Prioritizing patient‐centered research in adult congenital heart disease and pregnancy: Findings from Phase 3 of a multiphase national initiative

Background: Despite advancements in care, pregnant individuals with congenital heart disease (CHD) face disproportionately high risks. Objectives: To address these challenges, a national consortium was established to improve maternal outcomes in CHD through multidisciplinary collaboration and patient engagement. Study design: As part of a 2.5-year multi-phase consortium initiative, an in-person research summit followed by three virtual focus groups (Project PHASE 3) was conducted with patients, clinicians, researchers, advocates, and policy representatives. Qualitative data were collected, and reflexive thematic analysis was performed to identify shared priorities. Results: A total of 48 individuals participated in the in-person meeting, including 18 patients (83% female; 11% Black/African American, 17% Asian, 11% Hispanic, 61% White) and 30 clinicians/researchers. An additional 19 patients (100% female; 32% rural/non-urban; 16% Black/African American, 10% Hispanic, 74% White) participated in virtual focus groups. Key priorities identified included improved patient-healthcare provider communication, expanded access to multidisciplinary and adult CHD-specialized care, and greater inclusion of patient voices in reproductive planning and research. Focus groups underscored racial disparities in care, limited CHD education for patients of color, and the need for culturally tailored resources. Participants emphasized the importance of representative research cohorts, integration of genetic counseling, and dissemination of research in accessible, plain-language formats. Conclusions: Findings demonstrate the value of integrating patient expertise and partnership in shaping cardio-obstetric research, care models, and education. Addressing maternal health concerns in CHD research requires both structural changes and community-driven, inclusive research strategies.