 3. Top Research Topics by Research Area and Count12 #

Research Area

Count

Cardiovascular System Cardiology

142

Genetics Heredity

109

Public Environmental Occupational Health

General Internal Medicine

Endocrinology Metabolism

Science Technology other topics

Biochemistry Molecular Biology

Nutrition Dietetics

Urology Nephrology

Neurosciences Neurology

Hematology

Psychiatry

Environmental Sciences Ecology

Research Experimental Medicine

Mathematical Computational Biology

Ophthalmology

Respiratory System

Biomedical Social Sciences

Biotechnology Applied Microbiology

Cell Biology

Physiology

Mathematics

Otorhinolaryngology

Pharmacology Pharmacy

Psychology

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Table 4. Top 30 Source Titles for the Jackson Heart Study Documents #

Source Title

Number of Articles

Ethnicity and Disease

Human Molecular Genetics

Journal of American Heart Association

PLOS Genetics

American Journal of Human Genetics

203

PLOS ONE

Circulation Cardiovascular Genetics

American Journal of Medical Sciences

Diabetes Care

Nature

Nature Genetics

American Journal of Hypertension

Hypertension

10 10

Circulation

International Journal of Environmental and Public Health

Journal of Clinical Hypertension

Circulation Failure

American Journal of Cardiology

American Heart Journal

Obesity

Journal of the American Medical Association (JAMA) Cardiology

Journal of Racial and Ethnic Disparities

American Journal of Public Health

Journal of Nutrition

BMC Nephrology

Human Genetics

American Journal of Preventive Medicine

Journal of the American Society of Hypertension

American Journal of Kidney Diseases

Journal of Endocrinology and Metabolism

of presentations per year is shown for 2017 and 2018 at 36 presentations each year. Summary Data acquisition, data analysis, manuscript development, and dissemination of findings were lock-step processes for the JHS over the 20-year period of 2000–2020. Jackson Heart participants and a cooperative and supportive community made it possible to acquire data by their cooperation and commitment to the success of the study. A cadre of staff and coinvestigators led by a principal investigator focused data acquisition on several key research questions related to cardiovascular risks among the African American population. Coinvestigator/staff teams with guidance from external consultants

planned and implemented data acquisition, analysis, and dissemination of findings to scientific and nonscientific audiences. This is the legacy, after 20 years, of the JHS’s data acquisition, analysis, and dissemination activities. n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268 201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN268201800014I), the Mississippi State Department of Health (HHSN268201800015I) contracts from the National Heart, Lung , and Blood Institute (NHLBI) and the National

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Institute on Minority Health and Health Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung , and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services.

12. Correa A. Top Research Topics by Research Area and Count. Impact Summary. Jackson Heart Study Coordinating Center Semi-Annual Report 68. 13. Correa A. 30 Source Titles. Impact Summary. Jackson Heart Study Coordinating Center Semi-Annual Report 71. 14. Jackson Heart Study Publications. JHS Publications Explorer. Accessed March 27, 2020. https://jacksonheartstudy.umc.edu/vizio/JHS-Publications Expo.html 15. Jackson Heart Study Presentations. Jackson Heart Study Website. JHS Presentations Explorer. Accessed 03/27/2020. https://jacksonheartstudy.umc.edu/ vizio/JHS-PresentationsExpo.html

References 1. Hall JE, Jones DW, Ward-Fletcher B, et al. Jackson Heart Study symposium on cardiovascular disease in African Americans. Am J Med Sci. 1999;317(3):141. 2. Taylor HA. Synthesis: The Jackson Heart Study of the future. Ethn Dis. 2012;22(3 Supp 1): S1-S49. 3. Genetics Overview. Accessed March 27, 2020. https://www.jacksonheartstudy. org/Research/Study-Design/Genetics. 4. Working Groups. Accessed March 27, 2020. https://www.jacksonheartstudy. org/Research/Collaborations 5. White WB, Nelson CR, Henderson FC. Developing lay summaries as a bidirectional learning opportunity for authors and undergraduate scholars: The Jackson Heart Study. Pedagogy in Health Promotion. 2020;6:137-141. 6. The Plain Language Writing Act of 2010. Accessed March 27, 2020. https:// plainlanguage.gov/law/

Author Information Professor of Nursing, University of Mississippi Medical Center, Associate Director, Field Center Jackson Heart Study, Jackson, Mississippi (Winters). Professor, Department of Medicine, University of Mississippi Medical Center, Principal Investigator and Director, Jackson Heart Study, Jackson, Mississippi (Correa). Professor, Department of Medicine, Chief Science Officer, Jackson Heart Study, Jackson, Mississippi (Sims). Director of Information Services, University of Mississippi Medical Center, Jackson, Mississippi (Anugu). Associate Professor, University of Mississippi Medical Center, Jackson, Mississippi (Min). Project Manager III, University of Mississippi Medical Center, Jackson, Mississippi (Ekunwe). Jackson Heart Study, Program Official, National Heart, Lung, and Blood Institute, Bethesda, Maryland (Nelson). Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson).

7. The National Institutes of Health Plain Language Guidelines. Accessed March 27, 2020. https://www.nih.gov/institutes-nih/nih-office-director/office-communi cations-public-liaison/clear-communication/plain-language. 8. Plain Language Guidelines. Accessed March 27, 2020. https://plainlanguage. gov/guidelines/ 9. Publications Graph. JHS Publications Explorer. Accessed March 27, 2020. https://jacksonheartstudy.umc.edu/vizio/JHS-PublicationsExpo.html.

Winters

Correa

Sims

Anugu

Min

Ekunwe

Nelson

Henderson

10. Jackson Heart Study Data Categories by Examination. Jackson Heart Study Procedures. Accessed March 27, 2020. https://www.jacksonheartstudy.org/ Research/Study-Design/Timeline-Procedures 11. Jackson Heart Study Survey,Interview Data by Examination, Jackson Heart Study Procedures. Accessed March 27, 2020. http://www.jacksonheartstudy.org/ Research/Study-Design/Timeline-Procedures

Free consult line for pediatric primary care providers Consult with a UMMC child psychiatrist or child psychologist regarding ADHD, anxiety, depression, and other mental or behavioral health concerns. • Diagnostic clarification

• Medication adjustment

• Treatment planning

Consult line: 601.984.2080 9 am – 4 pm, Monday – Friday umc.edu/champ

champ_MSMA_7.5x2.5.indd 1

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8/7/20 12:17 PM

Dr. Mary Crump Speaking

Dr. Evelyn Walker and Dr. Teri Manolio

Melverta Bender, Pramod Anugu, Gregory Wilson

Dr. Michael Griswold Observes a Poster at the 2010 Scientific Conference

SCIENCE OF MEDICINE

Jackson Heart Study: Training and Education Centers Develop a Diverse Public Health Workforce FRANCES C. HENDERSON, EDD; WENDY WHITE, PHD; ASOKA SRINIVASAN, PHD; MARINELLE PAYTON, MD, PHD; BETTINA BEECH, PHD; CHERYL NELSON, MSPH

Introduction and Background Mississippi is perpetually in the process of addressing diversity and inclusion in its health professions and biomedical research workforce. The Training and Education Centers established by the Jackson Heart Study (JHS) are significant contributors to a model that works for underrepresented minority undergraduate and graduate students. The National Institutes of Health/National Heart, Lung, and Blood Institute (NIH/NHLBI) invested in facilitating access to resources and expertise to enable the JHS to serve as a training ground for undergraduate and graduate students and early career investigators to help ameliorate the shortage of minority biomedical researchers and to provide innovative programs, research opportunities, and mentorship to stimulate and nurture students’ interest in science and research. For 20 years, the

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JHS, through the Undergraduate Training and Education Center (UTEC) at Tougaloo College (TC), has contributed to an increased number of underrepresented minorities in the public health workforce, including physicians, nurses, biomedical researchers, epidemiologists, biostatisticians, and others. Further, it has provided the impetus for expanding the student population served to include graduate students and for increasing the number of Training and Education Centers affiliated with the JHS from one in 1999 to three in 2018. Evidence of the need to increase the diversity of America’s public health, health professional, and biomedical research workforce has increased steadily since the publishing of the Report on Black and Minority Health in 1986. The recommendations for health professions’ development included: “The development of innovative mechanisms to

Jackson Heart Study Undergraduate Training and Education Center Scholar Graduates with Dr. John Ruffin at the 2010 Anniversary Celebration

attract minorities into the health care field and health research with direct and continuing input from leaders in the minority health professions.”1 In 2003, the Institute of Medicine documented in their publication, titled “Unequal Treatment,” the potential benefits to health and healing when the patient and health care provider share the same ethnic/racial identity.2 McGee, Saran, and Krulwich compiled an annotated bibliography of 18 articles titled “Diversity in the Biomedical Research Workforce: Developing Talent,” in which they explored diversity programs focused on undergraduates, postbaccalaureate programs, and programs focused on pre- and postdoctoral research education. They concluded, “Meeting the challenges (of a diverse biomedical workforce) will require continual innovative modifications and enhancements of the research training models that we use as well as ongoing outcomes evaluation.”3 A variety of theories were proposed about the reasons why the numbers of underrepresented minority health professionals and scientists were not in parity with the general population. Some touted opportunity, knowledge of career options, deficits in high school preparation, lack of preparation for the rigors of college, lack of a science and mathematics background required for entry into science-based careers, and the need for mentoring, as well as financial and social support. Workforce diversity programs address one or more of these barriers; however, the reality is that no one approach is a panacea. According to Taylor, “The dearth of scientists from the population most afflicted by cardiovascular disease means that we must prepare minority students for careers in sciences to build an expanded and ethnically diverse workforce in Mississippi. The future health of the nation compels us to produce future cohorts of scientists who are prepared to press on toward the long-term goal of eliminating health disparities from all segments of society.”4

In 1997 during the planning and feasibility phase of the JHS, stakeholders and planners addressed the persistent scarcity of African American students in Mississippi who pursued careers in public health and biomedical research by proposing the location of an UTEC at Tougaloo College. In 1998, the UTEC was funded by the NIH/NHLBI and the Office of Minority Health. The idea was innovative because it embedded an UTEC within the infrastructure of an epidemiological study. According to the NIH, “When students are provided the opportunity to engage in state-of-the-art biomedical research with appropriate facilities, support, and mentorship, their appetite will be whetted to enter a career in biomedical research.”5 Undergraduate Training and Education Center The primary goals of the UTEC are to 1. create a pool of well-trained high school students, who, upon entering college could successfully complete undergraduate and graduate professional degrees in health professions and public health; 2. introduce a program of college courses to prepare the students to pursue advanced studies toward public health and epidemiology; and 3. involve the students in hands-on experiences to create interest in public health careers. Since 1997 the JHS UTEC at Tougaloo College has provided programs to build the individual capacity of selected high school and undergraduate students and interested health professionals in careers in epidemiology, biomedical research, and epidemiology. In 1997 Tougaloo College, under the coordination of Dr. Nimr Fahmy and Dr.

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Baharati Mehrotra, met the challenge of planning and implementing a short introductory course on epidemiology for a target population of health professionals and graduate and undergraduate students. It was a hybrid course because it was designed to meet the needs of a multitiered student population. The course was taught over six days and soon became known as “the Six-Day Epi Course.” It was offered in 1997 during the feasibility phase of the JHS as a trial run to see if Tougaloo, as a small liberal arts college, could successfully deliver the course. By engaging the expert resources of Dr. Moyzes Szklo, Professor of Epidemiology in the Bloomberg School of Public Health at Johns Hopkins University, Tougaloo successfully initiated the course and expanded it to meet the needs of students who wanted a course that extended beyond the basics. Between 1997 and 2011, a total of 282 students completed the six-day epidemiology courses. A benefit for many health professionals who had not previously taken an epidemiology course was the enhanced ability to understand the terminology, scope, and applications of the field. The high school summer enrichment program began in the summer of 1999 with a course in life sciences. At that time, the plan was to offer three courses: one in life sciences, one in chemistry, and one in mathematics. In 2000, at the recommendation of the JHS Observational Studies Monitoring Board, a planning committee developed a strategically planned approach to teaching science, language arts, and mathematics along with communication and critical thinking skills. The resulting four-week course, science, language arts, and mathematics I, II, and III for ninth, tenth, and eleventh graders, respectively, utilizing an integrated approach to teaching these skills, was developed and implemented in 2001. The content of the three workshops was articulated so that each overlapped with the other; mathematics skills supported the students’ work in the science laboratory, and the work in language arts made connections to the students’ work in both the mathematics workshop and science laboratory. An external evaluation with parents and students resulted in adding the reading enhancement and ACT preparation curriculum to the program. Over the years, the three sessions have proven to be highly successful and popular. Students are introduced to

Science, Language Arts, and Mathematics Students in Summer Workshop at Tougaloo

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public health, epidemiology, health disparities, and biostatistics. Science, language arts, and mathematics students also have the opportunity to interact with health professionals and biomedical researchers who are invited as guest speakers during at least two activity periods each week. Guest speakers have included former participants who are currently health professionals or researchers as well as investigators from the JHS. Through a Health Careers Exploration Fair in 2018, students were exposed to representatives from professional and graduate schools around the state. Science, language arts, and mathematics participants have earned Bachelor of Science degrees and completed graduate work in the biological and public health sciences.6 The JHS Scholars Program began in fall 1999 with the admission of five freshmen. Each successive year, twelve freshmen students, at the end of their first semester, are selected from a competitive pool of applicants and designated as JHS UTEC Scholars. The JHS curriculum involves both didactic and “hands-on” approaches to prepare scholars for graduate training and careers in public health. Scholars are required to take four JHS-sponsored courses: Introduction to Public Health, and Epidemiology and Biostatistics, consecutively, during the fall and spring of their sophomore year; Research Methods in Public Health in the fall of their junior year; and Ethics, Medicine, and Technology in the spring semester of any year before graduation.7 Scholars learn about public health and related disciplines; are introduced to career opportunities in public health, biomedical research, and healthrelated professions; conduct research under the mentorship of health professionals and scientists; and present their research findings at local, state, and national conferences. Scholars are also awarded a stipend. Scholars participate in two Summer Research Internships, one between their sophomore and junior years and the other between their junior and senior years. Summer Research Internships are made possible through formal and informal partnerships. Formal partnerships are called Documented Contractual Collaborations and are usually R-25 or other training grants that promote summer research, particularly for underrepresented minority students.

