Building trust with communities underrepresented in health research

By Leo Barolo

The All of US Research Program – UW (AoU UW) aims to bring the future of personalized medicine to Wisconsin residents. The project is part of the ambitious NIH funded nationwide research effort All of Us Program to recruit one million or more people to establish a database of health information, including genome sequences, with the goal of understanding how differences in genome sequences impact human health. The knowledge gained will foster precision medicine, in which a person’s health care is tailored to their particular genes, lifestyle and environment.  

However, historical inequities have biased genomic knowledge since many groups of people have been left out of past research efforts. To combat this, the program actively seeks out participants from groups underrepresented in health research. But fixing this skew in research participation and genomic knowledge has its own challenges.  

Research suggests that simply inviting people to participate is not enough. A major barrier is that many people from minority groups harbor mistrust in the medical establishment¹, often attributed to past unethical practices such as the Tuskegee syphilis study ^2,3, the exploitation of Henrietta Lacks³, and forced sterilization programs⁴. As such, the All of US Wisconsin program approaches communities ready to address this history instead of ignoring it, while also recognizing contemporary obstacles such as socioeconomic disadvantage, restricted access to health care, and social inequality in health care^5,6.  

Addressing mistrust and finding solutions within Wisconsin  

Spearheading this effort on a local level is the AoU-UW Engagement Team, a small group that directly interacts with target communities. One member of this group is Tyson Jackson, Senior Community Outreach Coordinator for the AoU-UW and the UW Collaborative Center for Health Equity (CCHE). He focuses on engaging black and brown communities and introducing them to research, and he believes that understanding why the data discrepancy exists is the first step towards eliminating it.  

Jackson explains that as medical researchers often sample participants who regularly go to medical facilities, some groups will be systemically left out: “When you don’t feel comfortable in the health care facility, you don’t have insurance, or you can’t afford things, you miss that opportunity to engage in research.”   

Building trust is a process that demands time and transparency. To do this, Jackson often visits and interacts with the communities not only as an All of Us representative, but as an individual. He says of the community members, “You still may say no, but you may see me 3 or 4 different times and I’m going say ‘hey, how’s your day?’ And then one day you might come in and say, ‘can you tell me again about that project that you’re working on?’  I think that’s where you can meet folks where they’re at. Because the last thing we want to do is say, ‘hey, we know it’s best for you. You should do this.’”  

Visiting communities directly also helps to address transportation challenges, which can be an obstacle, especially in rural Wisconsin communities. “It’s the same reason why it might be difficult for them to seek medical care or receive medical attention. And so really it comes down to how mobile can we be to set up the engagement,” illustrates Jackson.  

Another problem is that some underrepresented groups have concerns regarding the structure of research, stating that the nuances of their perspective are often not captured¹. A key strategy is to create opportunities that allow their voices to be heard.  This is why the program’s approach is to visit communities and build honest and meaningful relationships through partnerships with trusted organizations and direct volunteerism, both financial or in person.   

Engaging participants in research

Finding a person’s motivation can also help them engage. While many individuals are not aware of the genetic disparities that the program is tackling, many people participate to learn more about their ancestry or impacts to their own health. All of Us contacts participants if researchers find increased risk for a health condition and connects participants with a genetic counselor for free.   

Jackson points out that due to the size of the program, All of Us may not be the ideal introduction to research for some participants. He mentions that if potential participants are particularly interested in genetic information that is not part of the scope of the program, or if the amount of information collected is intimidating, he often explores other research opportunities that may be a better fit. “Instead of saying ‘Hey, let me draw your blood’ or ‘can I have your health information?’ I’m saying ‘just tell me what your thoughts are. This is also research.’ And I think all those play key roles in that community engagement, that trust and that ability to bring folks along,” he illustrates.  

Jackson hopes that a positive introduction to research will motivate underrepresented people to consider research as a career - participants can experiment with that through the citizen scientist opportunities within All of Us and even explore publicly-available participant data through the All of Us data browser.     

The All of Us database will help researchers expand their knowledge of underrepresented groups by developing the infrastructure, computing framework, means to secure the data, and participant recruitment, all helping to accelerate medical research.  

Researchers interested in exploring published data can do so through the interactive All of Us NIH website. Additionally, All of Us Research Program funding opportunities are available at https://allofus.nih.gov/funding-and-program-partners.