Background: The Latinx community has experienced excess mortality from the 2019 novel coronavirus (SARS-CoV-2), which causes the disease COVID-19. Despite being the second-largest minority population in the United States, there is limited information on the impact of COVID-19 on the Latinx community. Early data suggest that pregnant women may experience worse outcomes with severe coronavirus infection. Limited data exists on Latinx pregnant women. There is an urgent need to incorporate Latinx and female perspectives into the design of research on the cardiovascular disease (CVD) complications related to COVID-19.
Proposed Solution to the Problem: Building on the project team’s successes engaging with African American (AA) communities, the goal of this project is to incorporate the perspectives of Latinx and female patients into patient-centered outcomes research (PCOR)/comparative clinical effectiveness research (CER) priorities and agendas related to CVD and COVID-19 generated from the team’s recently completed project with AAs. The project will use narrative medicine principles to build a strong, patient-centered narrative about CVD and COVID-19. The project will expand the COVID-19 research advisory council at Temple University in Philadelphia, Pennsylvania to include members of the Latinx community in North Philadelphia (NP).
Objectives: The project team’s objectives include a) developing a strong, research-ready partnership capable of executing PCOR/CER, and b) the creation of a PCOR/CER agenda and a set of priorities on racial/ethnic and sex-specific CVD disparities in COVID-19 which reflects the perspectives of the Latinx community and Latinx women. The long-term objective is creation of a set of research questions suitable for clinical PCOR/CER.
Activities: The project team will: 1) Recruit Latinx male and female patients to participate in focus groups to assess their readiness to engage in PCOR/CER activities, 2) Establish a research advisory council among the stakeholder community, 3) Provide training on PCOR/CER principles to stakeholders, and 4) use narrative medicine principles to collect compelling real-life stories about CVD and COVID-19. Social media will be used to engage a wider audience from stakeholder communities.
Projected 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 the Latinx community and a PCOR/CER agenda and a set of research priorities for COVID-19. Long-term outcomes are a set of research questions suitable for PCOR/CER, some of which will use the AHA Registry as basis.
Short-term outcomes during the project period include the establishment of a research advisory council and comprehensive understanding of the capacity for PCOR/CER efforts within the proposed community of patients, clinicians, public health researchers, and other stakeholders. The research council will develop a PCOR/CER agenda and a set of prioritized research questions to guide the investigation of ethnic and sex-specific disparities in COVID-19 for the Latinx community.
Medium-term outcomes (0-2 years post-project period) include: the development of Latinx community capacity for PCOR/CER, and the development and strengthening of a partnership based on reciprocity, transparency, honesty, and trust. The prioritized research agenda and the set of questions developed earlier in the project will be answered by the Temple COVID-19 working group using the American Heart Association COVID-19 Quality Improvement Registry; subsequent applications will also be developed to fund PCOR/CER projects.
Long-term outcomes (3+ years post-project period) include: the development of a scientific line of inquiry regarding the ethnic and sex-specific disparities in COVID-19 which has the voice of the Latinx community. Future plans include sustaining the research council for future PCOR/CER projects based upon the acquired research agenda.
Patient and Stakeholder Engagement Plan: Stakeholders include Latinx patients, pregnant Latinx women, physicians, Temple Heart and Vascular Institute, Temple University College of Public Health, public health researchers, and Latinx Nurse Practitioner residents. 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, curricula, and activities. The council will assist in the development of plans for engaging Latinx 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, Latinx community