Science, Language Arts, and Mathematics Students in Summer Workshop at Tougaloo

Informal partnerships are Documented Non-Contractual Collaborators. The UTEC has partnered with 65 Documented NonContractual Collaborators since 2000 and with three Documented Contractual Collaborations.8 JHS Scholars attend colloquia where guest speakers are sometimes scholar graduates who hold positions in medicine, public health, biomedical research, and related areas who also serve as powerful role models for currently enrolled scholars. Scholars participate in learning excursions to the NIH, the Centers for Disease Control and Prevention, and the Bioethics Center at Tuskegee University, and have had PubMed training presented by the Technology and Communications Coordinator for the National Network of Libraries of Medicine, Southeastern/Atlantic Region. The success of the JHS Scholars Program is based on the approach of starting the application process in the fall of the students’ freshman year, establishing high standards for the program, careful initial screening of the applicants including an in-depth interview with finalists, and rigorous monitoring of adherence to the requirements for retention and progression in the program. Since 1999, approximately 1200 high school students have participated in Summer Workshops for ninth, tenth, and eleventh graders. Since 1999, over 225 students have been selected to participate in the JHS Scholars Program. Of these, approximately 100 JHS Scholars have entered the public health, biomedical research, and health professional workforce. As of January 2020, approximately 47 JHS Scholars are enrolled as sophomores or juniors or seniors, and 30 are enrolled in graduate and professional programs. In addition to earning Doctor of Medicine, Doctor of Philosophy, and Master of Science degrees in the health sciences, six scholars have earned dual degrees such as Doctor of Medicine and Masters in Public Health degrees and similar combinations. Approximately 23 scholars have earned Master of Science degrees in public health, chemistry, and biology, while 14 have earned graduate degrees in nonscience majors such as communications, English, law and other areas. The NIH/NHLBI and the National Institute on Minority Health and Health Disparities have supported training and education centers since the first contract in 1999. The NHLBI’s goal is to establish Training and Education Centers for cardiovascular epidemiology and related biomedical research, targeting underrepresented minority undergraduate and/or postgraduate students and leveraging the resources and research opportunities.9 The JHS UTEC is becoming recognized as a national model for enabling African American undergraduate students and undergraduate students from other underrepresented minority groups to enter careers in public health, biomedical research, and related fields, thus helping to enhance racial and ethnic diversity in the scientific workforce. In 2013, the NIH/NHLBI expanded the Training and Education Center Model from undergraduate only and initiated a Graduate Training and Education Center (GTEC) at Jackson State University (JSU). Additionally, for the JHS renewal period 2018–2024, the NIH/ NHLBI funded a second GTEC at the University of Mississippi Medical Center (UMMC).

Graduate Training and Education Center at Jackson State University The GTEC initially funded in 2013 for a five-year period is the first one to be affiliated with a longitudinal cohort study, the JHS. In 2018, the GTEC was awarded renewal status for a six-year term 2018–2024. The overall goal of the GTEC for this funding period is to continue training and education in cardiovascular epidemiology through the Daniel Hale Williams Scholars Program and related biomedical research, targeting underrepresented postgraduate students and leveraging the resources and research opportunities of the JHS. The four specific objectives are 1. strengthen the base of participating students’ knowledge of science and mathematics; 2. provide innovative programs, research opportunities, and mentorship to stimulate and nurture students’ interest in science and research; 3. produce publications and informational articles on educational topics for broader audiences; and 4. encourage students to pursue further training for future biomedical careers.10 The two-year Daniel Hale Williams Scholars Certificate Program provides a robust education and training program that applies evidence-based approaches to train graduate students in the social, behavioral, and medical sciences. Program components include a Learning Community as the central organizing framework through which Scholars participate in a Research Camp, an enrichment curriculum, a Summer Research Institute, Quarterly Seminars, and Brown Bag Luncheons. The Research Camp is an annual one-week intensive program focused on enhancing Scholars’ overall quality of research knowledge. It is planned and implemented so that lectures and exercises will • address how to read and critique the scientific literature; • enhance skills in scientific writing, • enhance skills in research evaluation, statistics, and design of epidemiological studies; and • guide career navigation.11 Daniel Hale Williams Scholars are required to participate in enrichment activities that complement and augment their academic experiences. Examples include Applied Biostatistics and Cardiovascular Disease Epidemiology, Emerging Topics in Social Epidemiology, and Research Writing. The Daniel Hale Williams Scholars Program aspires to improve the science and practice of keeping the public safe and healthy by empowering graduate students to enhance their ability to improve communities’ health. GTEC Scholars approach this task by conducting research using the JHS datasets and interacting with researchers and investigators who are familiar with the JHS data. Scholars also interact with renowned scientists from partnering institutions around the country,12

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Graduate Training and Education Scholars at Jackson State University Ms. Kisa Harris (JHS Staff at Tougaloo and Student in such as the University of California Los Angeles and New York University. the UMMC Graduate Training and Education Center GTEC GTEC Scholars present their research at local, state, and national scientific Population Health Science Program at UMMC) and Dr. Correa conferences and develop manuscripts for publication according to the JHS Publications and Presentations Subcommittee guidelines. students considering careers in cardiovascular health sciences. The Daniel Hale Williams Scholars participate in an intensive one-week, Graduate Training Education Center at the UMMC is committed to didactic and interactive Summer Research Institute focused on social cultivating the next generation of scientists and innovators who will be epidemiology, cardiovascular disease, cardiovascular epidemiology, equipped to contribute to the discovery of new knowledge and equally health disparities/health equity research, and the JHS. Researchers committed to the dissemination and application of this information to with substantial expertise in these areas deliver the curriculum via in- diverse stakeholder groups.13 The two-year certificate program is called person, didactic sessions, as well as participate in career mentoring the Robert Smith, MD, Graduate Scholars Program. sessions. This component includes a one-week Institute on Community Engagement to train GTEC Scholars in principles and practices of The overall goals of the program are to community engagement related to heart disease risk reduction, using findings from the JHS. • strengthen the research skills of graduate and health professional student groups underrepresented in biomedical sciences, to better To optimally match mentors with mentees, the GTEC JHS Training and prepare them for their professional careers and to pursue careers in Education subcommittee use questionnaires to pair Scholars with faculty biomedical sciences and, mentors with whom their career interest most closely align. Mentors work • advance the science of research training and education of graduate with their assigned mentee for the full two-year term of the program. students.14 The GTEC provides professional development that prepares Scholars to contribute to the workforce in the area of biomedical sciences and public health. Subsequently, the GTEC is increasing the supply of public health practitioners to address the demand that currently exists in Mississippi. The Daniel Hale Williams Scholars graduates are continuing their education in doctoral-level public health; science, technology, engineering, and mathematics; and social science programs, or they have secured positions in medical pharmacy, nursing, or biomedical sciences schools. The Graduate Training and Education Center at the University of Mississippi Medical Center The JHS GTEC at the UMMC is a two-year research mentoring and training program for underrepresented doctoral and health professional

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Robert Smith, MD, for Whom the UMMC Graduate Scholars Program Is Named

The dearth of scientists from the population most afflicted by cardiovascular disease means that we must prepare minority students for careers in sciences to build an expanded and ethnically diverse workforce in Mississippi. The future health of the nation compels us to produce future cohorts of scientists who are prepared to press on toward the long-term goal of eliminating health disparities from all segments of society.” —Herman A. Taylor, MD, MPH

The program is intentionally designed as an evidence-based, interactive research training and education program for graduate students enrolled in health-related degree programs from participating colleges and universities in Mississippi. Each year eight students are selected from a competitive pool of applicants enrolled in science, technology, engineering, and mathematics, or social science-related doctoral/ health professional programs at Mississippi colleges and universities. The two-year program is intentionally designed to be an intense research and training experience. Selected scholars commit to attending a five-day summer training institute for two consecutive summers, one midyear meeting, quarterly webinars, and travel to a JHS Vanguard Center at Vanderbilt University or Johns Hopkins University.13 Additionally, selected scholars have continuous interaction with senior researchers and mentors throughout the two-year program. Nationally respected investigators mentor scholars from the UMMC, University of California Los Angeles, Johns Hopkins University, Vanderbilt University, and the University of Texas Southwestern. In the first year of the two-year research training program, the focus is on cardiovascular epidemiology, biostatistics, health disparities, minority health, and the responsible conduct of research. Smith Scholars receive individual career coaching from experienced educators and work on teams to collaborate to produce scientific manuscripts to be submitted for peer review. In the second year, Smith Scholars enhance their core research skills in multiple areas, including cardiovascular epidemiology, biostatistics, scientific writing, and scientific presentations. Smith Scholars receive • memberships in national, regional, and state-level scientific organizations; • opportunities to visit leading research institutions and network with their faculty; • invitations to participate in the design and execution of research studies; • research mentoring from leading cardiovascular health scientists;

• career guidance from faculty at world-class universities; and • an annual stipend.14 The UMMC GTEC program faculty bring expertise in cardiovascular epidemiology and related research, health disparities, evidence-based approaches in research training, education, and coaching of students from diverse backgrounds and early-career faculty. The faculty also bring a deep familiarity and history of engagement with colleges and universities in Mississippi and state-of-the-art research resources and infrastructure. The UMMC GTEC faculty and mentors are experienced investigators who have a reliable and consistent track record of federal grant funding, peer-reviewed publications, graduate education, and a passion for developing and coaching the next generation of biomedical scientists dedicated to improving the health of Mississippians through science. They are scientific and educational leaders at many of the leading research institutions in the nation, including those in Mississippi. These faculty have influenced the policy and practice of funding agencies, created new paradigms and conceptual frameworks, impacted legislation regarding health issues, and hold promise for leading change in treatment approaches for a range of vulnerable population groups.15 The UMMC GTEC faculty believe that the research training and mentoring program prepares Smith Scholars with intense interactive experiences that will allow them to observe and participate in the entire research process. They also believe that the UMMC GTEC will complement and extend the Scholars’ doctoral and health professional programs. Participation in the UMMC GTEC allows Smith Scholars to expand their professional networks and prepare to pursue future career opportunities in biomedical research, including postdoctoral fellowships, residencies, and early-career faculty positions. The 2019 Robert Smith, MD, Graduate Scholars, the first cohort to be admitted, are in the second year of the program. They represent Mississippi State University, the University of Mississippi, University of Mississippi Medical Center, University of Southern Mississippi and Tougaloo College. Their biomedical sciences areas include kinesiology, health and kinesiology, kinesiology and exercise physiology, population health science, and biostatistics and data science.

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Shared and Unique Characteristics of Undergraduate and Graduate Training and Education Centers

• passion, persistence, and dedication

The three Training and Education Centers demonstrate shared and unique characteristics. For example, all three Training and Education Centers feature biomedical training courses, research internships, and career guidance. All three Training and Education Centers are responsible for program assessment, manuscript writing, and submitting applications for Diversity Supplements. These are all task expectations by the NIH/NHLBI that require written semiannual and annual reports by each center. Mentoring is a prominent component of career guidance and research internships. Undergraduate Training and Education Center and Graduate Training Education Center (GTEC) and UTEC Scholars are mentored throughout their Training and Education Center matriculation, and many mentor/mentee relationships are ongoing following graduation. A critical characteristic of the success of the Training and Education Centers is the philosophy and practice of collaboration and partnership. Tougaloo has participated in a 50-year partnership with Brown University. The partnership began in 1964 and includes an Early Identification Program of eligible JHS Scholars for entry into the Warren Alpert School of Medicine at Brown University. Most of the Early Identification Program students at Tougaloo College are JHS Scholars. In 2010, the School of Public Health at Brown also began offering an Early Identification Program for Tougaloo students. One scholar has completed the program with a Master of Public Health degree. The UTEC partners with institutions, agencies, and institutes for the placement of JHS Scholars during two Summer Research Internships. The UTEC Partnership Model is published in Ethnicity and Disease, Winter 2020.8 The GTEC at JSU partners with experienced professors who hold appointments at University of California, Los Angeles, and Xavier University in New Orleans through its Learning Communities, Quarterly Seminars, and Mentorship Programs. The GTEC at UMMC partners with Vanderbilt University, University of California Los Angeles, University of Texas Southwestern Medical Center, and the East Carolina University School of Medicine through its administration, mentorship, and faculty activities.

• multiple mentored research opportunities

An additional unique characteristic of the Training and Education Centers is the grounding of each Training and Education Center in a prominent academic home that provides a supportive environment for the development of research and related skills at both the undergraduate and graduate levels. The UTEC at TC operates under the auspices of the Natural Sciences Division. Faculty in this division serve as mentors and coaches for scholars. The GTEC at JSU operates under the auspices of the School of Public Health. The GTEC at the UMMC is extremely fortunate to have the opportunity to affiliate with the newest UMMC School, the School of Population Health. Features Required to Replicate the JHS Training and Education Center Model Some of the features required to replicate the JHS Training and Education Center model are as follows:

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• a supportive organizational structure and environment • collaboration with other institutions and agencies • approaches to strengthen students’ reading, mathematics, and science skills • approaches to develop students’ skills in critical thinking and scientific inquiry • role models, mentors, coaches, sponsors, and teachers • career guidance • rigorous course work in cardiovascular epidemiology, social epidemiology, and biostatistics and research • opportunities for students’ research presentations and publications • financial support • tracking mechanisms • student selection • student tracking • committed leadership • dedicated faculty • experienced scientists/investigators The training and education programs are critical in fulfilling the NHLBI and the JHS’s mission to address health disparities. The Scholars programs have been a substantial success as an effective strategy to increase the number of minority students entering public health and related careers. Over 20 years, substantive plans have enhanced the programs, such as detailed course syllabi, exposure of students to clinical and bench investigators, and dissemination of data on program design, implementation, results, and evaluation. The JHS training and education program is a model that can be replicated to diversify the future biomedical workforce. Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN2682 01800014I), the Mississippi State Department of Health (HHSN26 8201800015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services.

