Primary Submission Category: Health equity
“I don’t want them to Henrietta Lacks me”: A qualitative study on opportunities to improve research engagement and inclusion among Black adults with lupus
Authors: Rachel Bergmans Johari Summerville Nikki Farahani Bhaavna Yalavarthi Deena Aboul-Hassan Sia Rajgarhia Lillian Xiao Christine Yu Daniel Clauw Michelle Kahlenberg Melissa DeJonckheere
Presenting Author: Rachel Bergmans*
BACKGROUND: Systemic lupus erythematosus (SLE) is disproportionately more common and more severe among Black women, yet they are underrepresented in SLE research. This is a barrier to health equity because pathophysiology and treatment side effects and efficacy can vary by social strata, pre-existing disease burden, and epigenetics.
AIM: We aimed to identify opportunities to improve engagement and inclusion of Black communities within SLE research.
METHODS: Our study uses an interpretive description approach. We conducted semi-structured interviews with Black adults who have SLE and hosted community advisory board (CAB) meetings with a subset of these participants along with other women from Black communities in Michigan. The semi-structured interviews focused on SLE diagnosis, the impact of symptoms on day-to-day life, symptom management, the COIVD pandemic, and research. The CAB meetings covered topics related to navigating healthcare, symptom management, and identifying gaps in research and patient community resources. We analyzed the de-identified transcripts using inductive, thematic analysis to create a preliminary coding scheme. Our theme development focuses on what participant perspectives of research are and how participants make decisions about research participation.
RESULTS: We completed 30 semi-structured interviews (96% female, mean age = 41 years) and 7 CAB meetings (n = 6-8). Thus far, our coding scheme includes 5 categories: (1) Ethical and equitable research; (2) Data privacy and dissemination; (3) Integrating research within existing treatment plans; (4) Research that is responsive to patient priorities; and (5) Altruism.
NEXT STEPS: The next step for this project is to apply our preliminary coding scheme to the semi-structured interviews and develop our main themes. Once we finalize our codebook, we will utilize it within the CAB meeting transcripts so that we can add further detail and examples to our main themes.
CONCLUSIONS: The results of this study highlight the perspectives and reasoning of people with SLE in Black communities concerning research participation. Findings will help identify opportunities to increase inclusion and engagement of communities that have been historically underrepresented within SLE research and treatment development.