Every time we speak with the team from the University of Wisconsin – Madison All of Us Research team at the Center for Community Engagement and Health Partnerships in Milwaukee, they tell us how researchers need our help to change the future of medicine. The program is inviting at least one million people across the U.S. to help build one of the most diverse health databases in history. They welcome participants from all backgrounds, and researchers will use the data to learn how our biology, lifestyle and environment affect health. This can help researchers find ways to treat and prevent disease. One thing the Milwaukee team wants to do is to leave something for the community by building community scientists. You have read here how the team is creating cohorts or affinity groups to come together to use what they learn about their personal health to impact the future of health. Recently, the team was featured in a webinar presented by the Network of the National Library of Medicine and SciStarter, an organization committed to citizen science and enabling people from all walks of life to advance scientific research. We talked to the team about that discussion and asked them the same questions.
Milwaukee Times: What makes your approach to community outreach unique?
Vivian King, UW All of Us Milwaukee Communications Advisor: As you know, our work with the All of Us Research Program is through the University of Wisconsin – Madison where we are one university. Two sites. In Milwaukee, our role is to specifically engage underrepresented communities through the Center for Community Engagement and Health Partnerships in Milwaukee. At our center, the community is at the heart of everything we do. We utilize an Asset Based Community Development model that looks at the strengths and assets of the communities we serve, from businesses and schools to churches and organizations, down to the talents and skills of individuals within the community. We believe our communities have everything they need to find solutions to any problems they have or issues that arise. That model is now a national model that was honed and championed by our courageous leader, Gina Green-Harris, the director of the center and co-investigator of the UW All of Us Research Program.
Milwaukee Times: What has inspired you about this work?
Dr. Leslie McAbee, UW All of Us Milwaukee Outreach Coordinator: I’ll take that question. It’s the privilege of getting to learn from and collaborate with incredible community leaders and grassroots efforts and organizations in our city. I’m a transplant originally from Georgia and most recently from Tennessee and being able to – in a very short time – meet very talented, passionate people who take their personal and sometimes negative experiences to positively impact the community is inspiring. Like Sandy Smith, a domestic violence survivor, created Survivors Journey to Peace to help women. She, in turn, connected us to Rochelle Parker who is bringing a lot of attention in the African American community to fibroids and how they impact women. This network really does organically grow, and the work being done by the community inspires me to work even harder.
Milwaukee Times: What has surprised you about this work?
Dr. Bashir Easter, UW All of Us Milwaukee Assistant Director: Dr. McAbee mentioned how the network really does organically grow, and that’s what has happened with our Men’s Cohort, and that is what has surprised me. When we first started this work, we set up tables and engaged with people at different events to encourage people to learn about the All of Us Program. Of course, the pandemic halted that. In my research to find information to bring to the community, I came across a video produced by playwright Garrett Davis. It was about men, stress, and mental health in the African American community, and it used comedy to address these serious topics. I was literally in the barbershop and ran into a friend I used to play basketball with who is a pastor now. I told him about the video and asked if he knew a group of men who might want to get together and see it. We ran into two other friends in the shop who were interested, and we picked a day within two weeks, thinking we would get about 15 men. We ended up getting 35 men. We never watched the video that first time. The men got to talking about their issues. We then knew how much this kind of dialogue was truly needed and thought, ‘What can we do with these men to get them more empowered around their health?’ Now, we are on our fourth session of what we are calling our Men’s Cohort, which will build the health literacy of individuals who have been previously muted.
Milwaukee Times: What do you think the future of healthcare should look like?
Mirtha Sosa-Pacheco, UW All of Us Milwaukee Program Manager: The Robert Wood Johnson Foundation has done a series of surveys with the Harvard School of Public Health and other entities. One topic they covered a few years ago looked at the perceptions and experiences of people across the country when they go in for health care or apply for assistance. Researchers say unfair treatment and judgment based on race or ethnicity occurs across multiple settings and that Black and Hispanic adults are more likely than White adults to report worse treatment in their health care. This results in disruptions, delays to medical care, adverse health consequences and the health disparities that we talk about at the national level. We know this is rooted in very longstanding structures and systems, but it’s important that we not just embrace and expect an education and training about racism and bias, but the main thing is trying to diversify the medical and scientific workforce in the future, so that we ensure in the future that everyone is included. We need the health practitioners, and we need the scientific workforce, and we need the community scientists to reflect everyone who lives here in the future of health. For All of Us it’s part of a new era that researchers, health care providers, technology experts, community partners, the public, everyone works together to develop this individualized health care that helps you get information about how to be healthier. We’re really excited about the diversity of health care in the future, the inclusivity of health care in the future of research.
Milwaukee Times: How do you address hesitancy toward research and important topics like vaccines?
Robert Jackson, Raising the Bar, Inc. Founder, Community Partner of All of Us: I do love the approach of the All of Us Program and even talking to Dr. Bashir in our men’s group. We are not forcing anybody. We are presenting information and we are allowing them to understand the importance of it when you put it on the table. I think that when you have that approach, it doesn’t seem like you’re trying to force anybody. A lot of times when you are forcing people, it gets them a little nervous. Even with the vaccine, people get nervous when you are saying that they have to do something. We take the approach that we’re not forcing you, we’re presenting information. We’re a part of the program, but then we kind of give them that free will. Eventually people start to want to learn more about their body and then they start to want to participate in the program.
Milwaukee Times: Thank you all for your insight. You can find the full webinar on the SciStarter YouTube channel. For more information about All of Us or to make an appointment to enroll, call (414) 219-3810, Option 1 or email allofusuwmke@hslc.wisc.edu or visit our state website at https://allofus.wisc.edu/about/.