References

Author Information

1. Report of the Secretary’s Task Force on Black and Minority Health. Volume IV. Cardiovascular and Cerebrovascular Disease, Part I and Part II. Department of Health and Human Services; 1986. 2. Smedley B, Stith AY, Nelson AR. Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. National Academies Press; 2003. 3. McGee R, Saran S, Krulwich TA. Diversity in the biomedical research workforce: Developing talent. Mt Sinai J Med. 2012;79(3):397-411. 4. Taylor HA. The Jackson Heart Study: An overview. Ethn Dis. 2005;15(4 suppl 6):S61-S6-3.

Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson). Principal Investigator, Jackson Heart Study Undergraduate Training and Education Center, Tougaloo College, Tougaloo, Mississippi (White). Professor Emerita of Biology, Former Principal Investigator, Jackson Heart Study Undergraduate Training and Education Center, Tougaloo College, Tougaloo, Mississippi (Srinivasan). Principal Investigator, Jackson Heart Study Graduate Training Education Center, Jackson State University, Jackson, and Mississippi (Payton). Principal Investigator, Jackson Heart Study Graduate Training and Education Center, University of Mississippi Medical Center, Jackson, Mississippi (Beech). Jackson Heart Study, Program Official, National Heart, Lung, and Blood Institute, Bethesda, Maryland (Nelson).

5. NIH. Research on Interventions That Promote Research Careers (2007, 2008) (RO1). Department of Health and Human Services. A ccessed March 27, 2020. https://grants.nih.gov/grants/guide/rfa-files/RFA-GM-08-005.html. 6. Harris KK, Henderson FC, White WB, Mohamed A, Srinivasan A. The Jackson Heart Study: Preparing African American high school students for health careers and research. Ethn Dis. 2020;30(1):25-32.

White

Henderson

Srinivasan

Payton

Beech

Nelson

7. White WB, Srinivasan A, Nelson C, Fahmy N, Henderson F. Capacity-building for career paths in public health and biomedical research for undergraduate minority students: A Jackson Heart Study success model. Ethn Dis. 2016;26(3):399-406. 8. White WB, Henderson F, Harris K, Mohamed A, Srinivasan A. The role of public health partnerships in the success of the Jackson Heart Study UTEC. Ethn Dis. 2020;30(1):41-46. 9. National Heart, Lung, and Blood Institute, National Institutes of Health. Jackson Heart Study Renewal Training and Education Center Request for Proposal HHSN26818HV00009R. Accessed March 30, 2020. https://www.fedcon nect.net/FedConnect/default.aspx?ReturnUrl=%2f FedConnect%2f%3f doc%3dHHSN26818HV00009R%26agency%3dHHS-NIH&doc=HHSN 26818HV00009R&agency=HHS-NIH 10. Jackson State University. Graduate Training and Education Center. Accessed March 27, 2020. https://www.jacksonheartstudy.org/About/Participating-Insti tutions/Jackson-State-University. 11. Jackson State University. Jackson Heart Study Graduate Training and Education Center; Research Camp. Accessed March 27, 2020. www.jsums.edu/gtec/ research-boot-camp

Helping you build a more secure future. We invest our own money alongside yours, so we are invested in your success.

12. Jackson State University, Jackson Heart Study, Graduate Training and Education Center. Accessed March 27, 2020. www.jsums.edu/gtec 13. Graduate Training and Education Center University of Mississippi Medical Center. Accessed March 27, 2020. https://www.jacksonheartstudy.org/Educa tion/Graduate-Training-andEducation-Center-UMMC. 14. Graduate Training and Education Center University of Mississippi Medical Center About Us. Accessed March 27, /2020. https://www.umc.edu/SoPH/Depart ments-and-Faculty/Population-Health-Science/Education/GTEC/About-Us. html. 15. University of Mississippi Medical Center - Graduate Training Education Center Faculty. Accessed March 27, 2020. https://www.umc.edu/SoPH/Depart ments-and-Faculty/Population-Health-Science/Education/GTEC/Our-Pro gram-Faculty.html

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JHS Staff and Scientific Conference Participants at the Jackson Convention Center Scientific Conference 2010

Dr. Bettina Beech with Participants at the Jackson Medical Mall

Scientific Conference Participants 2010

Dr. Malcolm Taylor Speaking at the 2010 Scientific Conference

SCIENCE OF MEDICINE

The Jackson Heart Study: Enables the Next Generation of Clinicians and Researchers through Mentoring ERVIN FOX, MD, MPH; MARIO SIMS, PHD; HERMAN A. TAYLOR, MD, MPH; SOLOMON MUSANI, PHD; FRANCES C. HENDERSON, EDD

entors make you feel cared about, challenged, and supported. They help you to gain confidence in yourself and your abilities. Often, mentors see in you the potential for your career future that surpasses your own vision for yourself. The goal of mentoring is to provide students with the guidance necessary for them to progress along a career path, training in scientific research skills, and individual development. Mentoring is a voluntary, personal, significant, and enabling relationship that is mutually beneficial to the mentor and the mentee. Mentoring helps the mentee to feel fortified and empowered to navigate his/ her way through sometimes complex career pathways. Mentors feel empowered by the process of giving and sharing time, expertise, guidance, encouragement, and support when and where needed to

smooth the path toward the mentee’s career objective. Mentoring is not limited to either a hierarchical structure or a specific organization. Mentors may be colleagues, relatives, friends, teachers, counselors, or supervisors. Mentors may be role models in your chosen career or other careers; however, not all role models are mentors. Mentors are best identified by how they help you and how they make you feel about yourself. In the area of personal development, mentors help you by actively listening to your dreams and aspirations and reflecting on what you communicate both verbally and nonverbally for your reexamination. They help you by asking pertinent questions that allow you to elaborate on your answers. In addition to the scientific focus on a mentee’s research, good mentoring includes the cultivation of a variety of skills. Such skills can

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experiences can be provided that would help best position the mentee to achieve these goals. The mentor-mentee experience should be more than just helping the mentee complete a research project or just to pull off an abstract or paper. The mentor should bring that up early in the process. Also, the experience does not have to be limited to one mentor; it can be a network of mentors working together to advance the goals of the mentee.

Dr. Ervin Fox and Dr. Montoya Taylor

include management, communication, and a thorough understanding of the ethical and social issues surrounding biomedical and behavioral research.1 The mentors’ interest in students and commitment to guiding them in their personal and professional development, along with the demonstration of enthusiasm for the mentor role, is a winning combination to help students develop essential career skills. Mentees are encouraged to explore and value a variety of perspectives, backgrounds, and approaches among potential mentors.2 Mentees are also encouraged to seek exposure to multiple career path options to build awareness of the breadth of scientific career options and opportunities.3 Mentees require training in personal interaction skills such as negotiation, persuasion, diplomatic and networking skills which are generally acquired by watching the behavior of others.4 Perspectives on Mentoring in the Jackson Heart Study Mentoring in the Jackson Heart Study (JHS) occurred on the undergraduate, graduate, postdoctoral, and junior faculty/investigator levels. Four investigators share some of their experiences being mentored and serving as a mentor. Dr. Ervin Fox, Cardiologist and Researcher, has mentored approximately 35 undergraduate and graduate students, fellows, and junior investigators during 20 years of affiliation with the JHS (May 2001 to February 2020) he reflects: When I think of mentoring, I think about the specific roles that the mentor plays in working with the mentee, the role that the mentee plays in working with the mentor, and the goals that they set out to achieve together. I think about the benefits generated from the relationship, as well as the challenges. Communication needs to always be present for the mentor-mentee relationship to start, develop, and grow. I think for the mentor, it’s important from the very start to understand what the mentee wants out of the relationship. The mentee should communicate personal goals, career goals, and personal challenges (obstacles) he or she perceives may stop him/her from achieving these goals. The mentee and mentor should work together to decide what

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I prefer to rely on the research project as a means to establish a platform for me to teach the mentee about heart, lung, and blood phenotypes, and risk factors associated with cardiovascular disease. I prefer to teach the mentee about one or two phenotypes and then broaden the discussion to the big picture; we discuss how African Americans are at higher risk for death from heart disease at the most productive time of their lives (during their 40s and 50s). I give them information on the growing racial disparities in heart disease outcomes that sparked the idea of the JHS. I go over with the mentee the American Heart Association’s strategic goals that currently call for improving the cardiovascular health of all Americans by 20% while continuing to decrease deaths from cardiovascular diseases and stroke by 20%. So, my approach has been to give the mentee an overall picture of heart disease and health disparities as it relates to African Americans. I then use that as a platform for mentoring. I typically extend our discussions beyond the research project to include all other important aspects of the mentor-mentee relationship, such as personal and career goals. With the research portion of mentoring, after reviewing the phenotype and the tools used in the JHS to measure it, I go over the study design. I have the mentee work with a statistician to learn about the statistical methods used. After the dataset is generated, we work together to interpret the results and determine the best way to present these results to the community and other scientists. During the career portion of the mentoring experience, for those mentees interested in medicine, mentees complete rounds with me and my colleagues on cardiology wards, consults, clinics, and in the noninvasive laboratories. For those mentees interested in pharmacy, I connect them to academic pharmacists, and they complete rounds with the pharmacists in the hospital and the clinics. Some mentees are interested in surgery, so I give them access to a surgeon at the University Medical Center. So, during this part of the mentoring experience, I give the mentee access to rounds with other doctors at the University who are very good clinical mentors. Networking among mentors makes the experience more complete for the mentee. Different mentors give the mentee a variety of career options within medicine. The mentee gets a chance to understand that some doctors go on to choose a private practice; others choose academics, and among those doing academics, some choose strictly clinical, and others find a balance between research and clinical. Further, among the

network of mentors, mentees find out how different doctors early on in their training put themselves in a strategic position to obtain their career goals best. Mentees often have more practical questions, such as how to best prepare for board exams? How to balance school and study for the boards? When to apply to medical school or pharmacy school? Often the older mentors are 20-25 years out from that time in training, so I provide the mentees with access to cardiology fellows, residents, and medical students who are only two or three years out from that time in their training. Therefore, when mentees round with me, they are not just learning about heart, lung, and blood phenotypes, and measurement tools; they are also learning about various aspects of training and the clinical aspect of healthcare. Mentees have a chance to openly ask questions, including questions they are more comfortable asking of someone closer to their age. Mentors May Be Relatives, Colleagues, Friends, Teachers, Counselors or Supervisors Dr. Fox shared some examples: When I think of great mentors in my life, my father, mother, and siblings were my first set of mentors. I am the youngest in my family, so every one of them was a mentor in some way. My father was smart yet very humble and an academic leader in the local community. He was the principal of one of the local high schools, and he and my mother made education of uppermost importance in our family. Both of my parents had received four-year college degrees in education (uncommon for African Americans in the 1950s). Later both my parents became part of the Clarksdale, Mississippi school system. Both received Master’s degrees while we were young, so we got to see them work toward their Master’s degrees and several credit hours beyond. That registered with my siblings and me the importance of a good education. Among my siblings, my oldest brother was valedictorian, my sister was third in her class, one brother was fourth in his class, and the other brother was salutatorian. All the boys in the family were star students, an honor given to those with the highest score on the college entrance exam. So, I constantly felt it was important to step up in my academics because my parents and siblings stepped up. Accordingly, much of my perspective on education and work toward a professional career came from that initial exposure at home. Additionally, my priorities, ethics, and how I put serving people at the forefront of what I do come from that initial exposure at home. That perspective of work was always important to both my father and mother. My first mentor in college was my supervisor in biological engineering at Mississippi State University. At first, I was strictly in engineering. I wasn’t really connected to the premedical curriculum. Toward my last two years of college, I sought out the premedical school advisor, Dr. Downer, who helped me through the process of applying to medical school. Once I got into medical school, I had several mentors, including Ms. Ruth Gordon, Ms. Cheryl Wilburn, and Dr. Leon Anderson, who were over the University of Mississippi Medical Center (UMMC) Minority Student Affairs. They gave me, and other minority students, access to a space to study, access to books, old tests, and preparatory classes before starting medical school. The staff at Minority Student

Affairs helped to provide jobs so we could get some money in the summertime and provided us opportunities to tutor younger people who also wanted to go to medical school. We helped conduct Medical College Admission Test prep for college students who were interested in pursuing medicine. That whole process prepared me to be a mentor later during my career as an academic cardiologist. In residency at Washington University, my biggest mentor was my colleague Debra Frenchie, MD. She had completed Washington University as an undergrad, Washington University Medical School, and Washington University residency, so she knew much inside information about the city and the university medical system, which was vitally important for me to successfully move forward in internal medicine residency. In general cardiology at Tulane, I had three mentors: Dr. Berenson, who was the principal investigator for the Bogalusa Heart Study, who took an interest in me and my development as a research cardiologist. Dr. Matheny, my first African American faculty mentor, could appreciate issues specific to being African American in a predominately White environment, helped me develop my clinical skill set while giving personal advice about life and career. Dr. James Talano, who was over the cardiology program, appreciated my interest in echocardiography and research, and encouraged me to submit research and apply for a clinical-research echocardiography fellowship at Massachusetts General Hospital. Once I got to Massachusetts General, I would say that every one of the attending echocardiography readers served as mentors. This included Dr. Michael Picard, Dr. Arthur Raymond, Dr. Robert Levine, Dr. Mary Etta King, and Dr. Christopher O’Donnell. Dr. O’Donnell got me interested in the whole idea of working as a cardiovascular epidemiologist and toured me around the Framingham Heart Study and suggested this could be a good career choice for me. He informed me about the Jackson Heart Study and suggested this would be a great opportunity for me to start a career. Under his suggestion, I went on to attend Harvard University School of Public Health and received my MPH. Finally, Dr. O’Donnell helped guide me through negotiations with the UMMC when I signed on in 2001.

