29 minute read
INTERVIEW
Streamlining Research Access
Per Ostmo, MPA, Rural Health Research Gateway
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Please tell us about the mission of the Rural Health Research Gateway.
The Rural Health Research Gateway (Gateway) is a research dissemination program funded by the Health Resources and Services Administration’s Federal Office of Rural Health Policy (FORHP). The primary purpose of Gateway is to share the work of the FORHPfunded Rural Health Research Centers (RHRCs). There are several of these research centers housed within different universities across the United States, each with their own research teams, areas of expertise and websites. Gateway streamlines the process of accessing research by making all research across all RHRCs available in one place. The Gateway website is a free, searchable online repository for FORHP-funded rural health research. Users can browse research by topic, date, research center and author. Gateway also disseminates research through webinars, exhibiting and presenting at rural health conferences, posting key findings on social media and notifying subscribers when new research is published.
As the program director what does your work entail?
My primary focus is maintaining the Gateway website, ensuring that new research is archived and made easily accessible in a timely manner. When a new publication is added to Gateway, an email notification is sent to our subscribers that includes a brief description of the research, key findings and a direct link to view the full publication. Keeping the Gateway library up-to-date with new research from nine RHRCs and additional policy analysis initiatives requires careful coordination with the research teams.
As a research dissemination program, it is important that research findings are presented in ways that are easily understood by a broad audience. Gateway isn’t just for researchers. Our users include policymakers, educators, public health employees, hospital staff, students and more. Rural Health Research Recaps have been developed by Gateway as a point-of-entry to the research world. These one-pagers identify key findings from all the RHRCs on specific rural health topics. For example, in the past five years the RHRCs have produced 42 research publications on mental and behavioral health. That’s both impressive and daunting for readers. Our new recap, Rural Mental Health “Rural Mental Health,” is a succinct and easy-to-understand starting point.
Dissemination is also about stakeholder engagement. We want our stakeholders to be wellinformed on critical rural health issues, but we also need to know which issues our stakeholders care about most.
How do you engage with rural health stakeholders?
Gateway webinars are an opportunity for attendees to engage with researchers directly during the Q&A portion, and these discussions often highlight additional research needs. Last year, the Southwest RHRC presented on the Rural Healthy People Initiative, looking back at key findings from Rural Healthy People 2010 and 2020. At that time, the Rural Healthy People 2030 survey was ongoing, and our audience could choose to complete the survey.
Gateway also exhibits at various rural health conferences to share new research with attendees. The National Rural Health Association’s Annual Meeting is an excellent place to get engaged. At the 2022 Annual Meeting, researchers from the Maine RHRC were presenting early findings from a research project on ambulance deserts. The research lead was discussing how their team currently had data on 44 of the 50 U.S. states, with hopes of acquiring data for the remaining states within the next year. That’s when an audience member spoke up and said, “I can help you get that data.”
We also field questions via phone or email. I frequently hear from students looking for resources, journalists seeking key findings for stories they are working on and from aspiring researchers hoping to begin a career in rural health. If our team can’t answer a question directly, we’ll point you in the right direction.
Please tell us about some of the research projects you and your members are working on now.
Each year, FORHP assigns new research projects to the RHRCs. Between the larger research centers and the smaller policy analysis initiatives, we see approximately 40 new research projects per year. All ongoing and completed research projects and their related publications can be viewed on Gateway. The size and scope of projects vary. Some result in single page data briefs while others result in 40-page chartbooks, publications in peer-reviewed journals, case studies, policy briefs or any combination of these final products.
The University of Minnesota RHRC is currently investigating differences in health and health care access for LGBTQ+ adults. One key finding is that rural LGB adults reported the
highest rates of depression and anxiety disorder diagnoses, as well as the highest levels of depressed feelings, compared with urban LGB and rural and urban heterosexual adults. Rural LGB adults also reported the lowest levels of having their social and emotional needs met.
