From its earliest days, PCORI has been convinced that solving the problem of health and healthcare disparities is a critical need for the medical profession and healthcare system. In fact, addressing disparities is one of our five National Priorities for Research.
Disparities research, PCORI style, focuses on using comparative effectiveness studies to identify treatments and systems-level approaches that can reduce and eliminate this problem. Sometimes, these methods are tailored versions of existing care options redesigned to be more effective for a specific underserved population. In other cases, they are entirely novel approaches designed with and by the population itself in collaboration with researchers and delivery systems.
A Broad Portfolio of Disparities Research
Our disparities work includes a range of patient characteristics and populations, including race and ethnicity, but also addressing disparities linked to geographic location (e.g., rural populations), socioeconomic status, sexual orientation, and other factors. However, a substantial proportion of the studies we’ve funded across our research portfolio—167—specify African Americans as a study population.
These projects involve a variety of interventions and conditions that disproportionately affect African Americans. For instance, PCORI has made major research investments in the areas of sickle cell disease, asthma, and high blood pressure—all focused on African-American populations. The interventions being studied include health education tools tailored to specific audiences. Other projects compare self-management techniques that empower patients to participate in their own care. In one study based in Alabama, patients and researchers are assessing strategies for improving understanding of treatment options for African Americans diagnosed with chronic pain and depression.
The patient voice is integral to all of the work PCORI does, and we try to incorporate as many voices as we can from different racial, geographic, and socioeconomic groups. This is particularly important for African Americans, who have been underrepresented in medical research. With our disparities work, we hope to produce evidence-based results that allow African Americans, as providers and patients, to make informed decisions that lead to better outcomes and ultimately, help reduce disparities.
The Patient Voice
One of our patient partners working toward that change is Neely Williams, MDiv. She’s an African American from the Nashville area who works as patient co-investigator on a project that compares the benefits and risks of several types of bariatric surgery. She has seen the impact of engagement firsthand. She says, “PCORI engages patients in meaningful, respectful ways that allow them to feel like not a subject, but a part of the solution to the problem they’re facing.” That’s the essence of our approach—we recognize that health research works best when patients, as well as other stakeholders such as physicians and nurses, help plan and conduct the study.
We believe that health care and health itself can improve for all patients and communities if they become involved in planning and conducting the research. We have been gratified to experience the high level of readiness, interest, and creative ideas springing from members of the African-American community across the country who’ve joined us in our work.