Building Capacity for Congenital Heart Patient- Centered Outcomes Research in Under-Represented Minorities

ABSTRACT

Background: In congenital heart disease, racial and ethnic disparities impact mortality, especially among Blacks and Hispanics in Texas and surrounding regions, however meaningful engagement in ACHD, especially interventional patient-centered outcomes research (PCOR) and comparative effectiveness research (CER) has been limited by socioeconomic, cultural, and geographic factors. We employed a patient-driven peer-to-peer approach to recruit and engage racial minority ACHD patients and family members with the capacity to act as equal research partners to identify, participate in, develop, lead, and disseminate transcatheter intervention PCOR and CER. Method(s) In addition to the study team, four expert PCORI funded-consultants provided strategies and training on stakeholder recruitment and engagement for targeting minorities and underserved communities. The following strategies were employed 1) engaging through faithbased organizations like churches, synagogues, and mosques 2) working with Houston Methodist Primary Care Providers (PCP) group to identify ACHD patients 3) recruiting through the project's Online Portal and participants' Video Blogs to appeal to stakeholders 4) using social media for mainstream outreach. Result(s) Eighteen total ACHD collaborative members were successfully recruited. Six ACHD patient advocates were recruited as Steering Committee Members (SCM) of the stakeholder collaborative (STK), however, two SCMs resigned from their positions due to family reasons and time commitments. One member was replaced by previously interviewed candidates and another was promoted from our lay STKs. Other applicants remain involved in a non-decision maker capacity as in-waiting STK members. Social media outreach and our online portal proved to be the most efficient recruitment and engagement strategies. On average, we received three new candidate applications after every social media post. Eleven stakeholders were recruited through social media. One stakeholder was recruited through the PCP network. Two churches promoted our flier in their newsletter but we did not receive any applications. Onsite recruiting from faith-based organizations was not feasible due to the ongoing global health crisis from COVID- 19. Discussion(s) Addressing racial disparities in congenital heart and interventional cardiology is challenging and requires a patient-centered approach to research. Despite the COVID-19 pandemic, we successfully built an 18-member ACHD patient collaborative of underrepresented minorities, employing a peer-to-peer strategy through a multi-faceted approach. Social media was the most successful approach especially in the absence of in-person gatherings, however, despite financial compensation for involvement, attrition due to personal reasons occurred. Current efforts are directed toward training the ACHD patient collaborative in basic research methods to serve as equal partners in patient-centered outcomes and comparative effectiveness research.