When the Centers for Disease Control and Prevention makes maps examining the health of Americans, my state of Mississippi lights up red, as do other states in the rural South. Part of the problem is that people living here often lack the information they need to stay healthy or manage their conditions. Far too often, information that would be relevant to them just doesn’t exist. That’s because people from communities like mine in the Mississippi Delta — rural citizens, those with low incomes, and people of color — tend not to participate in health research.
We are working to change that, but it isn’t easy. Among African-Americans, there’s a lingering distrust of health research stemming from a long history of unethical practices directed against them. In the rural Mississippi Delta, where poverty is overwhelming and far too many people die prematurely, I’ve seen firsthand how African-Americans automatically associate health research with the most high-profile example of that shameful history, the Tuskegee syphilis study. Many simply don’t see the benefits of participating in research — or fear it.
One effort to change this perception is through patient-centered outcomes research, a way of doing health research that involves patients and their communities as equal partners in all parts of the process.
In this kind of research, people living with a particular disease or condition work closely with experts to develop real-world questions that studies should try to answer. Then they remain involved in the studies as partners on the project, not just as “subjects.” This makes it more likely that the results will be relevant to others who resemble the study participants, and so help them work with their doctors and nurses to make better-informed decisions about their own health and health care.
I’ve seen this kind of research in action, and it works. Here’s just one example: Chronic pain tends to disproportionately affect low-income and minority groups. So I was thrilled to learn that a research team based at nearby University of Alabama at Birmingham found that for vulnerable individuals dealing with chronic pain, a simplified version of cognitive behavioral therapy worked better than the usual pain management these people receive.
Their study showed that cognitive behavioral therapy can be made accessible to people with low literacy and lower educational levels without losing its effectiveness. To me, what was even more exciting about this study was that patient partners contributed to the development of the study procedures and treatment materials. Their input made the findings truly patient-centered and more relevant.
The Mississippi Network for Cancer Control and Prevention, a program of the University of Southern Mississippi, and the Fannie Lou Hamer Cancer Foundation, which I lead, have also been working to advance this patient-centered approach to research. With funding support from the Patient-Centered Outcomes Research Institute, we recently created materials that explain the potential of research to improve the lives of people in the Delta.
Activities carried out in the development of the research training curriculum helped make the research process less mysterious for community members who got involved with the work, and some said they were willing to participate in research, particularly patient-centered research. With the input of trusted community members who received training to deliver health messages and who serve as important bridges between residents and local health care providers and other resources, we’ve used every channel available to us — community events, local media, the internet, billboards, you name it — to get out the word about the good that can come from participating in research. I even speak at funerals to reach people who remain skeptical or unaware of the power of health research.
The message I consistently try to convey is that participating in this kind of research will lead to better health information and treatments for our loved ones and those we see in the grocery store, at church, and elsewhere in the Delta. Overcoming the stigma associated with health research in our communities will take time but we must — and will — get there.
Freddie White-Johnson is the program director for the Mississippi Network for Cancer Control and Prevention at the University of Southern Mississippi and founder of the Fannie Lou Hamer Cancer Center in Ruleville, Miss. She is also a member of the Patient-Centered Outcomes Research Institute’s advisory panel on patient engagement.