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Collaborations between scientists and nonscientists are shifting disease research toward what may become its new paradigm

An excerpt from We the Scientists

by Amy Dockser Marcus

ntil the late nineteenth century, there were no professional scientists. Science was pursued by anyone with curiosity, intense passion, or personal interest in a topic. … In the twentieth century, however, the notion that anyone could be a scientist gave way to the establishment of a profession. Science became a guild. To get in, you needed years of study, the acquisition of expertise, specialized training under the tutelage of seasoned veterans, and a university degree.

Over time, scientific projects got more complicated, and more expensive, to run. Governments stepped in, providing grants to fund research. As stewards of public monies, they required that recipients demonstrate some sort of sanctioned expertise. Professionals directed the studies, evaluated the utility of the projects, gathered the data, and analyzed and published the results.

Scientists still needed help from wider society. For one thing, they wanted patients and families to lobby Congress for more government funding to support basic science and advocate for bigger budgets for agencies that gave research grants, such as the National Institutes of Health. They needed patients to enroll in the clinical trials they organized, and to donate blood, tissue, and other samples to help advance their research, which revolved around questions they found the most interesting. …

***

When I first began reporting on the NPC [Niemann-Pick disease type C] project, I could see the parents and scientists were trying to construct a fundamentally new kind of collaboration. They were good people who all wanted to save the children’s lives. But despite their common goal, it quickly became apparent that they had different attitudes and approaches toward the production of science. For over half a century, the focus in medical research had been on discovery launched by an individual investigator and experiments inside a lab. The parents tried to force the lab doors open. They didn’t intend to follow the usual rules. …

… This new group of citizen scientists started collecting data about themselves. They released patient-driven studies online — and found themselves cited as experts by the director of the NIH, who in a blog post about their work linked to their self-reported data alongside a paper published in a traditional scientific journal. The pandemic offers a historic opportunity to finally build an infrastructure that can both enable and grow citizen science. It is too soon to know if the sense of urgency and spirit of collaboration that marked the early days of Covid will continue once the acute phase of the pandemic starts to recede. I realize that there are scientists who likely still remain unconvinced that collaborating with citizen scientists is a good idea. They might continue to insist that only those with elite and specialized training can do the work they do, or raise concerns that people who are not professionals could end up pursuing questionable or even potentially dangerous treatments in a desperate attempt to save themselves or their loved ones. There are also certainly members of the public that don’t see themselves as experts, capable of shaping and directing and participating in meaningful scientific research. Still, I like to think that after they read this book, they will be persuaded by the evidence and change their minds — just as the very best scientists often do. …

Chris Austin [MD ’86] was the neurology resident on call one evening in 1989 when a severely ill patient arrived by ambulance to his hospital in Boston. The patient had latestage amyotrophic lateral sclerosis, or ALS, a fatal neurological disorder also known as Lou Gehrig’s disease, that paralyzed people’s muscles. The man had signed a do-not-resuscitate order and wanted to die at home, but because of a mix-up, the paramedics revived him. Angry that his wishes had been disobeyed, the man requested that the ventilator keeping him alive be shut off. Doctors at the hospital complied with the patient’s plea. The twenty-nineyear-old Chris sat with the family at the bedside, watching as a life ebbed away. It took three hours before the man took his final breath.

Through the long and agonizing vigil, Chris felt increasingly enraged not only at his own helplessness but at a system that seemed to be failing its most central task: healing the sick. Chris had undergone years of grueling and intense training at some of the top institutions in the country. He graduated summa cum laude in biology at Princeton University, earned his medical degree from Harvard Medical School, and was accepted for a top-tier neurology residency at Massachusetts General Hospital, one of the premier hospitals in the country. He was the product of the best that medicine had to offer, and yet in his retelling of the story, he couldn’t offer much. He always emphasized that his job that evening was to “turn off the monitors when the patient died.” His moral distress that he could not do more shook him to the core. …

The diseases Chris encountered most frequently in the neurology clinic were intractable and devastating. Huntington’s disease relentlessly destroyed nerve cells in the brain. Alzheimer’s disease stripped people of their memories and identity. Chris’s patients came into the office seeking hope and, more often than not, he had no effective therapy to offer. He usually wasn’t even able to point to a promising drug on the horizon. “I couldn’t stand simply telling patients with incurable neurological diseases that there was nothing we could do for them and having that be my life’s work,” Chris recounted.

