ARM 30th Anniversary Reflections – The Growth of Disparities Research by Anne C. Beal, MD MPH

As we prepare for the 30th Anniversary AcademyHealth Annual Research Meeting (ARM), we've asked leaders in the field to share some of their memories of the event and perspectives on how the field has changed since our first meeting in 1983. Below is a submission from Dr. Anne Beal, Deputy Executive Director and Chief Operating Officer, Chief Officer for Engagement, Patient-Centered Outcomes Research Institute (PCORI), and a former member of the AcademyHealth board of directors.  Health disparities research was barely in its infancy 30 years ago at the time of the first AcademyHealth Annual Research Meeting. Few people recognized the increased illness and death rates experienced by African Americans and other minority racial and ethnic groups. However, the past two decades have seen exponential growth in health disparities research. And today the field is poised for an additional burst of productivity, taking advantage of opportunities created by the Affordable Care Act (ACA) and recognizing that many factors must be simultaneously addressed to advance health equity. In 1985, a Federal report first called attention to the disproportionate burden of illness and death experienced by underserved racial and ethnic communities. Margaret Heckler, President Ronald Reagan's Secretary of Health and Human Services, described that disparity as “an affront both to our ideals and to the ongoing genius of American medicine.” A few years later, the American Medical Association called for the elimination of the “unjustifiable” differences in medical treatments provided to African Americans and whites. Those disparities received little additional attention during the following decade. Then, the discourse began to change. The Clinton Initiative on Race in 1998 provided the first funding for studies on health disparities providing a source of support for disparities researchers. In 1999, Dr. Kevin A. Schulman and his colleagues published an influential article demonstrating physicians’ racial bias in treatment of patients complaining of chest pain. Four years later, the Institute of Medicine released a landmark review that pulled together the research literature to present irrefutable evidence for pervasive disparities in health care. These events helped foster a new social milieu that considered health and healthcare disparities to be unacceptable. The AcademyHealth Annual Research Meeting was central to the subsequent activity in disparities research. At that meeting, you could report work on health disparities and hear about findings across many areas. Unlike specialty medical conferences, the meeting covers a broad range of topics, from child health to eldercare. As such, it has provided an opportunity for both junior and senior researchers to report findings in the cross-cutting area of disparities research. Furthermore, the AcademyHealth meeting emphasizes policy-relevant research, so it has been a place to explore health effects at the institutional level. In my previous positions as a funder, first at the Commonwealth Fund and then at the Aetna Foundation, I found it very useful to hear from grantees and potential grantees at this meeting to learn about emerging issues in disparities research. The first wave of health disparities research described the problem. Again and again, as researchers addressed different medical problems and treatment options, disparities showed up. Over the years, the methods for research improved, particularly in the areas of collecting race and ethnicity data to allow for the identification of disparities. As a result of that work, we now have federal standards for collecting data on race and ethnicity and advanced methods to analyze the results. Simply documenting disparities is not sufficient. We need to discover how to eliminate them. To develop effective interventions, we must answer the question: What causes health disparities? A refocused research effort has identified many factors, including segregation, geography, provider resources, unconscious bias, and communication barriers. The work has shown that racial and ethnic differences can be eliminated under some conditions, such as when quality of care increases and when people have regular sources of medical care. Nevertheless, recent evaluations show that health and health care disparities persist even after targeted interventions. Solving the problem requires the collective efforts of both the public and private health care systems. The ACA includes provisions to improve health care access and quality that could significantly benefit racial and ethnic minority populations. That legislation also provides the health services research community with an unprecedented, coordinated set of opportunities to develop, test, and implement interventions to advance heath care equity. For example, ACA elevates the National Center on Minority Health and Health Disparities to an Institute and creates the Patient-Centered Outcomes Research Institute (PCORI), which emphasizes research on health disparities and potential means to eliminate them. At this juncture, we need to apply the rigor of health services research to the complex problem of discovering what interventions work. Researchers must elucidate the multiple factors that contribute to disparities and use that knowledge to design multifaceted interventions that reduce disparities in care and outcomes. It isn’t productive to focus on a particular factor; researchers must simultaneously consider many indicators of health and health care to create an evidence-based action plan for improving health care quality. Personally, I’d also like to note the increasing diversity of perspectives represented by AcademyHealth. When I first attended the annual meeting in 1990, I saw few people who looked like me. Since then, there’s been growing diversity on a number of fronts. I‘ve seen a large number of women and people of color coming into the field. There’s also more variety in the participants’ specialty areas. Previously there were large numbers of researchers from finance and policy fields like health economics, but the organization now includes more physicians, nurses, and other health professionals, and there’s an emphasis on encouraging young researchers and embracing the diversity of membership. Also, the scope has expanded to include more real-world topics, where policy meets practice, with a valuable emphasis on public health and translating research findings so that they have an impact in the field. --Anne C. Beal, MD, MPH   Registration for the 2013 AcademyHealth Annual Research Meeting is now open.  The ARM is the premier forum for health services research, where more than 2,400 attendees gather to discuss health policy implications, sharpen research methods, and network with colleagues from around the world. The ARM program is designed for health services researchers, providers, key decision makers, clinicians, graduate students, and research analysts.

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