The Washington, Wyoming, Alaska, Montana and Idaho (WWAMI) RHRC specializes in the health care workforce. WWAMI’s current project examining trends in behavioral health workforce supply in the rural U.S. has found that while the per capita supply of psychiatrists declined over the past decade, the supply of psychologists, psychiatric nurse practitioners, social workers and counselors increased in both rural and urban counties.
What are ways physicians and clinics can utilize your research?
There is a tremendous amount of freely accessible research on Gateway, but not every publication will be relevant to every user. If someone wants to stay up to date on a wide variety of rural health topics, then they should subscribe to Gateway’s research alerts. These emails highlight key findings when new research is published and only take a minute to read.
Other users might prefer a narrower focus. In that case, browsing Gateway by topic is best. DEA waivered physicians may want to browse “opioids.” A study by WWAMI RHRC found that over half of physicians with a 30-patient waiver were not treating any patients with buprenorphine. Psychiatrists might browse “mental and behavioral health.” Research conducted by the Rural and Underserved Health Research Center found that, in 2019, 32.4% of non-metropolitan and 35.7% of metropolitan adults with serious mental illness received no mental health treatment in the prior year. Administrators may be more interested in the topics of “health care financing” and “workforce.” Another study by WWAMI RHRC found that between 2010 and 2016, the nurse practitioner workforce in the U.S. grew at an annual rate of 9.4%, while the overall physician workforce grew at 1.1%.
Gateway makes it easy to find research relevant to any rural health stakeholder. We hope that our users share research with others, cite it for their own research projects, implement findings into practice and get engaged with the rural health research enterprise.
What are ways physicians in out-state areas could contribute to your projects?
I have two recommendations. First, physicians who are interested in getting involved in rural health research should reach out to Gateway. If someone has a particular research topic of interest, then I can help connect them with an RHRC that specializes in that topic. Second, if physicians want to become more “tuned-in” to the general field of rural health, I recommend checking out the Rural Health Information Hub (RHIhub)–another FORHP-funded program. While Gateway is specifically focused on research, RHIhub covers rural health more broadly. Users can find funding opportunities, news stories, a calendar of rural-oriented events and a huge library of resources. Like Gateway, RHIhub is 100% free to use.
What are the biggest challenges facing rural health care delivery today?
Access to health care services is a perennial issue facing rural health. According to the North Carolina RHRC, 183 rural hospitals have closed
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3Streamlining Research Access from page 9
since 2005, 140 of which have closed since 2010. Of these 183 closures, 99 have been complete closures, where facilities no longer provide any health care services. 84 have been converted closures, meaning facilities no longer provide in-patient care, but continue to provide some health care services, such as primary care or skilled nursing care.
When a rural hospital closes, the travel burden to receive care increases for that geographic area. The Southwest RHRC examined travel burdens to receive care and found that in 2017, rural residents traveled, on average, more than twice the distance for medical/dental care than urban residents, (urban 8.1 miles one-way; rural 17.8 miles one-way). Rural residents also spent more time in travel (urban, 25.5 minutes one-way; rural, 34.2 minutes one-way).
Telehealth services can help alleviate some of the challenges related to health care access. However, telehealth comes with its own set of challenges. Large swaths of rural America lack broadband internet service. South Carolina’s RHRC found, in 2016, only 61.4% of rural and 78.0% of urban American Indian/Alaska Native households reported having broadband internet service. By comparison, 82.5% of rural and 89.1% of urban non-Hispanic White households reported having broadband.
What are some solutions to these challenges?
The North Carolina RHRC explored alternatives to complete closures by conducting a national survey of critical access hospital executives. Conversion to a Rural Health Clinic, Urgent Care Center or a Federally Qualified Health Center were considered the most viable alternatives to complete closure of a critical access hospital, while long-term care facilities were rated as the least viable alternative. The North Carolina RHRC is also studying Rural Emergency Hospitals, which were established by the Consolidated Appropriations Act of 2021, but it is too early to tell how many rural hospitals might convert to this new designation. Of course, all the various hospital designations have workforce requirements, and it can be difficult to attract new health care professionals to rural areas. We can look to the University of North Dakota and the University of Minnesota Duluth as exemplars in rural training tracks for physicians and other health care professionals.
