About
Our project’s background and objectives.
Background
Congenital heart disease is the most common birth defect. Due to revolutionary improvements in surgical repair and medical management, there are more adult congenital heart disease (ACHD) patients than children living with congenital heart disease today. There are nearly two million ACHD patients in the United States, and this population grows by 5 percent annually.
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.
PCOR in this area has been limited in Texas and the South-Central United States by socioeconomic, cultural, ethnic/racial, and geographic factors as well as the fact most ACHD patients are not aware that they need continued care and intervention, a knowledge gap shared by most health care providers in adult medicine and cardiology.
Objectives
We are building a sustainable South-Central ACHD community of stakeholders with the capacity to act as equal research partners to identify, participate in, develop, lead, and disseminate PCOR and CER.
The project leaders held stakeholder meetings to identify potential patient leaders, commit engagement, and develop strategies for a successful program. The following primary objectives are the result of these meetings:
Building a South-Central 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 specifically aims to recruit ACHD patients/families who are of underrepresented ethnic/cultural/racial backgrounds and diverse socioeconomic status. Further, to optimize the likelihood of successful future engagement in PCOR and CER, we will also leverage our existing relationships to recruit non-patient stakeholders such as Purchasers, Payers, Product Makers, Policy Makers, Principal Investigators and Providers.
Training a multi-stakeholder ACHD collaborative in knowledge and competencies to actively engage in ACHD PCOR and CER. By working with established PCORI investigators and implementing PCORI Research Fundamentals Modules, we will train the collaborative in both basic research techniques as well as competencies specific to PCOR and CER in a co-learning format.
Building a stakeholder collaborative infrastructure to ensure sustainable engagement in ACHD PCOR/CER through self-governance, identification of PCOR priorities, regular meeting schedule, and continuous education. As we anticipate that steering committee members will need to rotate out periodically, we are working with the Steering Committee to develop mission/vision and by-laws including membership criteria, period of steering committee service, onboarding of new steering committee members, roles of non-patient stakeholders. In collaboration with DeBakey Education which regularly obtains industry support for our patient-centered ACHD Symposium, we will develop continued funding support for the infrastructure of this program, including maintaining monthly meetings, continued stakeholder engagement and training, and an annual meeting at the ACHD Symposium.
Multi-stakeholder ACHD collaborative centered-around patients and families, involving researchers, payers, providers, pharma/device companies, and advocacy groups.