COVID-19: An opportunity to engage African Americans and women in research on cardiovascular disease

African Americans (AA) have been disproportionately affected with the COVID-19 disease experiencing 30%-60% of the deaths, while only making up 13% of the US population. Early data suggest that pregnant women and those with cardiovascular disease (CVD) may experience worse outcomes with severe coronavirus infection. There is an urgent need to incorporate AA and female perspectives into the design of research on the CVD complications related to COVID-19. The goal of this project was to incorporate perspectives of AA and female patients in developing research priorities and AN agenda related to COVID-19. Objectives included: (a) develop a strong, research-ready partnership capable of executing PCOR, (b) creation of a research agenda and a set of priorities on racial/sex-specific CVD disparities in COVID-19 which reflects the perspectives of AA's and women; (c) long-term objective is creation of a set of research questions suitable for clinical research using the AHA Registry. The project used principles of active and adult learning within the framework of capacity building to build a strong, patient-centered vision of research needs. Different methods of obtaining patient input were used to identify questions suitable for research using the America Heart Association COVID-19 CVD Quality Improvement Registry: focus groups and town halls to identify concerns and interests vis-à-vis CVD and COVID research; narrative medicine methods collected compelling real-life, COVID-19 health stories; a research advisory council reviewed and prioritized research questions. Outcomes include a replicable method of obtaining patient-oriented input into the creation of a research agenda and a set of research priorities for COVID-19. Outputs include the establishment of a research advisory council and stakeholder training using the PCORI funded, PORTAL program resources; a catalogue of patient generated narratives on COVID-19 experiences in the voice of AAs and women, and a set of research questions suitable for research using the AHA Registry. The project created a research ready stakeholder network, ready to develop a research agenda about COVID-19.