Expansion of broadband infrastructure is one possible path toward increased access to health care services, but the existence of infrastructure alone does not guarantee household access. South Carolina RHRC found that income and education level of the household are major predictors of broadband access. When considering telehealth implementation, health care facilities should be cognizant of populations that cannot afford or do not know how to operate a smart device needed for telehealth services.
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Since Gateway started in 2007, you have completed over 600 research projects. What were some of the most dramatic findings?
The Rural Health Research Gateway was launched in 2007, but our oldest archived research publication was published in 1996. The RHRC program is even older, having been initiated in 1988. As that program grew, it became more important to have one centralized place to access all the research across all RHRCs. Thus, Gateway was born.
I don’t think I could pinpoint the most dramatic findings coming out of the RHRCs, but there are three general themes that I would like to mention. First, as rural health stakeholders, we should be cognizant of dual disparities in health. Location (living rural vs urban) is only one dimension of analysis. The RHRCs also examine health disparities by race/ethnicity and other social determinants of health. Rural for one population may not look the same as rural for a different population. Second, health care solutions for urban areas do not necessarily work in rural areas. The U.S. is vast and diverse. Accordingly, there are different environmental and cultural factors that influence health status and need. Third, the phrase “older, sicker, poorer” is often used to describe rural populations. This is unfortunate, because rural populations are also resilient, diverse, generous and community oriented. A more well-rounded view of rural that includes these positive aspects is needed to attract investment in infrastructure and workforce.
With so many publications freely accessible through Gateway, do you have a favorite that you’d like to recommend?
I am particularly enamored with a few publications. First, the University of Minnesota RHRC published a chartbook, in 2020, titled “Rural-Urban Differences among Older Adults.” It examines demographics, socioeconomic characteristics, health care access and use, and health characteristics across rural and urban older adults. Key findings are represented across 44 easily understood charts. When it comes to disseminating research, a simple chart or figure is hard to beat. This chartbook from Minnesota is a masterclass in representing data graphically without being complicated.
Another favorite of mine is a 2019 project from South Carolina’s Rural and Minority Health Research Center, titled “Social Determinants of Health Among Minority Populations in Rural America.” The project is comprised of four policy briefs examining American Indian/Alaska Native, Asian American/Pacific Islander, African American, and Hispanic populations. This is the research that I would share if someone asked me, “What exactly are social determinants of health?”
Per Ostmo, MPA, is the Program Director of the Rural Health Research Gateway (Gateway) is housed at the Center for Rural Health at the University of North Dakota School of Medicine & Health Sciences. Gateway is funded by the Federal Office of Rural Health Policy (FORHP) to disseminate research conducted by the FORHPfunded Rural Health Research Centers. He earned his Master of Public Administration degree from the University of North Dakota.
3Connecting Primary and Specialty Care from cover
manifested is seen in the process of connecting primary and specialty care. While there is no question that this kind of collaboration can create more effective care and ultimately improve the practice of medicine, the pathways to this communication have become more difficult than ever.
Specialty care is sought by primary care providers in situations where assistance is needed to make a diagnosis or develop a treatment plan. It may also be utilized to confirm the diagnosis and ensure the developed plan is optimal for their patient. Most often, the primary care provider will refer a patient to a specialty provider for an evaluation, though sometimes a primary care provider may not be sure a specialty care provider needs to be seen. While it is always better to err on the side of caution, improved methods of communication can not only provide support in decision-making, they can help avoid unnecessary visits to a specialist. Confirmation by a specialist that the plan developed by the primary care doctor builds the level of trust in the physician patient relationship. Sometimes an appointment with a specialist is not possible on a timely basis. Researchers estimate that up to 40% of specialist referrals might be avoidable. Improving communication between primary and specialty care can address these issues, as well as improving both patient relationships and the primary care knowledge base.
