Open Access

ARTICLE

Development and Implementation of a Patient Engagement Network for Advancing Research in Adult Congenital Heart Disease

Naomi Kalume^1,*, Shreya Papneja¹, Jamie L. Jackson², Richard Krasuski³, Anushree Agarwal⁴, Arwa Saidi⁵, David Harrison^6,7, Matthew Lewis⁸, Anita Mathews¹, Scott Leezer⁹, Ken Woodhouse¹⁰, Aliza Marlin¹⁰, Danielle M. Hile¹⁰, Ryan Joy O’Connor¹¹, Ruth Phillippi¹, Thomas Carton¹², Anitha S. John¹

1 Division of Cardiology, Children’s National Hospital, Washington, DC, USA
2 Center for Behavioral Health, Abigail Wexner Research Institute at Nationwide Children’s Hospital, Columbus, OH, USA
3 Duke University Medical Center, Durham, NC, USA
4 University of California San Fransico, San Fransico, CA, USA
5 Congenital Heart Center, University of Florida, Gainesville, FL, USA
6 Adult Congenital Heart Disease Program, Inova Medical Center, Fairfax, VA, USA
7 University of Virginia School of Medicine, Charlottesville, VA, USA
8 Columbia University Medical Center, New York, NY, USA
9 CURA Strategies, Arlington, VA, USA
10 Adult Congenital Heart Association, Philadelphia, PA, USA
11 Harvard T.H. Chan School of Public Health, Boston, MA, USA
12 Louisiana Public Health Institute, New Orleans, LA, USA

* Corresponding Author: Naomi Kalume. Email:

(This article belongs to the Special Issue: Registries in Congenital Heart Disease)

Structural and Congenital Heart Disease 2026, 21(2), 3 https://doi.org/10.32604/schd.2026.081700

Received 07 March 2026; Accepted 09 June 2026; Issue published 11 June 2026

Abstract

Background: Adults with congenital heart disease (ACHD) experience lifelong medical and psychosocial challenges, yet research in this population is limited by incomplete longitudinal data and insufficient incorporation of patient perspectives. Although patient engagement is increasingly recognized as important, structured and sustainable engagement models in ACHD research remain limited. Objectives: The paper aims to describe the development and operational structure of the Congenital Heart Initiative (CHI) Engagement Network and to report outcomes from two annual patient-powered research meetings used to identify and refine ACHD research priorities. Methods: The CHI Engagement Network was established as a multi-stakeholder research infrastructure integrating patients, caregivers, clinicians, researchers, and advocacy organizations. Engagement activities included a Patient and Scientific Advisory Board, structured investigator intake and review processes, and annual patient-powered research meetings. Two network meetings were held in 2023 and 2024, each featuring mixed-stakeholder breakout groups focused on patient-prioritized domains. Qualitative data from the 2023 meeting were analyzed using reflexive thematic analysis. The 2024 meeting employed consensus-based co-design methods to generate actionable research concepts. Results: CHI Network activities contributed to the development of funded sub-projects, manuscripts, patient-facing dissemination products, and ongoing engagement initiatives. Across both network meetings, 105 participants representing patients with CHD, patient advocates, clinicians, researchers, and national stakeholders engaged in structured discussions. Consistent priority domains emerged, including mental health, access to specialized ACHD care, and precision medicine approaches. Patients emphasized personalization, clarity, and peer support; clinicians highlighted feasibility and workflow integration; and researchers prioritized data harmonization and scalability. Post-meeting surveys indicated high acceptability and perceived value. Conclusions: The CHI Engagement Network provides a feasible, replicable model for sustained patient engagement in ACHD research, linking governance, co-design, and priority setting to concrete study development and dissemination. This infrastructure advances patient-centered research and offers a roadmap for other rare disease communities.

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