P044 Enabling skin research participation of under-represented ethnic minority populations: a codesigned inclusion toolkit
Authors: Shern Ping Choy, Maneeha Naveed, Jasmine Prasad, Koyinsola Quadry, Lucy Moorhead, Catherine Smith, Satveer K Mahil
Journal: British Journal of Dermatology (2024)

Abstract Inclusive, generalizable clinical research is vital to inform high-quality, evidence-based patient care. Yet, ethnic minority populations with high burdens of disease are often under-­represented in research, increasing health disparities already magnified by the COVID-19 pandemic. Efforts to address ethnic inequality in research participation include guidance from the National Institute for Health and Care Research (NIHR) and the US Food and Drug Administration (FDA). As these resources are not tailored to people with skin diseases, we aim to develop a skin-research-specific inclusion toolkit. We used a four-phase approach: (i) focus group discussions to identify barriers and enablers to participation of people from ethnic minority groups in skin research, (ii) a narrative literature review (involving searches of PubMed, Embase, Scopus and Google Scholar) to evaluate barriers and enablers of participation in medical research, (iii) development of a skin research inclusion toolkit, and (iv) dissemination of findings. Two focus group discussions (phase 1) involving six individuals with a skin disease from ethnic minority groups generated four themes. Enablers to participation included a positive value model (e.g. positive beliefs about the research value) and inclusive recruitment strategies (e.g. strong patient–recruiter relationships). Barriers included mistrust in research (e.g. lack of transparency on use of personal data) and social stigma. Our narrative literature review findings (phase 2) reinforced the four focus group themes. Social stigma may accentuate potential feelings of shame or embarrassment of a visible skin condition in people from ethnic minority groups. Mistrust in research is accentuated by a lack of information or understanding about research processes. To establish a positive value model, our narrative literature review findings recommend considering distinct motivators across ethnic groups. Hence, inclusive recruitment strategies should be codeveloped with populations of interest and culturally competent research teams to build lasting partnerships. Phases 1–2 informed the development of a skin research inclusion toolkit (phase 3). The toolkit recommends that researchers should (i) formulate an inclusion plan during study design (e.g. consider differences in the pathophysiology and epidemiology of the skin disease of interest across ethnic groups), (ii) consider study enrolment strategies (e.g. skin of colour education to dermatology healthcare professionals and patients to address disease-associated stigma and codevelop study materials including translations) and (iii) build study retention strategies (e.g. reimbursement for time and travel, timely feedback of findings to participants). In phase 4, the research findings were disseminated to focus group participants. In conclusion, we present a codesigned skin research inclusion toolkit, with recommendations for improving ethnic diversity in skin research cohorts to enable the generation of more representative findings. Future research will incorporate the real-world experiences of research teams and participants utilizing our bespoke toolkit.