A Multi-Stakeholder Collaborative Serving the South-Central US

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.

Our approach

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 adult congenital heart disease (ACHD).

Regionally Focused

This collaborative is a diverse group of stakeholders from Texas, Oklahoma, and Louisiana. These stakeholders represent the cultural diversity and underserved adult congenital heart disease (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 patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER). 

About the Award

The Eugene Washington PCORI Engagement Award Program is designed to actively involve more patients, caregivers, healthcare providers, and other healthcare stakeholders in the entire research progression. Initiatives supported by this program are focused on fostering communities that are equipped to participate in patient-centered outcomes research (PCOR) and comparative clinical effectiveness research (CER).

The project leaders are collaborating with the Houston Methodist Center for Outcomes Research, Adult Congenital Heart Program, DeBakey Education, and 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 collaborative project. The team looks forward to developing additional collaborations during this project including other organizations, ACHD providers, and programs.

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).

Project Purpose

  • PCOR

  • CER

  • ACHD

  • Regional

Join Our Project

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.