In the late 90s, researchers launched the largest effort to understand the factors driving heart disease among African Americans in the U.S. The Jackson Heart Study, which includes 5,300 participants in the Jackson, Miss., area, has led to discoveries such as specific versions of genes that can double a person’s risk of heart disease.
Long-running research projects such as the Jackson Heart Study offer deep insights into how basic biomedical research can improve health outcomes. Yet following recent changes to NIH funding and guidance around language to describe health equity research, efforts such as this large project are likely to change.
Journalists can find stories by finding out the impact of changes to such long-standing projects with deep community ties. Stories can also emerge in the form of profiles of contributors, both participants and researchers, as well as by following how changes in funding over time have shaped the trajectory of the project, its scientific contributions and its impact on health and clinical care.
In this Q&A, epidemiologist Clifton Addison, Ph.D., of Jackson State University, who has been involved with the study since its inception, describes some contributions of the Jackson Heart Study that highlight these story possibilities.
This interview has been edited for brevity and clarity.
In addition to understanding heart health, why is education a key element of the Jackson Heart Study?
We decided to develop a graduate training and education center in 2013. The realization was that there were too few African American public health or biomedical scientists. It was an opportunity for us to begin to train scholars in cardiovascular epidemiology to try to increase the availability of a diverse group of scientists who can go into the communities and serve the population. This is particularly meaningful for a state like Mississippi, where the Delta regions and most of the outward country areas do not have adequate medical services or health care services.
The focus of the Jackson State study site is to make sure that we can give back to our community. We use a lot of these community members to gather data, write manuscripts and those kinds of things. But we never really give back information in such a way that it can be utilized by the community so that they can improve their lives and lifestyles. The bottom line is really to improve the health status of our community and empower them to take control of the quality of their life.
What was the biggest challenge when the study launched?
In the beginning stages, it was very difficult to recruit African Americans to participate in the Jackson Heart Study. A lot of the African Americans in this area did not trust the scientists and the doctors, particularly, the exam center that was doing most of the exams. We spent a lot of time trying to build that trust, get them involved and engaged in supporting the study and get their relatives to participate. That’s where Jackson State had to do a lot of innovation in community engagement, and we got to a point where we had the highest recruitment and retention rates of any of the NIH-funded studies. It took a lot of work to build up that type of collaboration and trust.
Have recent guidelines around using specific words in research affected the study?
These policies restricting race and gender-related programs seem to be impacting where our scholars are going right now, and that is extremely troubling. Even if you do a study that’s exclusively based on one particular ethnic group, that information is going to be valuable not only for that particular ethnic group but for all mankind.
I work with a lot of students from around the country helping them with dissertations and other research projects. This one student flew from Florida to Jackson to discuss her dissertation today. She was trying to do something relating to psychosocial effects on the development of cardiovascular diseases. She told me that her institution decided that she could not do any studies relating to race or gender comparisons. And she is forced now to modify her title.
What other impacts are likely?
We are unclear about how the changes will affect specific collaboration strategies. In the past, institutions were encouraged to collaborate with others and include minority institutions and investigators to get funded. But all of that is up in the air. We are living in a period of extreme uncertainty.
Is this also likely to affect participants in the study?
What’s taken place and the narrative about eliminating diversity is going to really have a disastrous effect on encouraging the African American community and all diverse communities to continue participating in research. I see us going further backward and losing ground.
Resources
- Fueled by family, he grew up to become a force for Black health — American Heart Association.
- ‘Information alone is not enough’: New Jackson Heart Study leader commits to putting research into action — STAT.
- Landmark Jackson Heart Study granted six more years of federal funding — Clarion Ledger.
- From Barbershops to Science Conferences, Jackson Heart Study Pushes Black Health Improvement — Mississippi Free Press.