As a doctor, Chris saw one patient at a time and tried to alleviate their symptoms. He valued the relationships he developed with his patients and their families. Working in a neurology clinic, taking care of people over the course of many years, gave him insight into the magnitude and burden of the diseases he treated. He saw the devastation that the loss of memory, abilities, and function wreaked, not only on the patient but also on loving family members, friends, and colleagues who struggled to help. The reverberations from the death of a single person affected an entire community. Chris tried hard to improve patients’ lives, but he decried the system that left him with so few options. He wanted to try to change the course of the disease not only for the person sitting in front of him but also for “the many, many patients out there, even those I won’t see,” he said.

He set out to understand the ecosystem of medicine. He joined the lab of Constance

Cepko, a developmental biologist and geneticist at Harvard Medical School. He figured that by studying genetics, his findings might lead to advances in the field, potentially reaching more people than he could care for in a clinic. In the lab, he learned the foundations of basic genetics, devising experiments with model organisms such as mice and fruit flies that sometimes shared important common genes with humans. …

While Chris spent most of his time running experiments in the lab, he continued to see neurology patients, moonlighting at Massachusetts General as well as at a community hospital that had a walk-in clinic where patients with no insurance could come in off the street …

Science and the scientists who loved and practiced it were isolated from the people they wanted to help and needed to engage in order to advance. “Research is ultimately about the patient, about humanity,” Chris said. “But on a day-to-day basis, it is divorced from that …”

Everywhere he looked, he saw a divide. Researchers didn’t focus on the body as a whole, but rather specialized in its many different parts; cancer doctors treated the breast, prostate, or brain as if they were separate entities, even though the gene mutations that caused cancer in one organ might be the same in another, or located along common molecular pathways. Drugs that were already being prescribed for one disease might be useful in treating another, but there was no systematic program that tried to identify these compounds. …

By November 2002, he was ensconced at the NIH as senior adviser for translational research to Francis [Collins]. …

Chris came to the NIH at a time when the agency’s mission was the subject of public debate. The NIH’s funding came from the people, and therefore, some scientists argued, the money should be spent on basic research, studies that focused on fundamental scientific questions or tried to understand the processes that drove disease. Funding the research to turn ideas into drugs that could be used at a patient’s bedside should be left up to the pharmaceutical companies, this line of argument went.

Chris knew from his own experiences that patients, especially those with rare diseases, could not rely on drug companies to find solutions for them. One only had to look at the statistics: there were around seven thousand known diseases that affected humans, and only five hundred had treatments. Many people were left without recourse or options. …

***

Chris set out to build a lab containing sophisticated equipment that could do rapid screening of drug libraries, enabling a more accelerated approach to identifying potential compounds to treat disease … Chris built a robotics system at the NIH lab that could do the type of automated screening typically employed at drug companies. It cost around $30 million, was fully automated, and included three robots that worked round-the-clock, twenty-four hours a day, seven days a week. Chris estimated the robots screened hundreds of thousands of compounds every day. …

To help spread the word about the lab, Chris spent a lot of time on the road traveling … Chris figured that the people most likely to want to partner with NIH would be scientists working at universities or medical centers who didn’t have access to the kinds of sophisticated screening technologies the new NIH lab boasted.

But increasingly, much to his surprise, Chris also fielded requests for help from people who were not scientists. Many of them barely recalled the fundamentals of their high school biology class but had turned themselves into experts on conditions most general practitioners never saw. At rare disease conferences, after Chris gave a talk, ordinary people with no scientific training at all frequently waited for the crowds to disperse so they could tell their stories to him. Some were parents of children with fatal diseases who had raised funds and were looking to support good ideas that might help their children and accelerate the development of a drug.

Chris wanted to build a scientific team consisting of patients and advocates and parents as well as scientists, clinicians, and researchers. Could professional scientists and citizen scientists work together as partners and combine their different types of expertise? Scientists could never know the answer for sure unless they ran the experiment. Now all Chris needed was an opportunity to test the idea. He finally got the chance in November 2007.

