Background/Purpose: Lupus disproportionately affects diverse racial and ethnic minority populations, yet there is a significant disparity between those affected and those enrolled in clinical trials. The Lupus Research Alliance’s Lupus Clinical Investigators Network (LuCIN), the largest lupus clinical trials network in North America, works to address this gap by facilitating advancements in lupus treatments across more than 50 academic medical center sites. The aim of the present work is to characterize the perspectives, preferences, and unmet needs of LuCIN site representatives to enhance the participation of underrepresented groups in lupus clinical trials.

Methods: Three online Community Feedback Sessions (CFSs) were held with LuCIN site investigators and research staff in January 2024. CFSs were led by a trained facilitator according to discussion guides developed to gather actionable feedback on: challenges and facilitators for recruiting and enrolling racial and ethnic minority patients into lupus clinical trials; effective communication with diverse patients about clinical trials; and strategies and solutions to promote the enrollment of underrepresented patients. The sessions were recorded, and feedback was summarized to explore key takeaways and recommendations to advance equity in lupus clinical trials.

Results: Nine LuCIN investigators and seven research staff participated in the feedback sessions, representing 14 LuCIN sites. Key barriers identified included socioeconomic factors and logistical challenges, such as transportation access, inadequate compensation, visit time, and the cost of missing work. Building long-term relationships with patients and involving trusted messengers (e.g., primary care providers, community health workers) were emphasized as critical solutions to addressing historical and current issues around mistrust in research and medicine. Both investigators and research staff stressed the importance of using culturally appropriate language in communications about clinical trials, including for patients who speak languages other than English. Session participants identified opportunities for ongoing education, patient engagement, and information sharing to improve communication about clinical trials within and between clinical professionals, patients, and communities. Investigators focused on mentorship and innovative communication methods, while research staff emphasized specific training programs and resources for better understanding lupus and addressing community concerns.

Conclusion: Addressing the underrepresentation of diverse populations in lupus clinical trials requires a multifaceted approach. While investigators and research staff shared common concerns and suggestions for advancing equity in lupus clinical trials, each group contributed unique insights and identified unmet needs based on their roles and prior experiences. Engaging and incorporating perspectives from the entire clinical trial research team can help identify comprehensive and actionable strategies to promote equity in lupus clinical trials.

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/bridging-the-gap-enhancing-diversity-in-lupus-clinical-trials-through-investigator-and-research-staff-engagement/