Given the challenges of improving communication and the benefits of the resulting improved outcomes there are an emerging number of new tools and approaches that can be utilized to address these issues. One promising example is the electronic consultation or eConsult. Pioneered in 2005 at San Francisco General Hospital and through the San Francisco Health Network, the idea seemed to produce more efficient and effective care. eConsults are asynchronous exchanges initiated by a primary care provider (PCP) between that provider and a specialist colleague. They differ from synchronous communication such as in-person, video or phone consults. An eConsult can be initiated through a secure HIPPA compliant message that can share lab reports, images and other medical record data. Within three days a response can be received that will provide recommendations.
This model proved so successful that it spread to academic medical centers and to commercial and Medicaid payers.
The Association of American Medical Colleges (AAMC) became one of many organizations to adopt the eConsult concept and quickly became a leading force in addressing the many challenges that eConsults face. By 2014 the AAAMC had launched Project CORE (Coordinating Optimal Referral Experience) to build on the promise of the eConsult and in five years had helped improve patient care for more than 2 million patients. It was during this period that the University of Minnesota Medical School became a participant in and contributor to the project.
Initially, institutions participating in eConsult development saw an 84% increase in timely access to specialty care, avoiding nearly 7,500 unneeded referrals. As the process of fine-tuning the new model evolves, several important benefits are emerging. Patients experience shorter wait times to get a specialist appointment and communication is streamlined. This results in the specialist encounter yielding a higher-value in person visit and leads to better documentation and communication between providers. Though the majority of eConsult visits do not require an in-person specialty visit, when one is necessary the process helps triage patients, improving safety and outcomes.
Another benefit is that, within a specialty practice, the level of subspecialization is increasing. There is often great variation in the knowledge base and expertise between practice members. The eConsult speeds the process of getting an opinion from the doctor most qualified to respond.
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These exchanges use structured templates within the electronic medical record to create a seamless, point-of-care pathway that facilitates highquality coordination and communication between providers. For appropriate questions, which are typically about straightforward and low-acuity issues, eConsults allow for significantly more efficient specialist input and more costeffective care delivery. At any time, a specialist can convert an eConsult to a referral, and patients have the option to request an in-person visit rather than an eConsult. Perhaps the most difficult issue eConsults faces revolves around embedding the option into the electronic medical record (EMR), especially considering the large number of EMR providers and existing compatibility problems. This may entail some customization and IT resources, however the end result is well worth the investment. It’s important to note eConsults are not a way to expedite face-to-face consults or inquire about logistics of care. They’re also not meant for patients who are established within the specialty practice. Additionally, eConsults should not be about issues easily answered by consulting a textbook or clinical guidelines.
This model can optimize the use of specialty care for primary care providers and their patients. This provider-and-patient-centered intervention creates advantages for these stakeholders:
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3Patients and Medical Jargon from cover
Jargon Oblivion
Working in a hospital setting, we’ve heard examples of when “patient and family-centered rounding” goes well and when it goes poorly, in part, due to this jargon use. Why do health care providers continue to use medical jargon in patient encounters, despite knowing they shouldn’t? Our research team at the University of Minnesota Medical School hypothesized this was largely due to what’s been coined “jargon oblivion.” This concept is that doctors and nurses spend so much time training and being immersed in the medical world they forget which words and phrases are commonly understood by the general public. Medical professionals have invested years in learning the foreign language of medicine, designed to specifically and efficiently communicate with one another, though not intended for communicating with our patients.
Born out of frustration in hearing technical, jargon-filled sentences used at the bedside or in a clinical setting, our research team set out to answer some very clinical questions: What is the lay public’s understanding of common words or phrases typically encountered in medical settings? What about common abbreviations we hear used regularly? What’s their understanding of technical words or disease names—words like afebrile or
myocardial infarction? Do patients understand the medical roles and titles we use when introducing ourselves in a clinic or hospital-based practice? We began with a literature review, seeking answers to our clinical questions. We found articles that addressed some of those questions, but there were still large gaps in our understanding of the lay public’s knowledge and perceptions about medical jargon. Previous studies reported that technical terminology, abbreviations and acronyms The public remains confused by many of the medical roles, were the most common types of jargon utilized. Some studies were performed in doctor’s offices, ranks and specialty names. some in other medical settings like emergency department waiting areas. However, we felt these could mismeasure the public’s understanding by cherry- picking from a cohort of people already seeking care under a given specialty, resulting in an anchoring bias. There are also context clues present in a medical setting that may point people in one direction or another in terms of an answer.
