Background: Congenital heart disease is the most common birth defect, and today, there are nearly 2 million adult congenital heart disease (ACHD) patients in the United States. Although most ACHD patients continue to require specialized cardiovascular care, less than 10 percent are seen by ACHD providers and are at high risk for lapses in medical care, noncompliance, and late complications despite successful surgical repair in childhood. Meaningful engagement in ACHD patient-centered outcomes research (PCOR) has been limited in Texas and the South Central United States by socioeconomic, cultural, ethnic/racial, and geographic factors as well as the fact that congenital heart research has traditionally been provider-driven and primarily focused on children. Additionally, non-patient stakeholders such as payers, providers, pharma/device companies, and advocacy groups are committed to improving outcomes in ACHD, but lack of knowledge in PCOR and meaningful engagement of patients serves as a critical barrier.
Objectives: The project team proposes to build a sustainable community of ACHD stakeholders in the South Central United States with the capacity to act as equal research partners to identify, participate in, develop, lead, and disseminate PCOR and comparative effectiveness research (CER) through three primary objectives:
- To build a South Central US ACHD multi-stakeholder collaborative via peer-to-peer ACHD patient stakeholder recruitment through a steering committee composed of ACHD patients and family members. The team will specifically aim to recruit ACHD patients/families who are of underrepresented ethnic/cultural/racial backgrounds and diverse socioeconomic status.
- Train multi-stakeholder ACHD collaborative in knowledge and competencies to actively engage in ACHD PCOR and CER using the PCORI Research Fundamentals Modules and PCORI faculty consultants.
- Build stakeholder collaborative infrastructure to ensure sustainable engagement in ACHD PCOR/CER through self-governance, identification of PCOR priorities, regular meeting schedule, and continuous education.
Methods: In the current COVID-19 environment, social media and online meetings will be a critical method for recruiting and engagement, so the foundation of the stakeholder collaborative, the steering committee, will be composed of six ACHD patient leaders and advocates who are already skilled in large-scale social media and online communication. During the recruitment phase, the steering committee will meet monthly to identify and recruit 12 ACHD patient stakeholders, leveraging the team’s online portal, which will serve as a hub for stakeholder engagement. During the research methods training phase, the steering committee, stakeholders, researchers, and non-patient stakeholders (including representatives from industry, insurance, government) will meet monthly to learn from PCORI faculty consultants on tools for engagement as well as the PCORI Research Fundamentals Modules.
To optimize the transparency while empowering the voice of patient stakeholders, quarterly video blog progress reports will be posted publicly along with written summaries. These video reports will be promoted via social media to enhance visibility of the stakeholder collaborative as well as recruit stakeholders-in-waiting. In the final months of the funding period, the steering committee will finalize the infrastructure and governance of the stakeholder collaborative and begin preparing for PCOR topic development and prioritization as evidence of substantive capacity built for this South Central US ACHD stakeholder collaborative.
Project Collaborators: The team will collaborate with Houston Methodist Center for Outcomes Research, Adult Congenital Heart Program, DeBakey Education, and Houston Methodist Primary Care Group. The team worked with members of the Adult Congenital Heart Association, Conquering Congenital Heart Disease, Team Uncle Joe, and Zipper Sisters to develop this proposal. The team looks forward to the development of additional collaborations during the course of this project including other organizations, ACHD providers, and programs.