Abstract 11896: Building Capacity for a Patient-Centered Research Agenda on Racial and Sex-Specific Cardiovascular Disease Disparities in COVID-19

Abstract

Introduction: African Americans (AA) and women are under-represented in clinical research. Barriers to including AA’s and women as research partners include fear, distrust, and a poor understanding of the research process. COVID-19 could be an opportunity to engage under-represented minorities and women in the research process. Objectives: The goal of this project was to build stakeholder capacity for patient-centered outcomes research (PCOR) and incorporate the perspectives of AA and female patients in developing a research agenda and questions suitable for use in the AHA COVID-19 CVD Quality Improvement Registry (AHA-R). The final research agenda will address the racial/sex-specific CVD disparities in COVID-19. Methods: Using community participatory principles, we established a network of stakeholders (AA patients, women, and researchers). Stakeholders were recruited to participate in focus group (FG) interviews and Town Hall (TH) meetings. All activities were held virtually and recorded. Videos and transcripts were independently reviewed. A Research advisory council (RAC, n=8) was recruited from a subset of stakeholders. RAC members received monthly research training using the PCOR Institute’s resources. RAC members attended a training workshop on narrative medicine principles and were encouraged to share their own experiences. The program sponsored 2 Facebook live events and conducted a survey to acquire and share compelling real-life COVID health stories. The questions generated from the FG, TH and RAC were prioritized by the RAC to create a research agenda and questions suitable for inquiry using AHA-R. Results: The program educated participants on CVD complications related to COVID (TH =51, 84% AA, 78% women), (FG =28, 93% AA, 82% women). There were 53 questions and 7 compelling narratives generated covering 7 topics. Topics included: COVID with and w/o heart disease, research, COVID and pregnancy, stress, racism, and general heart disease. In both groups, feedback on research results was cited as an important factor for participation in research activities. Conclusions: The project developed a research ready stakeholder network, and a prioritized research agenda about CVD disparities in COVID-19 suitable for inquiry using AHA-R.