Dr. Alyce Stewart and Dr. Cheryl Clark at the Jackson Heart Study Scientific Conference 2010

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Dr. Gary Gibbons (seated in middle) Dr. Mario Sims (standing on right) and Jackson Heart Study Undergraduate Training and Education Center Scholars

Since becoming a cardiologist at the UMMC under the physician-researcher track, Dr. Emelia Benjamin and Dr. Vasan Ramachandran have served as mentors, particularly in my early training. Dr. Benjamin began working with me in 2001 during the time I was going to the Harvard School of Public Health (Dr. Chris O’Donnell introduced us). Dr. Benjamin played an important role in my career by working with me on a number of my first research projects and subsequent publications. She helped me in obtaining an American Heart Association research award and later my first R01 Research Project Grant (Establishing a Vascular Function Lab in the JHS). Dr. Ramachandran has been my primary mentor since 2007. He worked with me on many papers, including the JHS genetic papers under the Concussion Assessment Research and Education consortium, and papers related to biomarkers and clinical outcomes, including heart failure. Most recently, I work with Dr. Ramachandran in a new National Heart, Lung, and Blood Institute (NHLBI) cohort study called RURAL (Risks Underlying Rural Areas Longitudinal Study). I frequently call on many of my past mentors to work with as collaborators with me and to discuss career goals. My past mentors have become my colleagues, collaborators, friends, and advisors. I hope I will serve in a similar capacity to mentees I work with as they move forward in their careers. (Ervin Fox, MD, MPH Interview June 14, 2018)

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Team Mentoring: Dr. Ervin Fox and Dr. Solomon Musani Dr. Solomon Musani and Dr. Ervin Fox have worked as colleagues at the JHS since 2008. In addition to numerous one-to-one mentor/ mentee relationships, they have often mentored as a team. Dr. Musani has mentored 15 individuals during his time at the JHS. Dr. Musani shares his mentoring trajectory and some of his team mentoring experiences with Dr. Fox. Team Mentoring: Dr. Solomon K. Musani “I first met Dr. Ervin Fox at Washington University in St. Louis while attending a NHLBI-funded Summer Institute Program to Increase Diversity in Cardiovascular Genetics in the summers of 2007 and 2008. At the time, I was completing a four-year engagement at the Section of Statistical Genetics, Department of Biostatistics at the University of Alabama at Birmingham that began as a postdoctoral fellowship in statistical genetics and obesity, but later morphed into an instructor position courtesy of a Diversity Supplement award for an additional two years. What I remember most vividly about my first encounter with Dr. Fox is his intense passion for research in health disparities. Before joining the University of Alabama’s Section of Statistical Genetics, I completed a doctoral degree in quantitative genetics and application of genetics to the improvement of livestock at the

University of Guelph in Ontario, Canada. As a native of Kenya, where livestock agriculture is the mainstay of the economy, I was motivated to seek ways of improving the productivity of the native livestock breeds through introducing genes from highly producing breeds of livestock. For four years (1995-1999), I mentored agricultural extension officers on how to use animal breeding techniques as a strategy to improve yield. My interest in genetics and its utility broadened during my doctoral studies when I understood that genetics could also help in understanding public health and that the genetic methods and study designs used in livestock apply to human genetics. This understanding motivated me to pursue postdoctoral training in statistical genetics and obesity under the mentorship of Dr. Hemant K. Tiwari and Dr. David B Allison. During my postdoctoral fellowship, I attended several structured courses in statistical genetics and genomic epidemiology at internationally recognized research institutions such as Harvard University School of Public Health, Washington University Saint Louis School of Medicine, University of Colorado, Boulder, Rockefeller University and Johns Hopkins University, where I earned graduate credits. However, the most important lesson I learned from my mentors is the significance and the role of mentorship. As a newly arrived immigrant to the United States, I relied on my mentors for guidance, emotional support, and role modeling. I am wholly indebted to my mentors for their help that prepared me to be an investigator and to mentor others. Equipped with this training and experience, I joined the JHS at Dr. Fox’s invitation. He informed me that the JHS needed someone with my skills. He called Dr. Herman Taylor, the Director and Principal Investigator of the JHS, and as the saying goes, ‘the rest is history.’ That was September 2008. When I joined the UMMC as assistant professor and statistical geneticist at the JHS, I was immediately attracted to a robust mentoring approach developed by Dr. Fox and Dr. Taylor. The approach is focused on the needs of the African American community, namely, to prepare young African American/ minority students for careers in health sciences. Previously, I had not met or interacted with a researcher or researchers with a specific and infectious passion for the community. Thus, on becoming an investigator with the JHS and by collaboration with other investigators, I became acutely aware of the needs of the African American community, particularly that of capacity building through mentorship. It is with this background that we came up with team mentoring, a strategy that has allowed me to work with other JHS investigators in mentoring young and upcoming scholars. I use my quantitative skills to guide research design, data management, and statistical analysis. In mentoring medical students, for instance, Dr. Fox and Dr. Taylor provided the biological and clinical background of research questions, while I summarized and explained the data to answer the research question of interest. I also guided the students in converting research questions into testable hypotheses. Every

mentee had to learn basic skills such as how to interpret the output from commonly used statistical analysis packages such as SAS, SPSS, and R. In addition, as a team we guided the student in writing abstracts, posters, and oral presentations. We were adamant in making sure a student presents several times before the team before presenting at a regional or national scientific meeting. This approach enables us to work together in helping team-mentor several recipients of Diversity Supplements as well as undergraduate JHS Scholars interested in research. To reinforce the culture of team mentoring, I invite my former mentees to mentor new students, particularly in the areas of packages for statistical analyses. Besides providing guidance in the specific technical skills, it has also become clear to me that mentoring relationships vary from one individual to another. For example, working with undergraduate students, I noticed a need for mentorship in making career choices. As such, I have helped my mentees (particularly senior undergraduates) in exploring careers in medicine and public health. Other ways of mentorship that I have applied include sharing my own career path, and I have noticed that my story resonates with many mentees.” (Solomon Musani, PhD Interview January 26, 2015) Dr. Fox described yet another team mentoring approach that included the two of them, along with Dr. Sims working with a local high school science teacher who is studying toward a Master’s degree in Environmental Research. Dr. Fox explained: “We are using the vascular laboratory to do a study on the impact of environmental factors on endothelial function; he is getting help with the data on environmental stress from Mario (Dr. Sims), so we all tag team him and push him along. Solomon (Dr. Musani) deals with the statistical analysis.” (Ervin Fox, MD, MPH Interview January 26, 2015) Building Mentoring Networks Dr. Mario Sims, a Los Angeles native, came to the JHS in 2003, following his doctoral study at the University of Wisconsin at Madison.

Dr. Susan Shurin and a Student

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I prefer to rely on the research project to be a means to establish a platform for me to teach the mentee about heart, lung, and blood phenotypes, and risk factors associated with cardiovascular disease. I prefer to teach the mentee about one or two phenotypes and then broaden the discussion to the big picture; we discuss how African Americans are at higher risk for death from heart disease at the most productive time of their lives (during their 40s and 50s). I give them information on the growing racial disparities in heart disease outcomes that sparked the idea of the Jackson Heart Study. I go over with the mentee the American Heart Association’s strategic goals that currently call for improving the cardiovascular health of all Americans by 20 percent while continuing to decrease deaths from cardiovascular diseases and stroke by 20 percent. So, my approach has been to give the mentee an overall picture of heart disease and health disparities as it relates to African Americans. I then use that as a platform for mentoring. I typically extend our discussions beyond the research project to include all the other important aspects of the mentor-mentee relationship, such as personal and career goals.” —Ervin Fox, MD, MPH; Professor of Medicine, Department of Cardiology, UMMC

Dr. Sims joined the JHS team as a Social Epidemiologist. He begins his story about being mentored with actively building relationships: “When I came here, it was a progression from what I was doing in Wisconsin. I’d had a Diversity Supplement, so the next step was to write a K-Award, so I started building relationships with people who might be mentors later. Since Dr. Taylor was not a Social Epidemiologist, he was my mentor for professional development, networking, and timelines. He reached out to Dr. David Williams at Harvard to mentor me, as well as Dr. Ana Diez Roux, who had a national presence, and she put me in touch with others that could help. Also, Dr. Sharon Wyatt mentored me on the UMMC system and cardiovascular disease literature from a sociological perspective, editing, and collaboration. Dr. Tom Payne and Dr. Tom Mosley mentored me peripherally.” Dr. Sims has mentored approximately 43 undergraduate and graduate students, fellows, and junior investigators during 17 years of affiliation with the JHS. He is passionate about building research capacity locally through mentoring. “We are just trying to be creative and use our networks but also develop our students. Our local people, local, that’s so important to me. I know the national people are there at Chapel Hill, the Harvard’s; I’m interested

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in the local ones. The national ones will come to your door, they will find you, but the local Jackson investigators/trainees, the National Heart, Lung, and Blood Institute wants to see that more than anything.” “It’s hard to say ‘no’ when students come and want to work with you. It’s hard to turn them down. I think locally, it’s really a challenge for students, at least in my area, social epidemiology, to find people. Because the School of Population Health is new, they’re building, and it’s hard to find people. They are not as established as faculty who have time to do mentoring, they are teaching, and they are building, and that takes time. And, nobody is doing psychosocial epi around except me, and I’m one of the few, and that’s what draws people to the JHS data, the social determinants, that’s a piece of it, it’s not the only topic area, we know that, but they say, ‘I want to work with Mario/Dr. Sims,’ and that’s when I bring in the Psychosocial Working Group colleagues saying, ‘Why don’t you work with such and such’ because I just can’t work with everybody. It’s starting to work; we started on a smaller scale. We can’t send everybody out. We started with one or two students, hand-picked them and tried to match them, for example, on topics or areas where the mentor has published. And, I’ll still work with them as a coauthor and comentor.”

For undergraduates, there are different metrics because they only have a certain set of skills that they can employ in the research framework so that they can do literature reviews, lay summaries, or presentations of various sorts. They work with other mentors off-site, summer programs, and some of their formal course work, and also help with community events. I think that’s one of the things that they have on the books as one of the requirements, but they just expect the undergraduates to be available for some of those community events. The JHS Scholars have read some of the articles, they’ve talked about research, and that’s what I’ve started doing more with my Tougaloo Scholars, like talking about the literature and how to prepare yourself for a career in writing and what it means. I show them some of my writings, and I try to highlight more of that than I have in the past. So, for the graduate students, any of my Graduate Training and Education Center students that I have, they can do anything from work on a grant to doing a statistical program package, this is what I expect students to do. I have them learn a statistical language; there are Coursera courses on-line, and this helps them start writing and prepares them to write research proposals. You know, in the Jackson State University Graduate Training and Education Center, they have the Daniel Hale Williams Scholars, and at the University of Mississippi Medical Center Graduate Training and Education Center, they have the Robert Smith Scholars. They have didactic classes and regularly scheduled meetings with their mentors. I’ve had great mentors, and I had three African American males: one is a college president at Pomona Pitzer, Dr. Melvin Oliver; Dr. Walter Allen, he’s at the University of California Los Angeles; and Dr. Lawrence Bobo, he’s at Harvard University. And Dr. James Johnson, he’s at the University of North Carolina, Chapel Hill. I saw them doing research, and I said, “That’s what I want to do.” They were grappling with the issues of poverty in southcentral Los Angeles and what it means for economic mobility and incarceration, and I thought, “what about the health spin on that?” And, when I got to graduate school, I said, “What about the epidemiologic approach to some of what their predictors from their research from a sociological and socioeconomic standpoint.” So, they were really helpful; good examples, hard workers, and they really motivated me. They said, “go to graduate school, and we’ll help you out.” So, I’d always call them and let them know what I was doing, and then when I got the Ford Foundation Doctoral Dissertation Fellowship, I had Dr. Franklin Wilson and then when I got to Michigan as a Post-Doctoral Fellow, I had David Williams. So, I’ve always had really good heavy hitters, modeling what they were doing and giving it to me, and in turn, that’s what I try to do for other students. That’s one of the reasons why I came here on the grant; one of my aims when I came here was to develop the pipeline of African American students in training for the biomedical sciences. I want to, in some way, birth in them a hunger and a passion for research. And, if we don’t do it, who’s going to do it?” (Mario Sims, PhD Interview, October 28, 2019)

In the role of JHS Principal Investigator, Dr. Herman Taylor mentored junior investigators and junior faculty such as Dr. Fox, Dr. Sims and Dr. Musani, and approximately 23 undergraduate, graduate, and postdoctoral students and fellows during his 15 years with the JHS. Dr. Taylor reflects on the role of the JHS Principal Investigator as mentor: Jackson Heart Study Principal Investigator as a Mentor “When I think about the role of the JHS Principal Investigator as a mentor, I think he would be the person who would mentor young investigators, junior investigators, as well as, somewhat senior investigators who are not at his level, so he can respond to scientific questions, career choices, ways in which each of the investigators can contribute to the study and ways in which the study can serve as a forum for them. I see him as an overarching figure that provides a framework for each one to fill the slots. The JHS principal investigator would guide them on what they need to do within the study. I see him building a mentoring mechanism, like a system of mentoring. Mentoring in the JHS is such a critical key aspect of what the heart study is all about considering the lack of pathways for aspiring African American investigators. So, helping to encourage experienced researchers to bring young African American investigators into their circles by including them as authors was important. More often than not it led to an occasion for a young African American investigator to be included with some fairly sophisticated people who have been in the game a long time; they could be part of the discussion they would be on the email chain, and they would be engaged and involved. When I think of the mentoring relationship, I think it means someone who will guide and walk alongside someone who has some fairly specific needs in order to progress in their career. Different people need different things; the point in time, along with the career trajectory matters, the mentees’ goals matter, and points where the mentor and mentee mutual interests overlap matters. I think it also implies that the mentor-mentee relationship includes some level of advocacy or you could call it sponsorship; where you go to bat for people at critical junctures, and that could be something as simple as letters of recommendation and that sort of thing, and it could be you know standing up for someone who hasn’t as of yet found their voice. Now I am quick to say that part of being a mentor should be to help somebody find their voice. They are not to be babied or coddled; they have to develop their strength, and you are there to help with that. Sometimes that means pointing out for that person their strength and/or encouraging, endorsing, or letting them know that they have this strength as if they underestimated themselves. Another thing about mentoring is that the mentee has to be coached in the reciprocity of a mentor/mentee relationship; it is good for them to understand early that it is a two-way street. It’s not just all the mentor giving, but the mentee can do something that helps the mentor, such as helping to put together a paper the

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mentor is writing or offering to write an abstract depending on the mentee’s level of development.