More than a dozen people showed up for the meeting in Chris’s lab to discuss the prospect of working together. …

… Chris took the visitors to see the robots. Standing together, the parents and scientists watched as a robot claw added patients’ cells to small plates, then moved them to another place in the work area where drugs and chemicals were added. During the tour, [a visitor] asked Chris Austin whether they had named the robots yet. The scientist said they had not. “I have a name for you,” [the visitor] said. “I think you should name it Hope.” … Looking back on the day years later, [Austin] said, “I felt like we might actually be able to conquer this thing working together.”

Amy Dockser Marcus, MBE ’17, is a staff reporter for The Wall Street Journal. In 2005, she was awarded the Pulitzer Prize for Beat Reporting for her series on cancer survivors and the challenges they faced living with the disease. This edited excerpt from her 2023 book We the Scientists: How a Daring Team of Parents and Doctors Forged a New Path for Medicine appears with permission of the author and the publisher, Riverside Books Penguin Random House.

What skills would you recommend clinicians start learning today to be better prepared for tomorrow?

Robert Colvin, MD ’68

Clinicians should develop an understanding of how bioinformatics, genetic engineering, artificial intelligence can assist them.

Vic Piotrowski, MD ’74

How to manage and balance time commitments to profession, family, and social activities, and how to plan personal finances, both short- and long-term.

Nneka Holder, MD ’97

Learn time management skills and how to be strategic about the project you pursue. Also focus on developing an approach to taking a history that is based on humility and an open mind. This approach will improve communications with patients and ultimately lead to better compliance with treatment plans and recommendations.

Jan Polissar, MD ’61

The use and understanding of artificial intelligence is important. It already can detect cancer on X-rays better than clinicians can. I suspect soon an automated preliminary interview with a patient will enable orders for lab tests and provide a comprehensive differential diagnosis list for the clinician. The tool could also provide customized education for the patient and their family and treatment recommendations for some conditions, especially for patients in areas short on medical care.

Christopher Baker, MD ’74

Instill the importance of becoming lifelong learners who are able to adapt to change. Develop the skills for delivering patientcentered care and learn about tools that help you care for yourself and your family and friends, to better maintain resilience and avoid burnout.

Marguerite Barnett, MD ’79

The skill of knowing how to listen to the patient.

Craig Comiter, MD ’92

I think it’s important that clinicians speak a second language fluently.

Scott Wasserman, MD ’97

We took a statistics course during our first or second year. It was not one of my favorites, but now, more than 25 years later, not only do I love statistics, I know that a strong foundation in statistics is critical in medicine. Being able to parse the medical literature and understand how to apply clinical trial results and analyses to your patients is essential.

Susan Haas, MD ’79

Clinicians need to know about public health principles and practices.

Steven Jonas, MD ’62

In addition to trying to do the best you can in your medical studies, also try as best you can to stay up with what is going on in the outside world. Medicine, politics, and the economy are intermeshed, as the COVID pandemic has shown us all too well.

Robin Yuan, MD ’78

Emphasize the development of communications skills and learn how to maintain compassion with their patients.

Michael Hirsh, MD ’79

Our contact with patients is absurdly short so honing skills associated with observation and active listening is essential — and priceless.

Mary Flowers, MD ’78

Typing and computer skills to deal with electronic medical records and patience (not patients) to deal with insurance forms and phone calls for authorization for procedures and treatments.

James MacDonald, MD ’96

I would recommend students read widely and well beyond scientific writing. Have a thorough understanding of the history of U.S. medicine, with all its successes and flaws. Students should also learn to write well. There is no skill so singularly lacking from most physicians’ tool kits. Finally, I think students’ education should emphasize the development of a “growth mindset.’’ Our profession and our world as a whole are changing at ever-increasing speeds. Physicians will be re-inventing themselves throughout their careers.

Michael Quinoñes, MD ’86

Learn how to NOT be a snowflake. Life is hard.

Richard Peinert, MD ’73

Besides the usual doctor stuff, I would advise medical students to learn how to manage their money and wisely invest for retirement. I would also recommend cultivating empathy and a sense of humor.

Peter Zawadsky, MD ’68

I believe artificial intelligence will assume a greater role in establishing the diagnoses and management plans of sick patients. Artificial intelligence will be accurate only if the patient’s history is entered accurately. Therefore, medical students should concentrate on honing their history-taking skills.

Howard Kirshner, MD ’72

How to interview and show interest and empathy, how to deliver gender-based care, and how to effectively manage pain.

