UW-Madison’s All of Us Research Project
Ensuring that Medical Research Benefits All
of Us
For the past year, Lucretia Sullivan-Wade has been spearheading
outreach in underrepresented communities to ensure that the
benefits of medical research benefit everyone
Part 1 of 2
By Jonathan Gramling

The historical relationship between medical research and underrepresented communities
has been anything, but good. Either African American or other underrepresented people were
ignored completely when it came to research and solutions to health problems or they
became human guinea pigs. For instance, in the infamous 40-year Tuskegee study, African
American men infected with syphilis were studied, but never told they had syphilis and were
never given penicillin to treat the disease. None of the studies were really about them.

In the last 10-15 years, medical researchers have been trying to change that sordid history
by including African Americans and others in medical research in a positive and healthy way
to ensure that the results of the research directly and positively impact the African American
community.
During President Barack Obama’s administration, a major long-term federal research program was started called All of Us.

“The purpose of this study is that everyone is a part of it,” said Lucretia Sullivan-Wade, a community outreach specialist with All of Us. “Most research studies, as
we know, have not included people of color. This is one study where 50 percent of the participants have to be people who are not typically represented. We’re
talking African Americans, Latinx, LGBTQ, low-income and rural residents. It has to have that representation. This study monitors that you have the representation.
We are doing well. There are more than 10 sites.”

As medicine becomes more sophisticated, it has moved away from “take two aspirin and call me in the morning.” Especially with genetic research, more and more
medicine will become designer drugs where they are developed or prescribed according to the physical make-up of the individual to treat cancer and many other
chronic illnesses. And therefore, it is crucial that all of us are included.

“They are moving toward precision medicine to find out exactly what works for which population and not a medication that came from a study that was composed of
Caucasian males who were 45-years-old and try to give the medication to a person who is a 50-year-old African American female,” Sullivan-Wade emphasized.
“That’s the whole idea behind precision medicine. That’s how it moved that way.”

In order for the research to be accurate and the medical treatment more individualized, the medical community needs a broad and intricate base from which to
conduct research.

“The NIH study is historic,” Sullivan-Wade said. “It’s a longitudinal effort to gather data from one million or more people living in the United States to accelerate
research to improve our health by taking into account individual differences in lifestyle, socio-economic environment and biological and biology factors. The
researchers are trying to come up with an individualized plan for us. What does that plan look like? Well the only way we can find out what that plan looks like is we
have to look at our lifestyles, biology, and the environment in terms of what makes a difference. Precision medicine is an emerging approach to understand
diseases and treatment. That’s how All of Us came about.”

Sullivan-Wade is from the community, having worked at the old Harambee center in the Villager Mall in the 1990s. She is the wife of the pastor at Second Baptist
Church on Madison’s southwest side. She lives in the community and as a community outreach specialist, she is determined to ensure that the community benefits
as much from this study as the medical community. She is working hard to make it a two-way street.

“We know our community is suspicious of research,” Sullivan-Wade said. “Our team’s approach is we don’t come in with an immediate ask. It’s about relationship
building. Once you build a relationship, then there is a trust factor. We are expected to have a certain number of people to join the study. Once I join the study, the
important thing is what do we do to retain people. Once I join the study, there are other benefits that I can gain from this. Once you join, you go in about every 90
days and fill out surveys that are de-identified. The beauty for us is our goal is built on authentic community relationships. My pet peeve is we don’t just go in and
ask you for anything. I need to get to know you. I need to get to understand and be sensitive to what your needs are. If your need at that particular time is just the
financial piece, I want you to know that there is more value in this. This is a long-term relationship. Our team tries to focus on the relationship building, the long-term
benefits for everyone. The relationship is not a one-and-done.”

What’s important to Sullivan-Wade is to develop a what can we get out of it attitude rather than what is in it for me. She is looking for a higher-order motivation for
people being engaged in the project. It’s not about the cash, it’s about the community.

“People are in a movement to eliminate some of the disparities in healthcare,” Sullivan-Wade said. “There is going to be a better understanding of the impact of
environment and lifestyle for our health. It will help increase the knowledge and better address the health disparities that we are seeing. It increases patient
engagement. As a participant, you have a better use and understanding of your own health as a consumer. Through this kind of study, this is what you are going to
gain from being a part of All of Us.”

Sullivan-Wade and the other outreach specialists have spent a lot of time in the community.

“If you want to work with the community, you have to be in the community,” Sullivan-Wade said. “I’ve worked many years in the Madison community and Madison is
my home. I am very protective that is always at the forefront. We have to be a part of that community. When you are doing this kind of work, I am a doer and believe
in giving back. You have to give back to your community. And giving back sometimes is sacrificing your own personal time. It’s not like you are 8-to-5. This is like a
24/7. We’re no first responders. But I consider us being responders to the community. We should be there not just when the community is having an event. We
should be there at others times. We should be visible.”

During the past year, Sullivan-Wade and other community outreach specialists have been visible at just about every community event and festival. And they have
been trying to reach people at the grassroots level.

“We have Community Engagement and Enrollment Sites,” Sullivan-Wade said. “We’re at the Meadowood Health Partnership, the Allied Health Center, the East
Madison Community Center, and the food pantries. We’ve really tried to have engagement and enrichment and have the community learn from us and for us to learn
from the community. The food pantries are nice. They are there for immediate needs. I need food. But when we’re there, we try to make sure they know we are there
about helping with their help and also letting them know that you are meeting a basic need for food. But you are also meeting a basic need with us, your health.
When we are at food pantries, we let people know that their health is a basic need. We are also at Access Community Health Center. That’s my favorite. We’re there
as an enrollment site. The beauty of this is you don’t have to go into the hospital. We go into the community where you can enroll and do the physical part of the
appointment.”

And since it is imbedded in the community, it will benefit the community.

“We try to work with the community and determine what we can leave in the community that will grow the community,” Sullivan-Wade said. “All of Us is going to
grow. All of Us is going to continue. But what can All of Us leave in Madison? I want us to be able to look back and say, ‘Yeah, that was when I did that research
and we saw a need.’ I’m not a top-down kind of person. I’m a bottom-up person. People can speak for themselves. And I try to assess where the community is, what
the community needs are and what will better help the community if they had immediate information about their health? Sometimes we are at different sites doing
tabling. And we try to pay attention to the themes of conversations in recruiting. ‘Maybe this community could benefit by having someone from the university or the
school of medicine or the Community Center for Health Equity. Maybe we can have someone come from that department to share with the community and build
relationships in the community, so that it is a win-win for both, for the community and for our scholars out there so they understand our community.”