The Jackson Heart Study Mentoring Model: Frequently Used Terminology

It was important for the JHS to be a hub for mentorship. So, I leveraged my relationships as much as I could to bring in as many other people in the field across the country that I could, and I think others did the same thing as time went on. Everyone has a network, and I think we recognize that mentorship often means acknowledging that you are not the one but the mentoring part of it is to help make the connection with somebody who knows, likes, and respects you to say ‘hey, here is somebody that has talent and promise and would you comentor this person with me’. Comentoring was a role I often played with someone that I respected, and that I knew would be just the right person for this individual. So, mentoring at the principal investigator level took much understanding that my network was as important as I was in terms of helping people get the mentoring they needed.” (Herman Taylor, MD MPH Interview November 19, 2019)

The following terms are frequently used in this article to describe and discuss mentoring approaches:

Former Deputy Director’s Synthesis The JHS is a hub for mentorship. It is a network of information access. The principal investigator, as a mentor, provides a framework for each one to fill the slots, builds a mentoring mechanism like a system of mentoring. The JHS mentors leverage relationships to make connections with experts in the mentee’s area of interest and serve as comentors. A mentor’s network is important in terms of helping students, scholars, fellows, junior investigators, and others get the mentoring they need. In the JHS, the mentor/mentee relationship addresses responsibility, communication, challenges, benefits, and setting goals to achieve together. It involves providing access to space, resources, other mentors, personal support, and encouragement, as well as exposure to both the science and career parts of mentoring. The science part of mentoring for Dr. Fox involves having the mentee learn the phenotype, how to identify and measure it, and the measuring tools required. He has his mentees work with a statistician to learn how to do the statistical methods and how to design the research, collect the data, and analyze it to obtain results that they then put together to present to the community and other scientists. Dr. Sims has his mentees learn a statistical language to help them start writing papers and research proposals. For the career part, the JHS mentors match mentors and mentees according to overlapping interests such as medicine, pharmacy, surgery, cardiology, academic cardiology, social epidemiology, psychosocial epidemiology, or social determinants of health. Mentors play multiple roles to meet the mentees’ needs. Part of being a mentor is helping mentees find their own voices. Networking among mentors is a major part of sharing, such as why some doctors choose to get into private practice while others choose academics; or why one doctor chooses to go strictly clinical and another chooses a balance between research and clinical. And, why some choose to put themselves in a strategic position so that they will have more career choices along the way. Mentors motivate, model, inspire, and ignite a passion for research in mentees.

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• access • advocacy • benefits • challenges • coaching • comentoring • communication • connections • leveraging • mentor • mentee • mentor/mentee relationship • networking • peer mentoring • reciprocity of mentoring • responsibility • sponsorship • team mentoring The Jackson Heart Study Mentoring Model In the JHS Mentoring Model, investigators who are mentors use the JHS data to address questions such as those related to cardiovascular disease risk factors, genetics, health promotion, clinical and subclinical disease, heart failure, stroke, vascular disease, cardiac structure and function, biomarkers, and social determinants of health. The disciplines represented included medicine, nursing, social epidemiology, sociology, genetics, psychology, dietetics, dentistry, and public health. Funding for the research is largely supported by the National Institutes of Health using K-Awards, Diversity Supplements, Research Grants such as R-21s and U01/RO1s; the NHLBI Traineeships; the Ruth Kirschstein National Research Service Award via the National Institute on Nursing Research and the National Institute on Minority Health and Health Disparities; and partially by a Robert Wood Johnson Fellowship. Mentoring Metrics Mentoring metrics include the mentor’s effectiveness in empowering the mentee to iteratively demonstrate professional growth and development and academic achievement in research-related roles.

Mentoring metrics include being a role model for mentees, engaging them in active communication, and providing timely and relevant feedback. Mentoring metrics for undergraduate and graduate students and research fellows differ across categories of trainees and in the expected outcome. For example, the expected outcomes of mentoring for undergraduate students are: demonstration of scientific writing skills in course-based research proposals and abstracts of their summer undergraduate mentored research experiences; oral presentations of their abstracts at local, regional and national conferences; contributions to mentors’ manuscripts; acceptance into graduate and/or professional schools upon graduation and/or participation in early identification programs in medicine or public health. Mentoring often results in helping mentees to clarify or confirm their career plans. A highly valued outcome for undergraduate and graduate students alike is the award of a Diversity Supplement from the NHLBI associated with their mentor’s research. Additionally, graduate students contribute to more manuscripts by conducting data entry, analysis and interpretation, contribute to their mentors’ presentations, as well as, make a presentation of their own work at scientific conferences; and participate with their mentors in obtaining grant funds to conduct research. For postdoctoral fellows, outcomes also include awards of funds for varying levels of research, which often lead to career and academic advancement such as promotion up the academic ranks and/or investigator categories. The JHS investigators comentor with investigators from Scientific Working Groups and Vanguard Centers to expand the network and capacity to meet the needs of mentees who want to use the JHS data in their research. The reciprocity of mentoring resulting from these collaborations is at least threefold. The mentee learns how to use the study data and write a publishable manuscript; the manuscripts coauthored by investigators and collaborators add to the total number of study publications, and mentors are provided with opportunities to expand their networks. The Jackson Heart Study Mentoring Model requires human, physical, and fiscal resources all operating within an environment of a dynamic network where each component enhances the other to enable an optimum outcome. The desired and observed outcome is enhanced individual, institutional, capacity to conduct, translate, and apply research designed to address cardiovascular health disparities among the African American community by researchers who include a visible number of African Americans and other minorities as well as nonminorities. The JHS seeks to empower minority communities to improve their health status through participating in and valuing research. The JHS is building the capacity of the research workforce in Mississippi and demonstrating a new pathway for clinicians who are seeking a balance between research and practice. For some, this

unique balance is forging new opportunities for their future career trajectories while moving us closer toward closing the gap in minority health status. n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN26 8201800014I), the Mississippi State Department of Health (HHSN26 8201800015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services. References 1. National Institute of General Medical Sciences. Evidence-Based Mentoring. Accessed March 27, 2020. https://www.nigms.nih.gov/training/strategicplanim plementationblueprint/pages/EvidenceBasedMentoring.aspx 2. National Institute of General Medical Sciences. Training for a Diverse Skill Set. Accessed March 27, 2020. https://www.nigms.nih.gov/training/strategicplanim plementationblueprint/pages/TrainingforaDiverseSkillSet.aspx 3. National Institute of General Medical Sciences. Multiple Career Paths. Accessed March 27, 2020. https://www.nigms.nih.gov/training/strategicplanimplementationblueprint/pages/MultipleCareerPaths.aspx 4. National Institutes of Health. Office of Intramural Research: Guide to Training and Mentoring. Accessed March 27, 2020. https://oir.nih.gov/sites/default/ files/uploads/sourcebook/documents/mentoring/guide-training_and_mento ring-10-08.pdf

Author Information Professor of Medicine, Department of Cardiology University of Mississippi Medical Center (Fox). Professor of Medicine, University of Mississippi Medical Center, Chief Science, Officer Jackson Heart Study, Jackson, Mississippi (Sims). Professor of Medicine, Director Cardiovascular Research Institute Morehouse School of Medicine, Atlanta, Georgia (Taylor). Assistant Professor, University of Mississippi Medical Center, Statistical Geneticist, Jackson Heart Study, Jackson, Mississippi (Musani). Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson).

Fox

Sims

Taylor

Musani

Henderson

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COMMENTARIES

The Jackson Heart Study: Pipeline to Practice JARED TAYLOR, MD

injustices like the Tuskegee Syphilis Study and the Nuremberg Trials. As a scholar, I learned how some of the past atrocities in the practice of medicine shaped the current public perceptions of research and medicine in vulnerable communities. This has helped in my career as a psychiatrist, as I treat patients from all walks of life.

am a board-certified psychiatrist and, I work full-time for the G. V. Sonny Montgomery Veteran Affairs Medical Center in Jackson, Mississippi. I knew as a high school student that I wanted to pursue a career in health care and serve the community where I grew up. As a Jackson native, I am proud to see the success of the Jackson Heart Study (JHS). Most people know about the research component (i.e., studying risk factors for cardiovascular disease in African Americans); however, there is also a training component that prepares undergraduate students for careers in public health and medicine. I was fortunate to be a part of the JHS Undergraduate Training and Education Center (UTEC) at Tougaloo College. The program provided boundless research opportunities and cultivated strong mentorship. The JHS helped me become culturally competent and sensitive when working with patients of various ethnicities and socioeconomic backgrounds. During my freshman year at Tougaloo College, I was selected as a JHS Scholar. The JHS UTEC curriculum included the following courses: Introduction to Public Health and Epidemiology, Research Methods in Public Health, Biostatistics, and Ethics in Medicine and Public Health. We learned about health disparities and past medical

The JHS has provided me with invaluable research experiences. Through the Mentored Summer Research Institute, which is a part of the UTEC curriculum, I spent two summers at the Harvard School of Public Health in Boston investigating the validity of body mass index in different ethnic groups. During my first summer in Boston, I had the unique experience of living with my mentor, Dr. Walter Willett, and his family. From biking to work on the hilly streets of Boston to seeing Pedro Martinez pitch at Fenway Park, I treasured my time in Boston. After college, I participated in a research fellowship with the National Heart, Lung, and Blood Institute (NHLBI) compiling the early findings of the JHS. The Jackson Heart Study Data Book: A Report to the Cohort and Community1 shows the percentage of JHS participants with chronic diseases (e.g. heart attack and stroke), as well as risk factors for cardiovascular diseases, like high blood pressure and high cholesterol. The unique aspect of the Jackson Heart Study Data Book is that it is geared toward participants and the Jackson community. It has easy to understand graphs and charts and includes heart-healthy recipes, artwork, pictures, and quotes from JHS staff. This is an important document because participants in the JHS represent all African Americans, family, friends, neighbors, coworkers, and church members. So, the things that affect JHS participants affect us all. At the NHLBI, I obtained a better view of how the JHS was a part of other national heart studies. Moreover, like Boston, I had a wonderful mentor, Dr. Paul Sorlie. We were both huge sports fans, and initially, that is how we connected. During that year at NHLBI, I can remember us going to a Washington Nationals baseball game and a University of Maryland men’s basketball game. While there, I took two graduate courses in epidemiology (Dr. Sorlie taught one of the courses). My fellowship was through the NHLBI Office of Minority Health, administered by Director Dr. Helena Mishoe, who was very instrumental in my success. In particular, the mentors associated with the JHS have helped so many students like me to obtain exceptional academic and personal

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Jackson Heart Study Scholars in the Undergraduate Training and Education Center Curriculum at Tougaloo College

Dr. Tangela Purnell, a former JHS Scholar at Tougaloo, now at Johns Hopkins University experiences that have led to successful professions. My JHS research experience fueled my desire to pursue a career in health care and ignited my passion for research. I completed medical school and residency at the University of Mississippi Medical Center. During my medical school matriculation, I was awarded a NHLBI Diversity Supplement (funding to participate in a researcher’s specific research project). I researched with cardiologist Dr. Ervin Fox at the University of Mississippi Medical Center, where I studied cardiac remodeling in JHS participants. I have been able to present my research findings at several conferences across the country and to contribute to a publication2 as a coauthor with Dr. Fox and other JHS investigators. My time with Dr. Fox was very enlightening and helpful for my growth as a student and as a person. We would often meet on Friday and Saturday nights at a local coffee shop to discuss our research. Not only did we talk about research, but Dr. Fox would share life lessons and wisdom.

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Mentorship is an essential component of success for any student. I have been fortunate to have numerous mentors help shape my professional development. My research mentors and the JHS staff always expressed positive words of encouragement, both on a professional and personal level. During my time as a scholar, I shadowed JHS researchers in the Examination Center, Coordinating Center, and Community Partnership and Outreach Office. I observed the inner workings of the JHS. The researchers wanted us to be an integral part of the success of the study. As I look back on my career, I realize the tremendous effect that mentors have had on my success. I would not have made it to this point without the encouragement and support of mentors. Today, I try to impart the same encouragement and guidance when I mentor students and residents. The JHS UTEC taught me the importance of medical research within the African American community. According to a 2015 report by the Association of American Medical Colleges,3 there has been a decline in the number of African American men in medicine. Programs like the JHS UTEC foster opportunities to cultivate the knowledge, skills, and abilities for success in careers in public health and medicine for underrepresented groups. I am forever grateful for the various research, training, and mentorship experiences I was afforded as a JHS Scholar. n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN2682018

“As I look back on my career, I realize the tremendous effect that mentors have had on my success. I would not have made it to this point without the encouragement and support of mentors. Today, I try to impart the same encouragement and guidance when I mentor students and residents.” —Jared K. Taylor, MD

Jackson Heart Study Scholars Visiting the National Institutes of Health, Summer 2017 00014I), and the Mississippi State Department of Health (HHSN268201800015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The author has no conflicts of interest to disclose. The author wants to thank the staff and the JHS participants. The views expressed in this manuscript are those of the author and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services.

2. Fox ER, Musani SK, Samdarshi TE, et al. Clinical correlates and prognostic significance of change in standardized left ventricular mass in a community-based cohort of African Americans. J Am Heart Assoc. 2015; 4(2):e001224. 3. Association of American Medical Colleges. Altering the Course, Black Males in Medicine. Association of American Medical Colleges, 2015. Accessed March 29, 2020. https://store.aamc.org/altering-the-course-black-males-in-medicine.html

Author Information Staff Psychiatrist, Mental Health Outpatient Clinic, G.V. (Sonny) Montgomery Veteran Affairs Medical Center, Jackson, Mississippi (Taylor).

References 1. National Heart, Lung, and Blood Institute. The Jackson Heart Study Data Book: A Report to the Cohort and Community. National Institutes of Health; September. 2008. NIH Publication No. 08-5848. Accessed March 29, 2020. https://www. nhlbi.nih.gov/health-topics/all-publications-and-resources/jackson-heartstudy-data-book

Taylor

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The Next Ten Years: Projections from the Jackson Heart Study Center Directors ADOLFO CORREA, MD, MPH; MARINELLE PAYTON, MD, PHD; WENDY WHITE, PHD; VICTOR SUTTON, PHD; FRANCES C. HENDERSON, EDD

Primary Focus of Research during the Next Ten Years

s we prepared to celebrate the 20th Anniversary of the Jackson Heart Study (JHS), the principal investigators of the Centers shared their projections for the next ten years in individual interviews. All center directors responded to broad questions about projections for the next 10 years, gaps that still need to be addressed, and reciprocal benefits of the JHS and the Jackson area physician/ primary care provider community during the next 10 years. Dr. Correa, director and principal investigator for the JHS and principal investigator of the Coordinating Center and Field Center sees six areas that will probably be the primary focus of research: heart failure, brain health, genomics, atrial fibrillation, blood pressure and social determinants of health.

