Academic-Community Partnerships may be Key to Disseminating Lupus-Related Information to African American Communities
A recent study demonstrates that a community-based approach to lupus education may help improve lupus awareness and understanding within certain communities of predominately African American individuals, as well as promote productive academic-community dialogues. Popular opinion leaders (POLs) who are community members with large social networks, in underserved, mostly African American neighborhoods of Boston and Chicago were recruited to participate in lupus education training sessions. As a result of the training, community partnerships were strengthened and POLs in Boston and Chicago were able to disseminate important lupus information to over 4,500 individuals in both cities, surrounding areas, and even internationally in Nigeria.
In addition to amplifying outreach and increasing lupus awareness, the interactive and collaborative training sessions also shed light on the particular challenges facing African Americans with lupus. Recurring themes heard during the trainings included the problem of poor patient-provider communication, potential environmental influences on lupus development, ongoing racial and gender discrimination experienced, and the importance of support networks.
POLs also provided insightful feedback after engaging with their community members. Several POLs reported significant gaps in knowledge about the signs, symptoms, and psychosocial effects of lupus, underscoring the need for improved lupus education. Engaging men and youth with lupus, socioeconomic barriers, and disproportionate suffering were also pressing challenges observed by the POLs.
This research was funded by the Office of Minority Health, a federal agency dedicated to improving the health of racial and ethnic minority populations through the development of policies and programs that will help eliminate racial health disparities. Study authors Rosalind Ramsey-Goldman, MD, DrPH and Candace Feldman, MD, ScD are members of the Lupus Foundation of America (LFA)’s Medical-Scientific Advisory Committee, and both are recognized for their outstanding contributions to the lupus field. Dr. Ramsey-Goldman was the 2017 recipient of LFA’s Evelyn V. Hess MD, MACP, MACR award, and Dr. Feldman is being awarded with this year’s LFA’s Mary Betty Stevens, MD, FACP, FACR Young Investigator Prize.
When it comes to resolving the differences in health outcomes among African Americans with lupus, Dr. Feldman shares, “It remains essential for us to better understand why racial/ethnic disparities in both disease burden and adverse outcomes continue to exist and to develop interventions to address them. Strategies must span beyond hospitals and doctor’s offices and include patients and their neighborhoods, and they must address the structural, social and political barriers that still prevent many individuals from achieving good health.”
African Americans are 2-3 times as likely to develop lupus as white individuals. They’re also more likely to struggle with adverse health outcomes. While more research is needed to help solve this problem, the importance of grassroots outreach and community-based support is clear. That’s why LFA’s IMPACT for Lupus model works with local faith communities to improve engagement between healthcare providers and patients and increase awareness of lupus clinical trials. LFA also offers an online community and support forum for people affected by the disease. Learn more about LupusConnect.