It is no secret that the All of Us Research Program is seeking to enroll a million or more people into the most diverse research database of its kind. The UW All of Us Research team at the Center for Community Engagement and Health Partnerships has created a new approach designed to educate the community about the benefits of All of Us but also empower individuals to advocate for their own health. It’s called a Cohort Research Model, which brings together affinity groups to participate in and support the All of Us Research Program. The team has already started a Men’s Cohort. Now they are calling on all Divine Nine (D-9), historically Black fraternities and sororities. Members of the Community Advisory Board of the UW All of Us Milwaukee team who are also members of D-9 organizations share their thoughts on a D-9 Cohort.
The Milwaukee Times: Thank you for allowing us to interview you. First, why is participating in All of Us important to you?
Diane Milner, Alpha Kappa Alpha Sorority, Inc.: It seemed incredibly important to me because I’m adopted. I come into this whole situation as a blank slate. When you go to the doctor, the first thing they ask you is what your mother may have had or what your father may have had. I don’t know any of that. Having precision medicine in the future is so important because it doesn’t rely on having information about your specific parents. Being able to look at our DNA (All of Us participants can consent to receive their genetic return of results) to find out what’s going on with our health are the things that have the potential to impact our lifestyles or the medicines we’re prescribed. Having precise information when it comes to your health is crucial.
Anita Sparks, Ed.D., Delta Sigma Theta Sorority, Inc.: For me, participation is key because learning about my health is empowering, which causes me to become a better ambassador for health education and advocacy.
Ramona Dicks-Williams, Alpha Kappa Alpha Sorority, Inc.: Being a part of All of Us is important to me because it is an opportunity to be a part of historic health research. So little diversity is among health research and this needs to change so that medical breakthroughs fit us, as well. and the researchers see us in what they are doing. We cannot be an after-thought, and that is what happens if we are not part of what is going on. I am doing this not only for myself but for my family and the future of our people. We need to know why we are number one in so many health areas and why some things work for others but may not for us. We must be seen and counted, and the only way is to participate.
Lenora Brown, Delta Sigma Theta Sorority, Inc.: For years, I have watched loved ones and the underrepresented and the underserved suffer premature deaths due to poor health care. They received one-size fits all treatments. A lot of the research was not done on people that looked like them. If All of Us can get to a point of providing precision medicine, clinicians will have the tools for delivering the right medication for patients, while reducing giving them medicine and treatments that do not work.
The Milwaukee Times: How do you think having members of the D-9 sororities and fraternities come together to spread the word about health, wellness and All of Us will help individuals and the community?
Anita Sparks, Ed.D., Delta Sigma Theta Sorority, Inc.: D-9 involvement is key because we serve the very communities All of Us is trying to reach. We can then become ambassadors for the program and advocates for the people we serve. Delta Sigma Theta Sorority, Inc. Incorporates five components that guide our work as a national and international sorority. Two of those are Social Action and Physical and Mental Health. Social Action supports advocacy for the communities we serve. The Physical and Mental Health component would most definitely support the work of All of Us and the importance of participation to ensure precise medicine for people of color.
Diane Milner, Alpha Kappa Alpha Sorority, Inc.: Each one of the D-9 organizations has a health component where they are concerned about the health of our entire culture, so being able to link up with the D-9 and then usher in the information to the network that they have access to and having the D-9 get behind the All of Us Campaign is important. It may not affect all of us currently, but it will impact those children who come behind us. Why not do it? We are the decision makes. We are the carriers. We may not be the benefactors, but we can leave that in our blood line so that we impact their lives later.
Lenora Brown, Delta Sigma Theta Sorority, Inc.: The more people you get on board to share this message, the more people will be informed. You look at the Divine Nine and you see that public service is in their missions. What is a better way to serve the community than to help them do something about their health? So, by spreading the concept of All of Us and all the benefits, then we are helping our community, if they were to take advantage of it.
Ramona Dicks-Williams, Alpha Kappa Alpha Sorority, Inc.: The D-9 has always led the way in bringing issues for our people to the forefront. Alpha Kappa Alpha established the Mississippi Health Project in the 1930s to address disparities in health and inequities in access to health care that are still pervasive for rural Mississippi and underserved communities across the country and further exacerbated by the impact of the global pandemic. We must continue to be a voice for our people and role models. AKA continues to be involved with health issues and other disparities faced by our people as part of being service to all mankind, and the other D-9 do the same. All of Us fits right into the mission of the D-9 and is another great opportunity to serve. AKA is a national partner of the All of Us program and so should also be a partner at the local level.
The Milwaukee Times: In fact, all D-9 organizations are national partners of the All of Us Research Program. Thank you all for your service and your organizations’ commitments.
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/. You can also learn more about All of Us nationally at https://www.joinallofus.org/.