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Dr. Correa elaborated, “We’re going to be collecting new data on cardiac structure and function. We are seeking a better understanding as to why there is a higher risk of heart failure among African Americans, especially those at an early age. I think another important area of focus will be brain health. One of the components of this next exam is to collect data on cognitive assessment and brain magnetic resonance imaging so we will be able to look at structure and function, as well as contributions of hypertension and diabetes to brain health. Very little work has been done in this area, especially in African Americans. The participants we interacted with are very excited about it. We had an African American investigator from Columbia University come and talk about cognitive assessment and the importance of cognitive function, and I think she provided a very good context. While talking about how as we age and the factors that can contribute to cognitive health, she asked participants; ‘Is it important for you to remember names, remember what you want to do, family members?.’ When she presented it that way everybody said ‘Yes.’ So, having that enthusiasm will help us to conduct a challenging assessment. It’s about an hour; it’s going to require much patience on the part of the participants and welltrained examiners. Fortunately, we have the expertise and availability of a psychometrist in the Atherosclerosis Risk in Communities Study to train the examiners and to allow us to use the same instruments they are using, so that will enable us to do comparisons. Another area of research is genomics. We have been a very important player in the National Heart, Lung, and Blood Institute Transitions for Precision Medicine initiative. The JHS has been one of the leading cohorts along with Framingham and a few others. Collaborations on genomewide sequencing data involve the JHS as the only African American cohort. We are making a big impact on genomic research, and that’s going to continue. With this next exam, we’re going to be doing a study on returning actionable genomics results in collaboration with

Framingham. It will be novel, and it will help us come up with some approaches to doing this in a systematic way. Another topic is atrial fibrillation, so we know that atrial fibrillation tends to be lower in African Americans than in non-African Americans but it’s not clear if that’s due to lower detection among African Americans, it’s still a question mark. It’s an important question because atrial fibrillation is often asymptomatic and a risk factor for stroke, which is more prevalent in African Americans; its important to get a handle on the true incidence of atrial fibrillation. We have an ancillary study that will place a monitor on participants for a 2-week period to monitor the heart rhythm. We think this ancillary study will give us a better idea of the prevalence and the contributions of atrial fibrillation to stroke. Blood pressure, more than 60% of our participants have hypertension. We have an ancillary study that will allow us to determine how to better measure blood pressure. Masked hypertension is a phenomenon in which participants seem to have normal blood pressure in the clinic, but then out of the clinic, they may have an elevated blood pressure measurements. This ancillary study will not only do 24-hour blood pressure measurements but measure blood pressure with and without an observer in the clinic in a more controlled environment to give us an idea of what approaches could better measure blood pressure in a clinic setting. We also have a planned project that will look at resistant hypertension, and to what extent is it due to noncompliance? The study will measure metabolites of blood pressure medication. We will also have projects that will give us more insights into hypertension and comorbidities, as well as studies evaluating correlations between sleep disorders and hypertension. We have a working group that has developed a strategic plan to give us more insights on social determinants of health as contributors to cardiovascular health.”

information to participants and the community in a way that is not viewed as negative. We are seeking ways to translate findings into practice and disseminate the information through a wider array of channels.”

Research Gaps That Should Be Considered Dr. Correa shared, “In terms of research gaps, I see two areas we need to pay more attention to: chronic kidney disease which has a high prevalence in the community, and the importance of lifestyle to cardiovascular disease. We need to find a way of disseminating that

Dr. White’s comments on the benefits of the JHS for Jackson area physicians and primary care providers are focused on increasing the representation of African Americans in the workforce. “From the Undergraduate Training and Education Center standpoint, we are now producing physicians from the UTEC who are practicing in the area. That is definitely a benefit. They are sensitive to the needs of African Americans, they have been trained to

Dr. Adolfo Correa

Dr. Victor Sutton

Dr. Victor Sutton, principal investigator of the Community Engagement Center, made a similar comment, “I see a big opportunity for translating science and moving more into implementation. I say that because we are going to have to translate that information and see how it improves health outcomes in our community.” Dr. Sutton sees a need to address the science of community engagement and bridge the gap between academia and the community, as well as the gap in the literature on translating research into reality. In terms of social determinants of health, Dr. Sutton says, “There are lots of opportunities to look at employment, housing, and education and how they are integrated around health.” Dr. Marinelle Payton, principal investigator of the Graduate Training and Education Center at Jackson State University, sees intervention as the research gap that needs to be addressed over the next ten years. Dr. Wendy White, principal investigator of the Undergraduate Training and Education Center (UTEC) at Tougaloo College, says, “We are not producing enough researchers. I’d like to see more students engaged in public health.” Benefits of the Jackson Heart Study to the Jackson Area Physician/ Primary Care Provider Community During the Next Ten Years

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Armed with what we know from the first 20 years of research, we can serve as a rich resource for Jackson area physicians and primary care providers on cardiovascular disease. Additionally, over the next 10 years, the focus will be on six research areas: heart failure, brain health, genomics, atrial fibrillation, blood pressure and social determinants of health– plus, addressing research gaps in chronic kidney disease, lifestyle, health promotion, training and education.” —Adolfo Correa, MD, MPH be critical thinkers with a background in research and public health, and they understand the research part of it as well as the clinical part. They know how to interact with African Americans because some of them have been in the clinic.”

or obese, diabetic or prediabetic. Some of the interventions we’re implementing from the Community Engagement Center will link community residents with resources and evidence-based programs that we know work.”

Dr. Payton sees the benefit as prevention. “Prevention: one word– prevention, that’s what it’s all about.” Dr. Sutton’s comments focus on community and clinical linkages. “From the Community Engagement Center perspective, we want to share what we learn with the physician/primary care community. What does that mean at a practical level? That there have to be some clinical and community linkages. We’re trying to work upstream, trying to reach community members before they get overweight

Dr. Correa commented on five specific benefits: referrals, sharing of information, improved understanding, improved lifestyle, and better health in future generations. “We can provide information to physicians and primary care providers, including information that will help them appreciate the importance of personalized medicine and information on the importance of improved lifestyle for better health. We need to interact more through targeted meetings with primary care providers, find out what would be useful to them, participants, and the wider community.”

Dr. Wendy White

Dr. Marinelle Payton with Participants and Students at the Jackson Medical Mall

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In Summary Dr. Correa ends the commentary on the next 10 years of the Jackson Heart Study with a challenge and a path forward to link JHS findings with the clinical practice community. Armed with what we know from the first 20 years of research, we can serve as a rich resource for Jackson area physicians and primary care providers on cardiovascular disease. Additionally, over the next 10 years, the focus will be on six research areas: heart failure, brain health, genomics, atrial fibrillation, blood pressure, and social determinants of health–plus, addressing research gaps in chronic kidney disease, lifestyle, health promotion, training, and education. With implementation science, the JHS is in a pivotal position to continue making a significant difference in cardiovascular health for generations to come in Mississippi and beyond. n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268 201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN2682018 00014I), the Mississippi State Department of Health (HHSN2682018 00015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health

Author Information Professor, Department of Medicine, University of Mississippi Medical Center; Principal Investigator and Director, Jackson Heart Study, Jackson, Mississippi (Correa). Principal Investigator, Jackson Heart Study Graduate Training and Education Center, Jackson State University, Jackson, Mississippi (Payton). Principal Investigator, Jackson Heart Study Undergraduate Training and Education Center, Tougaloo College, Jackson, Mississippi (White). Director, Preventive Health and Health Equity, Mississippi State Department of Health; Principal Investigator, Jackson Heart Study Community Engagement Center, Jackson, Mississippi (Sutton). Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson).

Correa

Payton

White

Sutton

Henderson

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COMMENTARIES

Implementation Science and Implications for the Future of the Jackson Heart Study GEORGE A. MENSAH, MD; CHERYL NELSON, MSPH; FRANCES C. HENDERSON, EDD

agency has supported and helped advance fundamental discovery, but we also know that in going from the fundamental discovery to day-today benefit, a lot is lost in translation. So, the center was established to serve as a strategic focal point for the National Heart, Lung, and Blood Institute to advance implementation science; to advance health inequities research, and to advance global health research, all of which have real relevance for routine clinical and public health practice in this country and worldwide. I am very optimistic that, given what we are seeing these days, and the growing interest in implementation science, we have the unique opportunity to really reap maximum benefit from the science that we have supported.”

The following Commentary was derived from an interview of Dr. George A. Mensah, Director of the National Heart, Lung, and Blood Institute’s Center for Translation Research and Implementation Science by Ms. Cheryl Nelson and Dr. Frances C. Henderson. Dr. Mensah responded to three questions. Question One: What is the mission of the Center for Translation Research and Implementation Science, and what is your vision of the possibilities for translating science discovered using the Jackson Heart Study data into practice in clinical and public health settings? “I would say that the core mission is to support research on the rapid and sustained adoption of proven effective interventions into routine practice so, really the translation of discovery science into day-to-day benefits for the average person. One of the things that we are very proud of at the National Institutes of Health (NIH) is how much the

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“Now, where does the Jackson Heart Study come in? We are all thrilled that we have seen 20 years of success. Back in 1948, when the Framingham Heart Study was started, we did not know the magnitude of the benefits that we would derive from that population study. However, within the first 10 years, it became very clear that the study would have a great impact. But, I think over the years the National Heart, Lung, and Blood Institute and the whole nation have realized that you really need a diverse population to address the unique challenges that we face in the U.S. and that’s where initiatives and endeavors like the Jackson Heart Study become important. It really addresses a unique gap that we didn’t have in Framingham, that’s the experience, the outcomes, and the trajectories of African American people. I think that’s what the Jackson Heart Study really has done—scientific discovery from a rich population of African American men and women. And, hopefully, we develop the capacity to be able to turn those discoveries into real evidence, real routine day-to-day care, so that is why I am optimistic and I am very thrilled at the success we have had over 20 years.” Question Two: When looking at clinical trials vs pragmatic trials, how would you describe and support the best fit for the Jackson Heart Study?

Heart, Lung, and Blood Institute has supported into real opportunities for Mississippi and the rest of the country. In other words, the findings from the Jackson Heart Study should not only advance the science, but they should inform real-world practice.” Question Three: How would the Jackson Heart Study investigators develop the research capacity for implementation research?

Ms. Cunningham and Dr. David Reich

“Now looking at clinical trials vs pragmatic trials, if you ask me how I would describe and support the best fit for the Jackson Heart Study, I would say that it has to begin with the experience we have gained from other studies over the years. We have known about the importance of high blood pressure even within the first five years of the Framingham Heart Study. So for 60 to 70 years, we have known about how crucial it is to control blood pressure based on data from very rigorously controlled randomized clinical trials, and yet we know that a large majority of people, particularly people with low socio-economic status, people in rural areas, people far from the major medical centers, and the routinely underserved are not getting the benefits of this science. And so there’s no question that we need rigorous clinical trials, but we also need real-world trials, real pragmatic trials that generate real-world evidence that we hope can facilitate the translation of our science into practice. I think it is a unique opportunity for the Jackson Heart Study, but I am saying we need to learn from some of the challenges and turn the challenges of the earlier trials and cohort studies that the National

Tougaloo Undergraduate Training and Education Center Student with Participant

“One important aspect is the institutional capacity to do this work. The second is really the staff, the next generation, and the importance of training and attracting the right people with the right commitment and the dedication to the area, so that not only do you develop institutional capacity, but you ensure that the future is also going to benefit from well trained, well-supported investigators. So, having a commitment and a respect, to implementation research as much as we do to basic, clinical, and population science, I think that is a beginning. We will not reap the benefits that we expect until we devote as much attention to implementation research as we do to basic science, clinical science, and population science research. That’s first, the second is, we also need to engage the future generation and let them experience and realize that there is a career to be made and successes to be had in advancing the whole concept of implementation science of which implementation research is a piece.” “So, the training piece is crucial, and the institutional capacity development is also crucial. There are several mechanisms we have at the NIH to support both. And I think it would be worth mentioning them because they provide funding opportunities in addition to the Jackson Heart Study funding mechanism for investigators to help build the capacity and to help sustain the long-term workforce. In addition, I think that it will be important to realize that although the NIH is the nation’s research agency, there are other governmental and quasi-governmental organizations with which engagement can really help the development, support, and sustainability of the

Graduate Training and Education Center Scholars

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I actually believe the Jackson Heart Study has tremendous implications for countries beyond the United States. There are many low- and middleincome countries where the populations have some obvious similarities to the population of the Jackson Heart Study, where the learnings and the translations that are done could be of tremendous benefit. And it’s not only in sub-Saharan Africa but also in the Caribbean, many small island developing nations, and beyond. I am very, very optimistic that the work that has been done in the 20 years has not only borne fruit but has a tremendous opportunity to help us chart the future ahead.” —George A. Mensah, MD institutional capacity for this work. The first that comes to mind would be the Patient-Centered Outcomes Research Institute (PCORI). The PCORI,s approach to patient-centered research is something I think should come hand-in-hand with the cohort study work being done so that you can leverage the networks that the PCORI has developed, such as Patient-Centered Outcomes Research Net, and make it a bit easier to translate the research findings into day-to-day health.” “I think that this 20th Anniversary observance and celebration really should be used to highlight the fact that the Jackson Heart Study had several challenges that you have overcome. And, this is the time to leverage the findings from the study and to address the implementation-science methodologies that would help accelerate the translation of these findings into routine health for Jackson, Mississippi, and for the rest of the country. And, in fact, I actually believe the Jackson Heart Study has tremendous implications for countries beyond the United States. There are many low- and middle-income countries where the populations have some obvious similarities to the population of the Jackson Heart Study, where the learnings and the translations that are done could be of tremendous benefit. And, it’s not only in sub-Saharan Africa but also in the Caribbean, many small island developing nations, and beyond. I am very, very optimistic that the work that has been done in the 20 years has not only borne fruit, but has a tremendous opportunity to help us chart the future ahead.” n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN26820180

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0010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN26 8201800014I), the Mississippi State Department of Health (HHSN26 8201800015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The authors have no conflicts of interest to disclose. The authors want to thank the staff and the JHS participants. The views expressed in this manuscript are those of the authors and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services.