Brian Lewis, MD ’69

Learn to see the individuality of each patient and cherish the aphorism that “the secret of the care of the patient is in caring for the patient.” Keep your ego in check and do the kind thing — and do it first.

Karen Singer, MD ’77

Clinicians need to be skilled at using electronic medical records.

Robin Smith, MD ’88

The business of medicine. You can be a private practice physician and earn a fair wage and retain your independence from large hospital systems if you know the business side of medicine in your state and community, specifically, how clinicians are paid and what market forces are at work to determine that payment (fee for service, population health quality and efficiency incentives, for example); an understanding of patient billing and how to help patients receive quality services at lower cost; and how medical insurance works (both for patients and for clinicians) and what it means to be a part of a network.

George Lewinnek, MD ’67

I would suggest that those starting out learn how we know what we know — what is proven, what is speculation based on sound theory, what is usual and customary but has no other basis, and what may be misleading marketing. That makes it less likely that a practitioner gets caught up in a fad that later proves to be a mistake. Also, prepare to change: learn how to learn the new, especially when it involves techniques that require practice under supervision.

Robert Hodge Jr., MD ’72

Practicing medicine has become increasingly more stressful and burnout and suicide are major hazards of those delivering health care. Learn and practice the skills that can help you to lead a balanced life. Compassion and empathy are critical.

Richard Schwartzstein, MD ’79

Analytical thinking based on core physiological/pathophysiological principles to avoid reliance on illness scripts and pattern recognition. Be curious, embrace uncertainty.

Stephen Smith, MD ’63

Our profession requires multiple sources of knowledge and skills for best results. Knowledge evolves over the span of a long career, sometimes requiring change in viewpoint. Keen observation in the presence of the patient may lead to astounding accuracy and efficiency. The successful clinician develops positive and sympathetic communication skills that encourage the patients to unburden themselves of their story and engage in a management plan regarding their problems.

Lily Conrad, MD ’80

Become adept at the physical exam and taking a thorough history. Touch and examine the patient. Basic skills are being lost; these are timeless, and essential, if technology fails or is simply not available.

Cheryl Kovacs Warner, MD ’79

Essential skills to develop at the start of a career include empathetic and patientfocused care, taught as part of the interview, examination, and diagnosis; and counseling and managing care. These need to be gender-sensitive and include an awareness of socioeconomic disparities driven by race, religion, and immigration status, among others. Other skills include understanding the importance of evidence-based care that is efficient, decreases error and complexity, and improves health.

Martin-Jose

Learning how to partner and collaborate, developing an awareness of implicit and explicit bias and cultural competency, and learning the language of the predominant minority population served (most often, Spanish).

Sylvester Sviokla III, MD ’72

Develop the skills to conduct motivational interviewing aimed at changing healthrelated behaviors.

Wendie Grader-Beck, MD ’96

Learn to listen and build your capacity to share in vulnerability. These skills increase our ability to connect with our patients.

Jorge

All medical students should receive some basic education regarding death and dying. This is not the most attractive aspect of medicine, but it remains one of the most important.

Andrew Warshaw, MD ’63

In today’s world the practice of medicine must be complemented by an understanding of the business of medical practice, whether as an employee or an independent practitioner.

Jane

Every physician should have a solid understanding of statistics and a basic understanding of study design. Almost all medical advancements today need to be interpreted with an eye to understanding benefit and risk. Without understanding statistics and potentially flawed study design, a clinician cannot hope to discern how relevant the findings are for their patient or their practice.

Harvey Clermont, MD ’65

Develop the ability to have an honest dialogue with both the patient and the family. Stay current on all recent public health issues.

Gregory Juarez, MD ’92

I would recommend taking a general course in financial management to understand the language and priorities of an organization or medical group. I would also recommend a course in operations management and project management to help assist a department or medical group to bring administrative value to colleagues.

Marvin Bittner, MD ’76

Learn how to function effectively in organizations. Developing good relationships with patients is a traditional component of medical education; however, increasingly, physicians are working in organizations. This calls for another set of skills.

Daniel Kopans, MD ’73

A habit of lifelong learning and the ability to read publications carefully. Don’t just read the abstract. Were the data collected correctly, and are the conclusions supported by the data?

Matthew Keller, MD ’07

Telehealth and virtual medicine should be incorporated into medical education because they are here to stay.

