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

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Background: African Americans (AA) have been disproportionately affected by the COVID-19 disease, experiencing 30 to 60 percent of the deaths, while only making up 13 percent of the US population. Early data suggest that pregnant women 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 cardiovascular disease (CVD) complications related to COVID-19.

Proposed Solution: The goal of this project is to incorporate perspectives of AA and female patients in developing research priorities and an agenda related to COVID-19. The project will use narrative medicine principles to build a strong patient-centered narrative. These narratives will be used to identify questions suitable for research using the American Heart Association COVID-19 CVD Quality Improvement Registry. The project will establish a COVID-19 research advisory council at Temple University in Philadelphia, Pennsylvania.

Objectives: The project team’s objectives include:

• Developing a strong research-ready partnership capable of executing PCOR
• Creation of a research agenda and a set of priorities on racial/sex-specific CVD disparities in COVID-19 that reflect the perspectives of African Americans and women. The long-term objective is creation of a set of research questions suitable for clinical research using the AHA Registry.

Activities: The project team will:

• Recruit AA and female patients to participate in focus groups to assess their readiness to engage in general research activities
• Establish a research advisory council among the stakeholder community
• Provide training on PCOR principles to stakeholders
• Use narrative medicine principles to collect compelling real-life, COVID-19 health stories. Social media will be used to engage a wider audience from stakeholder communities.

Outcomes and Outputs: Outcomes include the establishment of a research advisory council and stakeholder training using the PCORI-funded PORTAL program resources. The output will be a catalogue of patient-generated narratives on COVID-19 experiences in the voice of African Americans and women, and a research agenda and a set of research priorities for COVID-19. Long-term outcomes are a set of research questions suitable for research using the AHA Registry.

Patient and Stakeholder Engagement Plan:
Stakeholders include patients, clinicians, women, local faith community members, and public health researchers. The council meetings will focus on patients’ experiences living in a COVID-19 world. Additionally, the council will be asked to review and vet the asset and needs assessment plans, as well as the curricula and activities. The council will assist in the development of plans for engaging AA and female patients using social media platforms. The council will meet monthly to provide opportunities for co-learning and to facilitate the development of strong, positive relationships.

Project Collaborators: Academic researchers, faith-based community members, African Americans, and women.