Author Information Director, Center for Translation Research and Implementation Science, National Heart, Lung, and Blood Institute, Bethesda, Maryland (Mensah). Jackson Heart Study Program Official, National Heart, Lung, and Blood Institute, Bethesda, Maryland (Nelson). Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson).

Mensah

Nelson

Henderson

COMMENTARIES

The Right Leaders in the Right Place at the Right Time to Plan the Jackson Heart Study: An Interview with Daniel W. Jones, MD FRANCES C. HENDERSON, EDD

at a critical time in the planning of the JHS. Additionally, I asked Dr. Jones to acknowledge the contributions of Dr. Claude Lenfant, Director of the National Institutes of Health (NIH), National Heart, Lung, and Blood Institute (NHLBI) to the idea of a JHS, as well as those of Dr. Sharon Wyatt, a dedicated researcher who wore many hats in the formative years of the JHS. In 1996, at the beginning of the planning phase of the JHS, Dr. Conerly asked Dr. Jones to serve as chairperson of the planning committee. What follows is a narrative of responses in the words of Dr. Jones.—FH] Dr. Claude Lenfant and Dr. Wallace Conerly

Director of Clinical and Population Science, University of Mississippi Medical Center, Jackson

[On March 9, 2020, I had the privilege of interviewing Dr. Daniel W. Jones about his involvement with the early stages of the Jackson Heart Study (JHS). While the questions have been omitted for brevity, the answers speak volumes. I asked Dr. Jones to expound on a statement he once shared with me about the right leaders in the right place at the right time, thus the title of this commentary. Those leaders were Dr. Wallace Conerly, who during that time was the Vice Chancellor of the University for Mississippi Medical Center; Dr. James Lyons, then President of Jackson State University (JSU) and Dr. Joe Lee, then President of Tougaloo College (TC). They were a dynamic trio

Dr. Jones recalled (Daniel Jones MD Interview March 9, 2020), the idea of doing this study was one that the NIH/NHLBI, in particular, had been discussing for a number of years. In fact, they had made some preliminary attempts to begin the study in other places. So, eventually, the idea occurred to Dr. Lenfant, and I am not sure who else other than him contributed to this idea, to take the Jackson site of Dr. Claude Lenfant the Atherosclerosis Risk in Communities (ARIC) Study and build on the work of the ARIC Study to do the singlesite study in cardiovascular disease in African Americans that needed to be done. Dr. Lenfant and Dr. Conerly had an unusual relationship. We are not a research-intensive academic medical center, and so there were two things that Dr. Lenfant wanted to accomplish in doing the Jackson Heart Study. One was to perform the science necessary to answer important questions around why cardiovascular disease was such a more important problem in the African American community than other race-ethnic groups in our country. Two, he was interested in building capacity in Jackson related to the study. To add to the

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idea to build the capacity here in this place was quite an unusual approach to such an important study that was going to be so expensive anyway. So the two of them, I think, were both important in the discussions that led to the decision to pull the trigger and give us an opportunity to do the study here. For a good number of years, there had been a legitimate science conversation at the NHLBI. However, serious conversation was not given to doing this kind of study Dr. James Lyons until the Congressional Black Caucus began to put pressure on the NIH leadership and indirectly the NHLBI leadership to do something to demonstrate effort at trying to understand the problem and to solve the problem. Dr. Wallace Conerly, Dr. James Lyons, and Dr. Joe Lee It was an unusual group of people for sure. I don’t think any one of them would have been picked to be the head of an institution to oversee a study like this, but all in their own ways, they were uniquely suited to do it. Number one, there was already a trust level among the three of them; number two, each of them saw for the community and then

for their own institution what a large opportunity this was. So, they were, I think, uniquely suited to agree to the large responsibility of taking this on and willing to entrust their faculty to do the work that needed to be done. So, I think they deserve credit. It would have been easy for them to say, ‘this is way beyond anything we can do; we can’t take on this risk.’ I particularly tip my hat to the leaders at JSU and Dr. Wallace Conerly TC; their faculty were appropriately suspicious that they were being set up for failure. I will say that the institutional leaders at both JSU and TC were keenly aware that they were taking a risk. Historically, even though there was a good trust level among those three leaders, there was not historically a trust between JSU and UMMC, and I would say a well-deserved mistrust there. So, I do have a deep appreciation for the risk that all of the leaders took, but particularly the leaders at JSU and TC. Dr. Sharon Wyatt Sharon was already an important part of my professional and personal life. Early in my time, one of my goals was to develop a multidisciplinary team to do research, clinical care, and education, so I went to the Deans

Dr. Bam Mehrotra (Tougaloo College); Dr. Cecil Burchfiel (NIH); Dr. Dan Jones (UMMC) Dr. Bettye Ward-Fletcher (JSU); Dr. Herman Taylor (JHS); Dr. Joe Lee (Tougaloo) Dr. Wallace Conerly (UMMC)

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Literally, hours before I had to package the proposal for FedEx to send it to the National Institutes of Health to get it there on time, she brought me her document, and there was no time to read it. So I glanced at it, and on the first page she has a poem. I am thinking to myself, I have seen the credentials of the review group, and there is not a poet among them. I don’t think there is a social scientist among them; I think they are all biological scientists and statisticians. I thought to myself, they are going to kill us over this, but I had no choice but to send it off as it was. I did not have time to change anything. So we get there, in front of the review group, face-to-face to defend ourselves, and the chairman of the group was a very stern man from North Carolina, a statistician sternly looks at me, and he says, ‘Dr. Jones, there is something I need to say before we go to an in-depth review of this proposal.’ And, I am thinking, so he is going to tell me about the poem, and he is going to tell me how inappropriate that was to put in a science document. He says, ‘Dr. Jones, I want you to know that the community engagement and recruitment plan is some of the best science I have ever read. I compliment you on this part of your proposal.’” —Daniel W. Jones, MD

of the School of Nursing and the School of Pharmacy and asked them to appoint a faculty member to work in my operation which was in the Hypertension Clinic. Sharon was the one chosen by the Dean of Nursing to come and work in the Hypertension Clinic, and she came in her role as a nurse practitioner. When we began thinking about planning the JHS, I was Dr. Sharon Wyatt already aware that Sharon had a PhD in sociology, but I had not taken advantage of that. When it came time to write the engagement part and the recruiting strategy for the JHS,

she was there in my research group. We had done research together, she was trusted, and so I turned to her to ask her if she would write that section of the proposal, which she did very, very successfully. Sharon was a remarkable person in so many ways. You know she was good at seeing opportunities for other people, she shared my view of inclusion and diversity, the approach to life and the approach to professional life, so that was a good moment for the JHS. One of Sharon’s strengths was that she was an outstanding writer. I mean, she wrote so well, and another one of her characteristics was that she was a procrastinator; she had a hard time meeting deadline. My deadline for all of the people participating in the writing was that they get me their documents two weeks before I had to send it off to NIH. I

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wanted a chance to review it and then to make a cohesive document. So having worked with Sharon, about a month before that deadline, I began reminding her and encouraging her, and she kept putting me off. So literally hours before I had to put it in FedEx to send it to the NIH to get it there on time, she brought me her document, and there was no time to read it. So I glanced at it, and on the first page, she has a poem. And, I’m thinking to myself… I have seen the credentials of the review group, and there is not a poet among them, I don’t think there is a social scientist among them, I think they are all biological scientists and statisticians… I thought to myself, they are going to kill us over this, but I had no choice but to send it off as it was; I didn’t have time to change anything. So we get there in front of the review group, face to face to defend ourselves. The chairman of the group, a very stern man from North Carolina, a statistician, sternly looks at me, and he says, ‘Dr. Jones, there is something I need to say before we go to an indepth review of this proposal.’ I am thinking he is going to tell me about the poem, and he is going to tell me how inappropriate that was to put in a science document, and so he says, ‘Dr. Jones, I want you to know that the community engagement and recruitment plan is some of the best science I have ever read. I compliment you on this part of your proposal.” Sharon provided many anxious moments for me in my life. Anyway, what a wonderful friend she was to me, and we had an unusual group. God was good to me to put together these really good people who were smart to work with me. I mean, what were the chances when I needed to write something like the JHS proposal that I would have a University of Virginia educated sociologist in my research group.

biased sources, So, as an adult, I had to learn the real history of what happened. I came with more understanding of racial issues than most white Mississippians my age, but I was astonished to find how deep the bitterness still was among African American professionals over the injustices that had occurred over the years. My mistaken assumption was that African American professionals, who had made it to the position in a university, who had achieved a PhD, had overcome all the obstacles, and that now all of the injustice was behind them, it was history. I was so wrong about that. It was such an eye-opener to spend time, intimate time, early on, with the investigators, and as the trust level improved and we were able to have very candid conversations, I learned that I didn’t know nearly enough about racial injustice and health care–- quite revealing to me personally. n Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN2682018 00014I), and the Mississippi State Department of Health (HHSN2682018 00015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The author has no conflicts of interest to disclose. The author wants to thank the staff and the JHS participants. The views expressed in this manuscript are those of the author and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services.

Racial-Based Health Disparities Author Information So, I came to the leadership position in the study with already a very strong interest in racial-based health disparities that came out of my practice in Mississippi, my own eyes seeing the historical, social injustice across race in our country and particularly in our state and the devastating result on health outcomes for African Americans in our state. For seven years, I lived in Korea as a minority individual, and I read about the Civil Rights Era. I was so curious about the time, and, unfortunately, a lot of the interpretation of the time came through very

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Former Deputy Director, Jackson Heart Study, Jackson, Mississippi (Henderson).

Henderson

COMMENTARIES

The Jackson Heart Study and the Birth of Precision Medicine HERMAN A. TAYLOR, MD, MPH

A straight line can be drawn from Secretary Heckler’s declaration in 1984 to the launch of the JHS in 2000. The lost time and lost lives justified a vigorous and comprehensive response from the National Institutes of Health (NIH). The JHS embodied that response. It involved one of America’s hardest-hit populations, engaged the best collaborators worldwide, recruited well and widely to add to the best Mississippi talent, and embraced cutting-edge approaches in community engagement, training, and research science. The result is a study which, though long-awaited, holds promise for accelerating the new era of precision medicine. It is historically late in occurrence, but ahead of its time n the details of its execution. It was an incredibly bold stroke on the part of the NIH which will bear fruit for years to come.

he Jackson Heart Study (JHS) is the largest single-site, focused, comprehensive study of an all-African American cohort ever undertaken. It was launched a little over 50 years after the start of the Framingham Heart Study (FHS), the nearly all white longitudinal study of similar design and purpose. Both studies were aimed at understanding risk and devising preventive and therapeutic targets to reduce the impact of heart disease. Framingham Heart Study’s identification of the risk factors for heart disease fundamentally impacted the national and global prevention, therapeutic, and research efforts of the latter half of the 20th century and the first decades of the 21st. However, the 50-year lag between the start of the FHS and the beginning of the JHS was an era of missed opportunity for comprehensively assessing the determinants of high risk among African Americans, leaving disparities in heart health underdocumented, understudied, and unchecked. The JHS grew out of mounting concern over tens of thousands of excess deaths annually among African Americans. In the words of Health and Human Services Secretary Dr. Margaret Heckler, these disparities were “an affront to the ongoing genius of American medicine.”1

However, the challenges were daunting in its early years. We had to build a Framingham-style study among African Americans in the Deep South. The study structure and governance called for an incredibly novel twist of involving three very different local institutions in the enterprise, two nonmedical-school Historically black colleges or universities (Tougaloo College and Jackson State University), and Mississippi’s only academic medical center (the University of Mississippi Medical Center). This marriage of these institutions of higher learning promised to be its own longitudinal experiment, with its own “risk factors” and outcomes. Additionally, the JHS was charged with the lofty goal of expanding the diversity of the public health and medical workforce in Mississippi by leveraging the study’s research scientists and data in educating and mentoring African American students on issues relevant to the resolution of health disparities. A final critical distinction was that this study was to be guided by the wisdom and priorities of the communities affected by health inequities (i.e., the African American community of Jackson, Mississippi). The JHS has never been merely a study; its multilayered complexity is the seat of its “precision.” While the phrase “precision medicine” had yet to be popularized 20 years ago, the launch of the JHS was a prescient step toward it. Precision medicine is seen as “an emerging approach for disease treatment and prevention that takes into account individual variability

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in genes, environment, and lifestyle for each person.”2 Currently, despite aspirations to the contrary, the dominant approach in medicine is still “one size fits all” until proven otherwise. Refinement in this approach in recent decades uses race as a proxy for likely disease and or outcome. For instance, some clinicians might say that an African American man with heart failure at age 60 likely has uncontrolled blood pressure as a cause, while a white man with the same condition more likely has ischemic heart disease due to stress and a lifestyle of eating rich foods. While this shorthand might work on the population level, it is fallacious and can be dead wrong for an individual patient; and the assumption is, at the very least, “imprecise.” The tendency for centuries has been to lump people into groups and treat the average, hoping for (and often accomplishing) the best. For Whites, this problem is a significant one. Detailed studies in whites have made it clear that they are a heterogeneous population with a wide range of possible outcomes and risks. Most researchers and clinicians would find it absurd to think otherwise. Unfortunately, a large fraction of those same clinicians and researchers have, perhaps unconsciously, viewed the health of African Americans with less granular understanding. Many studies, even today, lump African Americans into a single variable, implying by doing so that being African American is a monolithic condition that increases risk. This is imprecise science, which, ultimately, makes for imprecise medicine. The historical dearth of studies focused on African Americans has been problematic since, with scant objective research evidence, the likelihood that treatments are ineffective or dangerous (i.e., “imprecise”) enlarges and increases risk. The JHS, by intentionally and comprehensively focusing on African Americans’ environmental exposures, behaviors, and genetics, leads American research forward in a fundamental way. Rather than following a design that revisits the classic white

reference group and perpetuating the monolithic view of African American risk, every JHS analysis is, in part, a study of African American heterogeneity. They each look beyond the label “African American” by being all African American and offer the opportunity to study heart health at a new level of complexity and nuance. Against a history of scientific neglect and superficial consideration of the many facets of what the label “African American “actually means, the JHS is a great leap forward for precision. One size does not fit all. If the JHS was only a study of African American heterogeneity, that feature would represent significant scientific progress. A better understanding of one of the most genetically varied populations in the world—which the existence of the JHS enables—is enough for the Study to be recognized as a major contributor to the birth and growth of precision medicine. In closing, however, I would invite you to consider two final important features of this massive project: Community First—In the past, little attention had been given in large-scale, community-based longitudinal cohort studies to approaches that were beyond observational. Educating the population under study was not a high priority. In some instances, it may have been avoided for fear of altering or delaying outcomes of interest. This is not at all to imply malicious intent; in fact, the concern of methodologists was that some important observation might be obscured beyond statistical validity by interventions beyond community norms. Also, it’s important to note that whenever an actual case of cardiovascular disease was discovered in all such studies, participants were referred to medical care. The JHS took a very different approach. Our philosophy was that we were bound to ensure that the level of health literacy in our community population was the highest possible, and we put