Morris Fisher, MD ’68

Clinical skills. Arguably in one fashion or another we will have a fixed-cost medical system. In such a system, physicians who order fewer tests will be valued. Also, develop the ability to learn from patients and how to avoid fitting patients into preconceived categories.

Alena Balasanova, MD ’12

Start developing a capacity to self-reflect and adopt a growth mindset. These are skills that are valuable in medicine and often get overlooked in favor of more technical or procedural skills. Finding mutual meaning with patients is critical for any specialty and to do this you must first understand yourself.

Jessica Wu, MD ’93

If you can’t imagine finding joy in working for a large health care system where you are a “provider” judged by your “productivity,” I strongly recommend learning the skills to start an independent practice: leadership, accounting, and human resources. Yes, it’s a risk to turn away from a paycheck but your reward will be more time to care for patients, loved ones, and yourself.

Michael Kochis, MD ’20

Team management and leadership skills. As a surgical resident, I am struck by how much our day-to-day work depends on not only knowing the clinical medicine we are explicitly taught as students and on building relationships with patients, but also on collaborating with other doctors, nurses, and allied health professionals.

Gordon Cutler Jr., MD ’73

Develop the habit of reading daily on medical progress and develop a deep understanding of molecular biology, genetics, metabolism, immunology, epidemiology, statistics, computer science, and digital technology. Cultivate the skill to hold clear, brief, prioritybased, empathic communication that meets the patient where they are. Learn to accept uncertainty and to keep an open mind to reassess diagnosis.

Jonathan Friedberg, MD ’94

Bioinformatics, big data analysis, and artificial intelligence skills will be essential for basic and clinical research and are highly sought at academic medical centers.

Edmund Lee, MD ’96

Develop the ability to actively clear your thoughts. Modern medical practice is a barrage of information, tasks, and demands. The ability to clear your mind will allow you to focus on the one thing that is most crucial.

Felipe Jain, MD ’08

There is an enormous wave of depression surging due to social isolation, our sedentary society, and the automatic comparisons made on social media. Learn how to recognize depression. Determine how you’re going to help patients along the course of their treatment and don’t give up if your initial recommendations don’t work. Most people will get better after a few treatment trials — if they persist.

Bruce Lyman, MD ’72

Develop the ability to be intentional about asking open-ended questions such as “Tell me about that pain.” Learn to listen deeply while making eye contact with your patient and observe body language. Learn to be comfortable without a computer screen in the room. Learn “again for the first time” the skills of a meaningful physical examination.

Lise Johnson, MD ’88

Communication. Clinicians need to know how to engage with patients and form a trusting relationship and how to take responsibility for the patient and proactively communicate with all team members.

Above all else, clinicians need and will continue to need good communication skills. Patients will always need to feel heard and understood, and to be educated and advised about their health. Good communication between doctor and patient is not only crucial for the patient’s health and peace of mind, it’s also wonderfully fulfilling for the physician.

For students who seek to become surgeons, learn to read all types of imaging without a radiologist’s assistance.

Develop a commitment to self-learning by reading, attending conferences, and conducting internet searches. Develop an absolute commitment to evidence-based decisionmaking.

There will be enormous, well-meaning pressure to include added curriculum in public health, addiction, violence, and the economics of medical care. But short of extending the medical school curriculum, either into college years or after four years, faculties should continue to emphasize clinical competence, basic science, and mental health. Relevant statistics, communication skills, and demonstrable professional behavior and humanistic qualities need more time and faculty to teach them.

Thanks to all who shared thoughts on the skills that will better prepare tomorrow’s clinicians.

We hope you will share your thoughts on some of our upcoming questions. How has the oath you took during your first days in medical school influenced your practice of medicine? and Which scientific or medical development has excited you the most during your career?

Responses for these will appear in print, online, or both in the coming months.