Seven Deadly Sins
Drs. Mike Pitt and Marissa Hendrickson, two collaborators on our new research project, had previously published on their proposed classification system of medical jargon (“Journal of General Internal Medicine,” 2019, cited with the authors’ permission), which divided jargon into seven categories. They defined technical terminology as words learned in medical school. This would include disease names, tests and anatomical names. Alphabet soup represented acronyms and abbreviations. Examples of these are CBC, NPO, EKG, MI and PCP. Medical vernacular are words that may be familiar to the public, but are not universally understood, for example, Minnesota Physician digital sepsis and steroids. TV medical dramas have exposed the public to a lot of these types of terms, without giving them a complete understanding of access now available what they mean. Medicalized English is the category of words which have a well-understood meaning in common usage but often have a different meaning in medicine, sometimes even the exact opposite meaning. This Visit mppub.com to activate your includes words like negative and positive. In most contexts, negative digital subscription and read us typically indicates something bad, such as negative feedback or negative implications. However, in the medical context, negative typically has the online wherever you go. opposite meaning; a negative test result is favorable, implying that you don’t have the disease or condition screened. Other examples would include words · Never miss an issue like tenderness or phrases like “I don’t appreciate a liver edge.” Unnecessary · New reader-friendly format synonyms are overcomplicated terms used in medicine even though there are readily available alternatives. This includes saying upper extremity instead of arm, or erythematous instead of red, which overcomplicates the message. They defined euphemisms as words or phrases that health care workers might use in trying to make their concept more understandable, when in fact it may open the door to more potential misunderstandings. An example of this would be telling a patient they have bugs in their urine when trying to explain a UTI. Another example would be when a care provider mentions a spot on the lungs when trying to say there’s an unexplained finding on a patient’s chest x-ray. This also applies to times when a physician is trying to lighten the tone of their language, for example substituting died with expired. Finally, judgmental jargon was coined to indicate phrases which may be perceived by the public as derogatory. Doctors may write in their www.mppub.com notes about a patient’s chief complaint or document that their patient denies
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drug use. In today’s world of OpenNotes, giving patients access to all their medical records, it’s not a stretch to imagine patients reading this in their provider’s notes and becoming angry: “I wasn’t complaining about my back pain,” or “I haven’t been using drugs, why didn’t they believe me?”
Developing the Study
Using this paradigm of different jargon types, we felt the medical literature fell short of testing the public’s knowledge of medical jargon. We sought to answer novel questions with nuanced layers. To do this kind of research, we didn’t need to collect any body fluids, manipulate test tubes on a benchtop or even collect any protected health information (PHI). We needed to survey the lay public, but how to go about it while avoiding the anchoring bias of prior studies? We opted to conduct our surveys at the Minnesota State Fair, where we’d be more likely to get a cross-sectional look at the Minnesota public. By 2019, attendance at the state fair reached a record high, making it the highest per capita attendance of any state fair in the U.S., with approximately 20% of the state’s population in attendance.
The University of Minnesota operates its Driven to Discover (D2D) research building throughout the run of the state fair and allows selected projects to be conducted there with a voluntary audience. The building sees foot traffic across a typical year’s 12-day fair of about 60,000 people, with over 20,000 enrolling in various research projects pre-pandemic. This provided
us a forum to engage with the Minnesota public, and some of the necessary tools, for example, tables, chairs and iPads. First, we formed a team to develop our research questions, including alignment with a UMN statistician. We next embarked on some self-learning in how to design effective research surveys. We designed our anonymous surveys, using a combination of multiple-choice questions and fill-in-the-blanks, allowing both quantitative and qualitative analysis. We laid out our intended research protocols and applied to the UMN People had the misconception Institutional Review Board (IRB), obtaining their that an occult infection had exemption that this did not fall under formal something to do with witchcraft. human subject research. Applying for a small grant enabled funding for our limited expenses, primarily covering the cost of our giveaways and research costs, totaling just a few thousand dollars. Before performing our study at the fair, we opted to break up our larger survey into three smaller ones to keep volunteer participant time down to a maximum of five to ten minutes. We also adapted the survey to an electronic tool, REDCap, which enabled us to collect data via the D2D iPads. This platform also stored the de-identified information for later analysis.