Dr. Herman Taylor with JHS Scholars at Morehouse School of Medicine Summer 2016

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Though it is still evolving, I am immensely proud of the work of the large, diverse team, supportive funders and institutions and a cooperative, trusting community. The Jackson Heart Study’s significance will continue to grow as time passes, and that significance is most of all a tribute to the African American community of the Greater Jackson Mississippi region. Their commitment, altruism and support make the Study what it is and all that it promises to become.” —Herman A. Taylor, MD, MPH significant effort and resources into that goal. Preventive behaviors taught by staff and trained community health advisors were a high priority of the JHS from its inception. The benefits of trust-building and potential risk factor reduction have been of incalculable value. This growth of mutual respect and trust between the scientist and the public not only increases opportunities to improve health, but it creates a fund of goodwill that will make future community-based research more acceptable and create even wider opportunities for science to be of service to society. Transgenerational Intervention to Create a True Jackson Heart Study Legacy. The training of future leaders in disciplines of public health (including research design, epidemiology, statistics, and ethics) from high school to undergraduate- and graduate-level programs are complementary to the JHS operational aims. The active, successful mentoring of young investigators are goals in their own right and are also complementary to the JHS aims. These transgenerational interventions are responsive to a great need to build capacity for research in the region and among the people most severely affected by cardiovascular diseases. While there were significant challenges along the way, the enduring reality of the JHS is one of success against daunting odds, and the emergence of young clinicians and scientists of color as well as of a health activist community united behind a theme of providing “A Legacy of Health” for generations to come. Though it is still evolving, I am immensely proud of the work of the large, diverse team, supportive funders and institutions, and a cooperative, trusting community. The JHS’s significance will continue to grow as time passes, and that significance is most of all a tribute to the African American community of the Greater Jackson Mississippi region. Their commitment, altruism, and support make the study what it is and all that it promises to become. n

Acknowledgments The Jackson Heart Study (JHS) is supported and conducted in collaboration with the University of Mississippi Medical Center (HHSN268201800010I, HHSN268201800011I and HHSN268201800012I), Jackson State University (HHSN268201800013I), Tougaloo College (HHSN2682018 00014I), and the Mississippi State Department of Health (HHSN2682018 00015I) contracts from the National Heart, Lung, and Blood Institute (NHLBI) and the National Institute on Minority Health and Health Disparities (NIMHD). The author has no conflicts of interest to disclose. The author wants to thank the staff and the JHS participants. The views expressed in this manuscript are those of the author and do not necessarily represent the views of the National Heart, Lung, and Blood Institute; the National Institutes of Health; or the U.S. Department of Health and Human Services. References 1. Report of the Secretary’s Task Force on Black and Minority Health. Volume IV, Cardiovascular and cerebrovascular disease, part I and part II. Department of Health and Human Services; 1986. 2. Genetics Home Reference. National Library of Medicine. What is Precision Medicine? 2020. Accessed March 20, 2020. https://ghr.nlm.nih.gov/primer/precisionmedicine/definition

Author Information Professor of Medicine, Director, Cardiovascular Research Institute, Department of Medicine, Morehouse School of Medicine, Atlanta, Georgia (Taylor).

Taylor

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IMAGES IN MISSISSIPPI MEDICINE

Mississippi’s Framingham: Twenty Years of the Jackson Heart Study (JHS), its Roots, and its Impact on Mississippi and the World—Although JHS is celebrating 20 years of essential medical research, the origins of the study can be traced to the earliest days of the University of Mississippi Medical Center (UMMC). The legendary UMMC Professor of Medicine Dr. Herbert Langford, one of the institution’s founding professors as chief of endocrinology, was one of the first researchers in the United States to assert that race played a role in hypertension and cardiovascular risk. Back in 1965, he and Dr. Robert Watson recorded the blood pressures of every Hinds County high school student and noticed that the black students had higher blood pressures. Langford’s pioneer work in hypertension, as well as longstanding National Institutes of Health (NIH)-funded hypertension research by renowned physiologist Dr. Arthur Guyton, would weave the early foundation of UMMC’s research on hypertension and cardiovascular disease, including the landmark JHS, which is the largest community-based study of cardiovascular disease among African Americans. Efforts by the National Heart, Lung, and Blood Institute (NHLBI) to create a more racially diverse study cohort than that being utilized by the Framingham Heart Study (FHS) resulted in the Atherosclerosis Risk in Communities (ARIC) Study, which was initiated in 1987, which followed FHS’s basic premise among more diverse populations. One of the four ARIC sites was established in Jackson (the other three sites were: Minneapolis, MN; Forsyth County, NC; and Washington County, MD). Each of these prospective studies of atherosclerosis recruited a randomly selected cohort of approximately 4000 persons aged 45 to 64 years, with the subjects participating in four triennial examinations and annual telephone interviews. The vision for ARIC’s Jackson Field Center began in 1985 with Dr. Richard Glenn Hutchinson (1933−2020) and Dr. Robert Lee Watson (died 2009). Dr. Hutchinson, as principal investigator, and Dr. Watson, as co-principal investigator, formulated the competitive research proposal that placed one of the ARIC Field Centers in Jackson at UMMC. After serving as Chief of Cardiology at Keesler Air Force Hospital in Biloxi, Hutchinson came to UMMC in 1967 where he served as the Director of the Preventive Cardiology Program, Professor of Medicine, and principal investigator of numerous research studies on cardiovascular disease prevention. His work as the principal investigator for the ARIC study proved essential for the study’s success and its later expansion as the JHS. Dr. Watson, a brilliant and industrious epidemiologist, also proved essential. Daniel W. Jones, MD, followed Dr. Hutchinson as principal investigator for the site, leading the study from 1997 to 2000. Dr. Jones is a former

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chancellor of the University of Mississippi, former UMMC vice-chancellor, current Director of Clinical and Population Science at UMMC, and a former student of Dr. Langford. He was appointed by Dr. Wallace (Wally) Conerly to serve as the chairperson of the Planning Committee, and he was also appointed by the NHLBI as Principal Investigator of the Feasibility Phase for JHS. Dr. Jones also served as a UMMC Cardiologist and Director of the Hypertension Clinic. Dr. Jones’s leadership in creating the JHS was absolutely critical, as he laid the groundwork for the expansion of ARIC and the creation of JHS. Dr. Jones would be followed at ARIC by Dr. Andrew Brown, a medicine professor at UMMC, who led the study from 2000 to 2003. After Brown, Dr. Thomas H. Mosley, Jr., assumed leadership of the Jackson ARIC Field Center in 2003, and he continues in that role. Dr. Mosley’s work at the Jackson ARIC began in 1993 under Dr. Hutchinson’s mentorship. Dr. Mosley is the Associate Director of the Division of Geriatric Medicine at UMMC. The ARIC project has published over 1200 articles in peer-reviewed journals since its inception. The success of the ARIC Jackson site, which recruited 3722 African Americans, as well as the extraordinary value of collected data, proved to be determining factors for the NHLBI to create the JHS in 1999, and to expand the work of the Jackson ARIC. A populationbased longitudinal study, JHS would become the largest single-site, prospective, epidemiologic investigation of cardiovascular disease ever initiated among African Americans. The studies share participants, known as the JHS/ARIC Cohort. The JHS would be created under new leadership and funded by the NHLBI and the National Institute on Minority Health and Health Disparities at the NIH. As well, the partnership included three local institutions: Jackson State University, Tougaloo College, and UMMC. The unique study is renowned for its important scientific findings of the risk factors for cardiovascular disease in African Americans. It has served as a springboard for

community health outreach and other important scientific studies in the African American community. Additionally, the study has provided training opportunities to dozens of underrepresented college students interested in careers in science, medicine, and public health; many of whom have gone on to research careers at prestigious institutions. The new leadership which marked the creation of JHS was the exemplary researcher Herman Alfred Taylor, Jr., MD, MPH. Dr. Taylor held the position of JHS’s first principal investigator and director and would lead the JHS for a decade and a half (1998−2013). Taylor in many ways became the “face” of the JHS as its prominence bloomed nationally. These two featured images focus on this first leader of the JHS, Dr. Taylor, whose critical leadership resulted in the extraordinary success of the program. Pictured, Dr. Taylor is shown outside the office of the Jackson Heart Study and the continuation of the Atherosclerosis Risk in Communities (ARIC) Study. The ARIC Study, it should be noted, was continued near the time the JHS was started. The JHS recruited 5306 participants who are African American men and women between the ages of 35 and 84. The data collected includes both conventional risk factors and emerging factors. Some of the other areas of focus include early indicators of disease, genetics, sociocultural influences, such as socioeconomic status and discrimination, and physiological relations between common disorders such as high blood pressure, obesity, and diabetes and their influence on cardiovascular disease. Dr. James E. Keeton, then UMMC vice-chancellor for health affairs and dean of the school of medicine when JHS was created, credits Dr. Taylor for providing dynamic and steadfast leadership from the outset of the study. “Under Dr. Taylor’s guidance, the project grew from a newly christened startup to a well-regarded and groundbreaking study with an international network of collaborators,” Dr. Keeton said. Dr. Taylor, the Shirley Professor for Health Disparities in the Division of Cardiology, was recruited in 1998 to direct the study. Keeton also commended the entire study team for their extraordinary efforts in building a superior program that is making significant contributions to the health and well-being of African Americans and the body of scientific knowledge on many cardiovascular-related diseases. Dr. Keeton

noted that even as the initial thrust of the study matured, Dr. Taylor and his colleagues identified creative ways to diversify the project, expanding the number of study centers from three to five and engaging researchers from across the country. “This is an impressive body of work and a national resource of which all Americans, and especially the participants in Jackson, can be justifiably proud,” Dr. Keeton said. Currently, Dr. Taylor is an Endowed Professor and Director of the Cardiovascular Research Institute at the Morehouse School of Medicine, and a nationally recognized cardiologist with broad experience in invasive practice/ research. His extensive experience in epidemiological observation has led him to a deeper appreciation of the urgency of community-level intervention as a priority, as well as a keen interest in broadening the diversity of disciplines and scientists focused on the problem of health disparities nationally and globally. A graduate of Princeton University, Taylor earned his medical degree from Harvard Medical School, trained in internal medicine at the University of North Carolina at Chapel Hill, and completed a cardiology fellowship at the University of Alabama at Birmingham. In 2013, Adolfo Correa, MD, MPH, a physician-scientist Taylor recruited in 2011 as chief science officer of the JHS, succeeded Taylor as director and principal investigator. Dr. Correa holds both an MD and PhD and is a dually appointed professor of medicine and pediatrics at UMMC. “Given Dr. Correa’s track record of clinical care, research and leadership, I hold complete confidence in his abilities to keep the study moving forward,” Dr. Keeton said. In November 2019, the NHLBI announced Correa has decided to retire and step down from his leadership of the study in December 2020. The announcement noted, “Under his leadership, the study has increased scientific productivity, as attested by numerous publications of research findings in internationally regarded journals.” After a collaborative, cohesive exploration process, the search committee plans to announce its choice of a new director soon. [Dr. Lampton acknowledges with gratitude the assistance of Karen Evers in the writing of this essay. If you have an old or even somewhat recent photograph which would be of interest to Mississippi physicians, please send it to me at lukelampton@cableone.net or by snail mail to the Journal. —Ed] — Lucius M. “Luke” Lampton, MD; JMSMA Editor

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POETRY AND MEDICINE

EDITED BY LUCIUS M. LAMPTON, MD; JMSMA EDITOR

[This month, in this special issue celebrating the Jackson Heart Study, I bring you a poem by Mississippi-born poet, essayist, and cardiologist John Henry Stone, MD. Its subject is appropriately the heart, which was a favorite subject of many of his brilliant poems. It comes from his second book of poetry “In All This Rain” (1980). Stone’s father died of a heart attack in Jackson at the age of forty-five while Stone was in high school, an event that influenced his specialty choice and inspired his writing (see his poem “Spiritual”). This Jackson native graduated from Millsaps, earned his MD from Washington University, and completed residencies in internal medicine and cardiology at the University of Rochester. After completing a cardiology fellowship at Emory, he remained there, spending almost forty years teaching students as medical faculty. Stone’s career was first focused at Grady Hospital where he founded the department of emergency medicine. He later served as Emory’s associate dean for admissions, teaching one of the nation’s first medical school courses centered on literature and medicine. Atlanta writer Sylvia Wrobel remembered him as “Emory’s doctor-poet—a man who practiced life and medicine as he celebrated both in his poems: with joy, careful listening , and wonder…As a cardiologist, mentor to medical students and residents, and as an internationally recognized poet and essayist, the heart was his special territory. He wore his self-described ‘double harness of medicine and literature’ easily, always ready to capture an image, the revealing power of simple moments, on the note cards he carried in his pocket.” Any physician is invited to submit poems for publication in the Journal either by email at lukelampton@cableone.net or regular mail to the Journal, attention: Dr. Lampton.]—Ed.

Heart The heart depends— and learns too well diastole like any bell. And systole is what it sends. And for its part that’s what it does: it leaves the beat the way it was so that its end becomes its start. It dangles there in perfect tone repeats its prayer for all its kin behind the bone. The heart thereby survives all sin except its own. —John Stone, MD (1936-2008)

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Journal of the Mississippi State Medical Association | Volume LXI |No. 9 | September 2020