Responses can be submitted online: alumni.hms.harvard.edu/rounds; via email: hmsalum@hms.harvard.edu; or by phone: 617-384-8520

1930s

1939

John B. Stanbury, MD July 6, 2015

1940s

1944

Edward P. Wallace, MD July 4, 2014

1947

Samuel A. Montello, MD December 31, 2022

Alexander G. Rogerson, MD August 24, 2022

William W. Waring, MD February 27, 2023

1950s

1950

Sheldon M. Levin, MD October 1, 2020

1951

Eugene Marshall Renkin, PhD November 11, 2022

Donald C. Reusch, MD

November 10, 2022

1952

W. Hardy Hendren III, MD March 1, 2022

Samuel L. Katz, MD October 31, 2022

1953

Frank E. Boyd, MD

January 14, 2020

David A. Eaton, MD September 15, 2020

Neal Nathanson, MD August 11, 2022

1954

Donald W. Clark, MD September 27, 2022

Monto Ho, MD December 16, 2013

John B. Lunseth, MD

December 22, 2022

Emanuel Rubin, MD February 13, 2021

Richard E. Senghas, MD

September 10, 2022

1955

W. Gerald Austen, MD

September 11, 2022

John T. Boyer, MD

February 15, 2023

Paul M. Prusky, MD November 21, 2022

Charles P. Summerall III, MD

August 31, 2022

Harold C. Urschel Jr., MD

November 12, 2012

Marian Woolston-Catlin, MD

September 20, 2022

1956

Samuel Bogoch, PhD September 3, 2022

Robert W. Chamberlin, MD

September 9, 2022

Wayne P. Cockrell, MD August 26, 2022

Alexander L. Kisch, MD

July 31, 2021

Charles E. Norton, MD November 14, 2020

Philip F. Parshley Jr., MD July 16, 2022

1957

Donald K. Brief, MD November 9, 2022

Donald S. Pierce, MD March 3, 2022

Harry L. Senger, MD September 30, 2022

Frank M. Weiser, MD September 11, 2022

Donald M. Yamaguchi, MD July 27, 2022

1958

Stanley P. Bohrer, MD

September 18, 2022

Benjamin V. Smith, MD

July 30, 2022

Richard L. Soffer, MD December 16, 2022

1959

Karl Engelman, MD August 19, 2022

Alan D. Persky, MD December 17, 2022

1960s

1960

Robert J. Dobrow, MD October 25, 2022

Abba J. Kastin, MD April 6, 2022

Richard J. Wurtman, MD December 13, 2022

1961

Llewellyn B. Bigelow, MD July 12, 2022

Robert K. Ockner, MD September 26, 2022

William J. Otto Jr., MD January 14, 2023

1962

Richard L. Conn, MD December 1, 2022

David L. Ravella Jr., MD August 1, 2022

1963

Jerome B. Bart, MD October 29, 2022

Wesley Peter Peterson, MD September 20, 2022

Edwin L. Prien Jr., MD September 7, 2022

Murray A. Towle, MD February 13, 2022

1964

Joseph L. Dorsey, MD November 22, 2022

Jay M. Jackman, MD January 17, 2022

Nancy Bowen Kaltreider, MD November 7, 2021

Rob R. MacGregor III, MD May 12, 2022

Robert A. Scott, MD

November 13, 2022

1965

Stanley H. Wishner, MD

June 15, 2022

1966

Norman Lippard Lasser, PhD

January 19, 2022

Norman S. Levine, MD

May 13, 2022

Maria Christine Linder, PhD

September 25, 2022

1967

John M. Dorman, MD

February 26, 2023

Richard Hudson Quarles, PhD

August 9, 2015

1969

Tamara T. Mitchell, MD

September 28, 2019

Bruce C. Nisula, MD

August 30, 2022

Michael F. Rein, MD

December 5, 2022

1970s

1971

John H. Kissel, MD December 6, 2022

1973

Stephen S. Arnon, MD August 17, 2022

Richard Morrison Fulks, MD

February 21, 2023

1974

Geoffrey M. Greenfield, MD July 30, 2022

1975

Lettie Marie Burgett, MD

August 13, 2022

1976

Beryl R. Benacerraf, MD October 1, 2022

1978

Thomas L. Force, MD November 30, 2020

1979

Debra Andrews, MD May 27, 2020

1980s

1982

Jonathan Rhodes, MD March 31, 2022

1983

Jerome C. Landry, MD July 8, 2022

1984

Evan B. Dreyer, MD PhD ’84 August 2, 2022

1985

Edward M. Andujar, MD April 1, 20213

1990s

1997

Steven Andrew Brown, PhD December 14, 2022

2010s

2010

Lauren Gilstrap Milley, MD October 21, 2022

This listing of deceased alumni includes those whose notices of death were received between September 1, 2022, and March 31, 2023.