A Conversation with Our National Community Advisory Board Member from Kaiser Permanente Georgia.
The Kaiser Permanente Research Bank (KPRB) values the voices of the communities Kaiser Permanente serves. Because of the important input our communities provide, we created a National Community Advisory Board (NCAB). The NCAB consists of community members from each Kaiser Permanente region: Colorado, Georgia, Hawaii, Mid-Atlantic States, Northern California, Northwest, Southern California, and Washington. Each member offers a diverse perspective on a wide range of issues related to our Research Bank. For example, we’ve received NCAB’s input on recruitment, how to improve our consent form, and other ways we can continue to build trust with people like you who’ve donated to the Research Bank. This newsletter was one of their many suggestions!
Sarah Madrid, Scientific Lead for our Research Bank’s National Community Engagement and Outreach, recently spoke to Chris Parker, who has been a NCAB member for the last 4 years. Chris is the director of Population and Global Health in the Andrew Young School of Policy Studies at Georgia State University. His work focuses on policy and program research, planning and evaluation efforts that link population health and health care. His experience as a health policy maker, an immigrant family doctor, and a prostate cancer survivor made Chris an excellent candidate for the NCAB.
The following is a condensed version of Sarah and Chris’s conversation:
SM: What motivated you to join the NCAB?
CP: I was excited to understand how Georgians might benefit from the diversity of the Research Bank’s collection. Because of my work with the Georgia Cancer Control Consortium and as a policy maker in the Georgia Health Policy Center at Georgia State University, I’m very aware that Georgia has significant gaps in health care, especially for historically marginalized populations, and lower socioeconomic and rural populations. I wanted to see Kaiser Permanente lead and partner with local organizations to better understand and address these issues. It’s very powerful to show how collaborations among researchers using these samples could address our regional disparity issues, and at the same time, encourage more people to participate in the Research Bank. We know people are more likely to volunteer if they see a potential benefit to them, their families, peers, or communities.
On a more personal level, I’m a prostate cancer survivor, my two sisters are breast cancer survivors, and we lost both of our parents to cancer. While the Research Bank isn’t at a place to say “here’s the direct benefit to you,” it’s important to recognize the opportunity to make a difference. It’s important to help learn how science might improve prevention and early detection for specific groups of people we’re connected to.
SM: What are the most important areas for community input in the Research Bank?
CP: I think those areas are what I call the “bookends” of the Research Bank’s evolution from starting with recruitment to the phase we’re currently in, where more research is now occurring using the collected samples. It’s very important that recruitment doesn’t feel coerced, unfair or unjust, or not mindful of community norms. It’s also crucial that community voices are a part of the discussions about how samples are used, and which researchers have access to them.
SM: Chris, why is it important for the KPRB to have a board of community advisors?
CP: With any community work, it’s important to have a group that’s made up of the same people whose lives will be impacted. By including members of the community, we have a voice to help identify any red flags and create solutions. It’s particularly important from the standpoint of the KPRB because of the historical precedence of negative or unethical research, especially for African American or black populations. The NCAB adds another layer of protection to the research process to ensure that element of history never repeats itself.
SM: How have NCAB members’ perspectives been used by the KPRB?
CP: We’ve had a strong voice regarding recruitment methods, providing input on outreach, and in designing some of the programs used for recruitment. As recruitment needs become less urgent, our role will evolve to ensure the processes for accessing and using the samples are equitable and appropriate from the viewpoint of the communities represented in the collection.
SM: Why is diversity in the collection important to you?
CP: There are health conditions that are more common to people in my region that don’t affect other people as much. For example, as a prostate cancer survivor, I know prostate cancer affects many more African American or black men than others. By doing research with samples from traditionally disadvantaged populations across the country, it will also be possible to speak both to regional and national health concerns.