Philip M. Alberti, PhD, Senior Director, Health Equity Research and Policy, Association of American Medical Colleges
Miller and colleague’s study of the alignment between lay and researcher prioritization of biomedical research outcomes is a timely investigation. As our nation comes to grips with sequestration, and as dollars for research funding potentially become scarcer as a result, demonstrating the value of our research outputs and outcomes is increasingly important. The authors’ recognition that “value” must include the goals of all stakeholders, including the lay public’s, is on target. But have they gone far enough in giving voice to the end-users?
Before joining the Association of American Medical Colleges (AAMC), I worked for the New York City Department of Health and Mental Hygiene, at a bureau that aimed to promote health equity between the city and three neighborhoods disproportionately burdened by morbidity and mortality. One of the challenges we faced was how to reconcile the epidemiologic-defined health needs we identified (based on vital statistics, surveillance data, and public health surveys) with community-defined needs (based on the experiences of residents in the South Bronx, Harlem, and North/Central Brooklyn). Often those two sets of priorities were not the same.
The cornerstone of our reconciliation strategy was bidirectional engagement based on the common goal of improved community health and a respect for the different strategies, skills, and targets each side brought to the table. Given the applied nature of the policies and interventions we aimed to develop jointly, many desired outcomes of these collaborations were very real and relatively immediate (for research, anyway). I’m not referring to a researcher-defined set of goals that takes years to develop but rather to a process with intermediate outcomes that were paramount to both the community and to our efforts–increased trust between government and community-based organizations; local capacity-building around data, research, and evaluation; and real-time dissemination of interim results to community stakeholders. We reached an understanding that both the city’s desired outcomes and those of the residents, defined in concert, were equally important to improve community health and to narrow and eliminate health inequities.
After a year with the AAMC, I am deeply impressed by our member institutions’ efforts to engage with the communities they serve on research projects that simultaneously address community- and patient-centered needs and researcher-defined outcomes. And, as an organization, the AAMC is committed to developing meaningful avenues to let all stakeholders know how the full spectrum of research within academic medicine benefits society, patients, health care, and our institutions.
The outcomes that Miller and her colleagues ask the study participants to rank are all undeniably important–influential scientific papers, outstanding trainees, patents, etc. And it’s heartening that lay and researcher prioritization across these outcomes is well aligned. Yet, I wonder whether other, equally important outcomes might have come to light if laypeople had been given an opportunity to respond to an open-ended question (as opposed to choosing between researcher-determined options). Would they have prioritized improved health? Job creation? Longer life? Less expensive medications and devices? Reducing health disparities? These, too, could be important outcomes of the biomedical research enterprise and should be reconciled with scientists’ focus on peer-review and patents as we attempt to demonstrate and quantify our value. Fortunately, both sets of priorities can coexist harmoniously, provided that we–scientists and the public alike–make the requisite effort to engage.