Sister Act: The Research Participant Advisory Group’s Dynamic Duo
Jackie Humphries and Luwana Pettus-Oglesby may be sisters, but together they are also a dynamic duo and two cornerstones of the Research Participant Advisory Group (RPAG). Their commitment to community-engaged research is reflected in their many roles and contributions. Both have held leadership positions on the West End Community Research Advisory Board (WE C-RAB) and serve as Community Liaisons for the UC Cancer Center. They also regularly attend community events and actively participate in a wide range of CCTST activities, including Luwana’s completion of one of the CCTST’s community research programs.
Beyond these commitments, Jackie and Luwana have contributed their expertise and lived experiences to research projects at multiple stages. They served as project advisors to UC researcher Melinda Butsch Kovacic, MPH, PhD, for her SEPA grant, We Engage 4 Health. They have also partnered with Holly Jones, PhD, RN, CFNP, RNFA, on her K01-funded B-SWELL project, contributing to multiple aspects of the research process, from co-creating the intervention to supporting its implementation and contributing to manuscript development.
Luwana Pettus-Oglesby
Candid and outgoing, Luwana is the current president of the West End Community Research Advisory Board (WE C-RAB) and a member of the University of Cincinnati Research Participant Advisory Council (UC RPAC). She is passionate about “getting researchers out of the lab and into the community” and believes community members should have a meaningful voice in how research is conducted. Drawing on her own lived experiences and those of the communities she belongs to, Luwana offers thoughtful, practical feedback that helps researchers better connect with the people their work is intended to serve.
One way she makes a difference at WE C-RAB and UC RPAC meetings is by encouraging researchers to communicate in language everyone can understand. As Luwana explains, “If the words are too big, give suggestions to layman words to help others understand what those big words mean. I'm good at suggesting putting words in parentheses. We're educating them at the same time. Using the term ‘nephrologist,’ put in parentheses ‘kidney doctor.’ It helps with memorization of those words.”
Jackie Humphries
Passionate and dedicated to advocating for health and research, Jackie is the current vice president of WE C-RAB and a member of the Cincinnati Children’s Research Participant Advisory Council (CCHMC RPAC). Always thinking of new ways to connect communities with health resources and research, Jackie is affectionately known as the “Health Fair Queen” for her tireless efforts to engage community members in research studies, encourage them to understand their health, get screened, and know their numbers.
Jackie is also committed to rebuilding trust in research and healthcare. She believes that ensuring communities are represented in research is essential to advancing health outcomes and making research more responsive to the people it aims to serve.
“I believe I’m making a difference,” Jackie says. “I’m using my voice; this is what I need to be doing, and I’m grateful that I’m able to do it. I need to be here, and I need to be doing this. This is my calling.”
What do you like most/think is most important about the RPAG does?
Luwana: Sharing health research information is important. The more we participate in research the better the outcome will be in the development of medications.
The fact that the researchers come out and get an opportunity to see and hear from the people upfront. Best to come address us and get the feedback from us.
What I like about it that we are getting the researcher to come to us in the community and we are introducing the community to that side of research. We are hearing directly from researchers and more fully understanding issues of health and health research: What they are doing, why they are doing what they are doing…the whole purpose of what they are doing. And the WE C-RAB gives the researcher insight into a culture they are not part of.
Jackie: These advisory groups help the community learn more about important health issues and research. Especially with more common issues like diabetes and heart disease.
I’m grateful that researchers are out here sharing their research and findings so we can be knowledgeable and get ahead of our health issues. We can learn/know about health information sooner and share that out with others. So, every little bit of information I get, I am always working to share it as much as I can with the community/others.
Like our Children’s RPAC t-shirt says, ”We can’t find the cure without YOU!” That is what we want to help get out. That community is important. And that health research is safe with ways to protect people who participate. I love that we have co-created resources like educational stories like “Research Ready” that helps the community understand so much more about research.
What do you like most about serving on the WE C-RAB?
Luwana: Gaining the additional knowledge that I have gained in addition to being in a position to where I can take what I have learned and share it with my community at large. There is such a large range of discrepancy in that community and looking like them, living where I do, I'm more apt to get across to the individuals in the community.
Jackie: This board has given me life purpose. I am so proud to be able to share all the great information I learned from all the people that come in and speak to us on some great topics that can really make a difference in people’s lives.
About the Research Participant Advisory Group (RPAG). The RPAG, comprised of three advisory groups: CCHMC RPAC, UC RPAC and WE C-RAB, is a resource available to anyone across the Academic Health Center interested in learning the research participant or community perspective and improving how research is conducted at the hospital, university, or out in the community. If you are interested in seeking feedback from one of these groups at one of our meetings, or through electronic survey, contact Julie Wijesooriya, Julie.Wijesooriya@cchmc.org.
