Hard to reach? Karriem Watson dispels rural health research myths
During his 20-year career in public health education and research, Karriem Watson, DHSc, has seen firsthand the power of community engagement. As chief engagement officer at the National Institute of Health’s All of Us Research Program, Watson has drawn on his personal and professional experiences to inform his approach to encourage underrepresented populations to participate in health research. All of Us is a national initiative aimed at engaging more than one million people from diverse communities to share health data so researchers can advance precision medicine.
Watson recently sat down with NRHA to discuss the All of Us Research Program’s rural health priorities, how geography contributes to health disparities, and why strong partnerships in rural communities are so vital to the program’s mission.
Tell us about your background – how did you come to work with All of Us?
I grew up seeing firsthand how geography can impact health disparities. I’m from a small town that didn’t have access to a lot of academic medical centers. When I went to college at the University of Michigan, I saw how medical breakthroughs can reach populations who know about them. I was in college the first time I heard the term “clinical trials.” That was also when I learned about the United States Public Health Service syphilis study that happened in Tuskegee, Ala., and how devastation from studies like that has shaped why some populations aren’t engaged in research. I became absorbed by it.
|"When you make relationships and build partnerships that are authentic and based on trust and aligned and shared priorities, it dispels a lot of the myths that some populations ‘don’t want to participate’ in research."
I’m trained as a cancer disparities researcher. I spent more than 17 years in university settings teaching mainly on community engagement in public health. My research in cancer prevention and control has mainly looked at screenable cancers – prostate, breast, colorectal, lung, cervical – to think about why some populations don’t have access to early detection and screening, might not be aware of screening recommendations, or haven’t been included in research that has informed recommendations. I’ve looked at interventions to address those gaps and disrupt the paradigm – communities always have to go where the research is taking place, but how can we take the research to the community?
Being able to stand up and build a responsive research program for a community health center was one of the most impactful things I’ve done in my career. It helped me see firsthand how research needs to be responsive to communities that have been historically underrepresented and has aligned perfectly with my role with the All of Us Research Program.
What have been some of the most rewarding and challenging aspects of trying to engage populations that have been underrepresented in biomedical research?
When you make relationships and build partnerships that are authentic and based on trust and aligned and share priorities, it dispels a lot of the myths that some populations “don’t want to participate” in research. Even the language “hard-to-reach populations” has always been challenging for me, because I don’t think of a population as hard to reach – I think we don’t do a good enough job of reaching those populations and going where they are. I work with a lot of minority men, and that’s another population that has been historically underrepresented in research and categorized inappropriately as “hard to reach.” Through community engagement and partnerships, I’ve found that those populations are not at all hard to reach.
One of the All of Us Research Program’s values is that participants are partners. Prior to enrolling the first participant, we had established national community engagement partners. Community members were at the table helping us think through how to reach populations that have been historically underrepresented in research. We have more than 44 participant partners who enhance the design, implementation, and use of All of Us data, resources, and results and help inform the program by contributing to its governance and oversight.
|"Communities always have to go where the research is taking place, but how can we take the research to the community?"
The program also prioritizes diversity, equity, and inclusion. We have always looked not just at race and ethnicity but also geographic diversity. That’s how conversations with NRHA began – rural communities are underrepresented and often older. Often research sets out to intervene on a particular topic and has narrow inclusion or exclusion criteria. All of Us is looking to collect data from one million or more people over a period of time, so we are able to include populations that are living with multiple and various health conditions and populations that are healthy as well.
What are some of your specific rural health priorities for the All of Us Research Program?
One of our priorities for 2023 and beyond is to think about the issues of access and awareness that rural communities have experienced in learning about the All of Us Research Program. One thing I was able to take away from speaking at NRHA’s Annual Rural Health Conference was the importance of messaging. Rural populations have so much to prioritize. How do we bring in research so it doesn’t seem like either is an afterthought or a distractor to everything else that’s happening? Rural communities, populations, researchers, physicians, and providers must be at the table with us as we do this so rural populations are not forgotten about.
|"We say your ZNA can be just as important as your DNA. There are geographic differences in health outcomes in some communities from one ZIP code to the next."
We know geography matters. I don’t live in a rural area now but I live in the Chicago area where ZIP code matters – we say your ZNA can be just as important as your DNA, because there are geographic differences in health outcomes in some communities from one ZIP code to the next. It is similar in rural areas. My family is from rural Arkansas and Mississippi. I think about the health disparities many of my family members faced as a result of not having access to innovative and cutting-edge treatments. Many of my family members were farmers, and I think about their priorities – tending the land and taking care of their family. It was hard to go to the doctor, especially when you had to travel two hours there and back.
What roles can rural leaders and providers play in engaging their communities in the All of Us Research Program?
One key way rural leaders can help engage their communities is through awareness. When opportunities arise, have conversations with community members about the importance of research participation. But the burden should not fall solely on providers in rural communities, because they are already carrying a lot of the burden to address health disparities. Intentionality should fall on research institutions and the federal government to make sure we provide resources and opportunities for rural partners to drive engagement. Our rural partners also regularly help us identify needs so we can provide training and resources. I would definitely love to thank our partners and enrollment sites in rural communities. We recognize that engaging in research is often on top of the health care they’re already providing.
Since 2018, NRHA has been a proud partner of the All of Us Research Program. All of Us is a historic precision medicine research project aimed at accelerating health research. The program is inviting one million or more individuals living in the United States to help build one of the most diverse health databases in history.
The All of Us Research Program Researcher Workbench is a cloud-based platform where researchers can access registered and controlled tier data and use powerful tools to support analysis and collaboration.
Learn more about NRHA’s recent work with All of Us and find out how to enroll here.