Abstract Introduction Interstitial lung disease (ILD) is an often-progressive lung disease leading to high morbidity and mortality with limited treatment options. Low enrollment of racialized and minoritized individuals in ILD epidemiological studies and clinical trials limits our understanding of treatment efficacy in these patients. A systematic review of 37 randomized controlled trials in ILD found that only 14% of participants were non-White. Black individuals with ILD experience earlier onset of disease, hospitalizations, and death, and are less likely to be treated with disease-modifying treatments or receive a lung transplant as compared to white individuals. We sought to gather stakeholder perspectives on the individual, interpersonal, and institutional barriers and facilitators to recruitment and retention of minority populations in ILD research. Methods We conducted 1:1 semi-structured interviews with patients with ILD from Weill Cornell Medical Center and Brooklyn Methodist Hospital who identified as Black and/or Hispanic, academic ILD clinicians, and research coordinators from the Pulmonary Fibrosis Foundation Clinical Care Network. Topic guides were developed using the Capability, Opportunity, and Motivation behavioral framework (COM-B). Interviews were conducted until thematic saturation was reached. Interviews were recorded and transcribed verbatim. Transcripts were analyzed using qualitative content analysis. Results A total of 11 patients who self-identified as Hispanic (n = 2) or Black (n = 9). A total of 12 research coordinators, and 15 clinicians were interviewed, and of those 13 identified as women and 12 as men. Within the group of research coordinators and clinicians, 2 identified as being Hispanic or Latino in origin, 14 identified as White, 4 as Black or African American, and 4 as Asian. With respect to time involved in ILD research; 1- 5 years (10, 40%), 6 - 10 years (6, 24%), 11 - 15 years (3, 12%), 16 - 20 years (4, 16%), 21 - 25 years (0, 0%), and 25+ years (2, 8%). Five core themes emerged from the data. These include: 1.) Practical and Logistical Considerations, 2.) Trust in the Healthcare System / Relationship, 3.) Effective communication and transparency 4.) Community support and social trends and 5.) Cultivating a sense of hope. (Table 1). Conclusion In this study, we identified unaddressed barriers and facilitators for racialized and minoritized populations’ involvement and participation in research studies. To our knowledge, this is the first study that utilized the COM-B framework to identify core themes from patients, clinicians, and research coordinators that may lead to improved engagement, recruitment, and retention of minority populations in ILD research. This abstract is funded by: COMMUNITY IDC
Whalen et al. (Fri,) studied this question.