Results and Takeaways
Ultimately, we found many interesting findings, some of which have already been published and others which are still getting drafted for submission. Patients and Medical Jargon to page 164
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3Patients and Medical Jargon from page 15
One of our biggest takeaways is that the public remains confused by many of the medical roles, ranks and specialty names commonly discussed with patients in medical settings (“Journal of Hospital Medicine,” Sept. 2022). Twelve percent of our sampled public could place physicians in the correct order of their medical ranks: medical student, intern, senior resident, fellow, and attending. Most (44%) believed the senior resident is the most experienced; only 27% placed the attending there. The public also lacks understanding of many medical specialty names. We asked participants to answer questions like: “Pulmonologists are doctors who take of what.” The least understood four fields were nephrologist (20%), internist (21%), intensivist (29%), and hospitalist (31%). Our qualitative analysis of the free-text responses also uncovered some fascinating misconceptions. For example, four percent of respondents thought that a nephrologist is a doctor specializing in death. The top five most understood fields we surveyed in our study (which was not inclusive of all medical specialties) included: dermatologist (94%), cardiologist (93%) and a tie between pediatrician (89%), neurologist (89%) and gastroenterologist (89%).
We futhermore found most participants knew that “negative cancer screening” results meant they did not have cancer, but fewer people
understood that the phrase “your tumor is progressing” was bad news or that “positive lymph nodes” meant the cancer had spread. Our representative sampling found the public did not understand the words afebrile, NPO, or occult infection. In fact, more people had the misconception that an occult infection had something to do with witchcraft than correctly understood it implied a hidden infection in their bodies. More participants understood “Your blood test showed me that you do not have an infection in your blood” than those who were told “Your blood culture was negative.” Most understood that an unremarkable chest x-ray was a good thing, but much fewer knew that a clinician describing a finding in their chest x-ray as “impressive” was generally bad news. We also learned some interesting things about conducting this type of survey research about jargon. We learned that the people at the state fair who were willing to participate in jargon-based research were generally older, more educated and female-predominant. This presumably represented those who were more willing to step away from the food, shopping and entertainment at the state fair to take a survey to enhance medical knowledge. If anything, we measured a group that was more likely less than a perfect cross section of the public to answer correctly about our surveyed medical terms and phrases. That said, this method of surveying the public at a state fair was a statistically reasonable means of sampling the public’s knowledge and was an efficient way to enroll a high number of study participants over a short time period. We screened out any would-be participants who were less than 18 years old and anyone who had personal medical or nursing training. Just like a sampling of the public, people had variable personal experience with the medical system or with family MOHAGEN HANSEN EXISTS TO SERVE OUR CLIENTS BY DOING WHAT WE LOVE. members in healthcare or allied health fields. Our research team hopes that a medical audience will take away some key lessons. We advocate for physicians to describe their role to their patients in addition to saying the name of their medical specialty. In place of saying, “I’m an Internist” and assuming that patients understand that word, instead introduce yourself as “an internist, a doctor who cares for all general needs for adult patients.” Instead of telling patients, “Your blood culture was negative,” avoid jargon and insert emotion words to help people understand better: “I’m glad to see your blood culture did not grow bacteria.” Avoid leading questions, like “Do you have any questions?” which asks a binary yes/no question. People may feel pressure to say what they think we want to hear, “No.” Instead, substitute: “What questions do you have?” This is a more open-ended question, which implies that we assume they do have questions and we’re ready and willing to answer them. We hope to continue our research into physician-patient potential communication pitfalls and better ways to get our messages across our patients.
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