In 2017, Kaiser Permanente Georgia research staff began work to increase the number of people from diverse racial and ethnic backgrounds joining our Research Bank. Increasing diversity is a core goal of the Research Bank so research findings can benefit everyone. Unfortunately, many people are understandably reluctant to participate in health research because of the legacy of the Tuskegee experiment, which “observed the effects” of decades-long syphilis in Black men without offering treatment for this deadly disease.
The 2017 effort showed that in-person recruitment is an effective way to reach Kaiser Permanente Georgia (KPGA) members from different racial and ethnic backgrounds. In-person contacts provided an important opportunity for the KPGA Research Bank team to speak directly with members and have meaningful conversations about the importance of diversity in research. Thanks to these conversations, we decided to conduct a special survey with members who self-identified as Black to better understand reasons people decide or not to participate in research.
Our survey findings reflect the historic hesitancy on the part of Black Americans to participate in health care research. The data from the survey showed that Black KPGA members considered it particularly important to be informed about a research study in person by a known or trusted individual. Additional factors, like trust in Kaiser Permanente and the ability to receive research results, were also mentioned as important when choosing to take part in research.
Our survey results show that Black KPGA members are interested in participating in research to make a difference, despite the very difficult history of health research in the Black community. KP Research Bank scientists and staff will continue to work with participants so that research better reflects and addresses the needs of racially diverse communities.