Use of Popular Opinion Leader Models to Disseminate Information About Clinical Trials to Black Individuals With Lupus in Two US Cities.

OBJECTIVE: Clinical trials for systemic lupus erythematosus ("lupus") under enroll Black individuals despite higher disease prevalence, morbidity, and mortality among Black compared to White individuals. To begin to address this disparity, we leveraged community-academic partnerships in 2 US cities (Boston and Chicago) to train popular opinion leaders (POLs) to disseminate information about clinical trials in predominantly Black communities. METHODS: The team of community and academic partners collaboratively developed a 5-module curriculum about clinical trials, barriers, facilitators, and structural racism in research. We enrolled POLs in Boston and Chicago to participate virtually in the curriculum and assessed knowledge gained by comparing pre- and post-test scores. We described the POLs' ability to disseminate information about clinical trials through their communities. RESULTS: We enrolled 19 POLs in Boston and 16 in Chicago; overall, 71% reported a lupus diagnosis, 94% were female, and 80% self-identified as Black or African American. The program was adapted to virtual formats due to the COVID-19 pandemic. POLs demonstrated significant improvement comparing pre/post scores for the conduct of clinical trials and history of racism in clinical research. Fifteen POLs (43%) reported their dissemination of information about clinical trials. Information reached 425 community members in Boston (90% virtually) and 1,887 in Chicago (95% virtually). CONCLUSION: By leveraging community-academic partnerships, we developed and implemented a curriculum to promote familiarity with clinical trials, leading to information dissemination by POLs in predominantly Black communities that are underrepresented in lupus clinical trials. The program successfully transitioned to a virtual model during the COVID-19 pandemic.

Use of an Integrated Care Management Program to Uncover and Address Social Determinants of Health for Individuals With Lupus.

OBJECTIVE: We studied patients with systemic lupus erythematosus (SLE) enrolled in a nurse-led, multihospital, primary care-based integrated care management program (iCMP) for complex patients with chronic conditions to understand whether social determinants of health (SDoH), including food insecurity, housing instability, and financial constraints, were prevalent in this population. METHODS: The academic hospital-based iCMP enrolls the top 2% of medically and psychosocially complex patients identified on the basis of clinical complexity health care use, and primary care provider referral. A nurse conducts needs assessments and coordinates care. We reviewed the electronic medical records of enrolled patients with SLE to identify SDoH needs and corresponding actions taken 1 year prior to iCMP enrollment using physicians' and social workers' notes, and during enrollment using iCMP team members' notes. RESULTS: Among 69 patients with SLE in the iCMP, in the year prior to enrollment, 57% had documentation of one or more SDoH challenges, compared with 94% during enrollment. iCMP nurses discussed and addressed one or more SDoH issues for 81% of the patients; transportation challenges, medication access, mental health care access, and financial insecurity were the most prevalent. Nurses connected 75% of these patients with related resources and support. CONCLUSION: Although SDoH-related issues were not used to identify patients for the iCMP, the vast majority of enrolled medically and psychosocially complex patients with SLE had these needs. The iCMP team uncovered and addressed SDoH-related concerns not documented prior to iCMP participation. Expansion of care management programs like the iCMP would help identify, document, and address these barriers that contribute to disparities in chronic disease care and outcomes.