We are a collaborative of patients, families, and stakeholders working together to advance patient-centered outcomes research (PCOR) in adult congenital heart disease (ACHD) in the South-Central United States. We believe engaging patients, families, and stakeholders with firsthand experience of conditions can produce more patient-centered, practical, and trustworthy research. Ultimately, this can
lead to greater use of research results by patients and the broader healthcare community, helping people make better-informed healthcare decisions and improving the lives of patients living with ACHD. This collaborative is a diverse group of stakeholders from Texas, Oklahoma, and Louisiana. These stakeholders represent the cultural diversity and underserved ACHD care areas typical in the South-Central US. These stakeholders are building a sustainable community that will have the capacity to act as equal research partners to identify, participate in, develop, lead, and disseminate PCOR and comparative clinical effectiveness research (CER). The project, Building Capacity for PCOR through a South-Central US ACHD Stakeholder Roundtable, was funded through a PCORI Eugene Washington PCORI Engagement Award (19633-HMRI).
