Although Blacks do not have the highest prevalence of Lupus in the US, they experience Blacks disproportionate and more severe morbidity and mortality. Additionally, few Blacks are enrolled in Lupus Clinical Trials, particularly in the Deep South, despite their disproportionate lupus-related morbidity and mortality. The Deep South Health Equity Lupus Project or (DS-HELP) brings together a wide range of partners including: The University of Alabama, Tuskegee University National Center for Bioethics in Healthcare, The Mid-South Lupus Foundation of America, the Georgia Lupus Foundation of America, the American College of Rheumatology and Northwestern University and other academic collaborators and Meharry Medical College National Alumni Association. These partners will use existing evidence based as well as new educational/training approaches over a two year period to achieve an overall goal to increase participation of Black lupus patients in lupus clinical trials, to increase Black primary physician referral of their Black patients into clinical trials and to increase Black health disparity researchers/clinicians to conduct lupus research. This goal is undergirded by the involvement of systemic racism as a barrier to lupus clinical trial participation.
We plan to achieve this goal through the implementation of three Specific aims:
1. Increase participation of Black Deep South Lupus Support group members (N=100, 25 from Alabama, 25 from AR, 25 from TN, 25 from GA) in lupus clinical trials through increasing awareness, importance of lupus clinical trials and knowledge and decreasing barriers in lupus clinical trial recruitment.
2. Increase participation and referral of patients of Black Deep South adult primary care physicians FP, IM, OB/GYN (N=100, 25 from Alabama, 25 from AR, 25 from TN, 25 from GA) into lupus clinical trials through increasing awareness, importance of clinical trials and knowledge and decreasing barriers to lupus clinical trial recruitment.
3. Increase the number of Black researchers/clinicians who will become more involved in lupus research/clinical trials.
We plan to measure success of the DS-HELP project using a mixed methods approach (quantitative and qualitative approaches). The proposed approaches include use of validated measures, pre/post testing to measure increase in lupus clinical trial knowledge, follow up surveys to measure increased participation/referral or intent to participate/refer patients into clinical trials, and focus groups and key informant interviews to assess barriers or improvements in lupus clinical trial participation or lupus clinical research.