1. Patient Engagement in Research: Considerations in Creating a Registry for Adults with Congenital Heart Disease.
- Author
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Phillippi, Ruth, Leezer, Scott, Messmer, Mindi, Hile, Danielle, and John, Anitha S.
- Abstract
Purpose of Review: Patient engagement is defined as the meaningful involvement and active partnership of patients and key partners throughout the entire research project. This article reviews the importance of developing a patient engagement plan to promote better alignment of research with patients' and clinicians' real-world needs and concerns. Recent Findings: The Congenital Heart Initiative (CHI) launched in 2020 is an entirely web-based longitudinal registry designed in close coordination with the adult congenital heart disease (ACHD) community it is intended to serve. Successful community engagement has resulted in real-world data being collected in large scale in a rare disease population. Summary: Establishing patient engagement plans is critical to conducting patient-centered outcomes research. Continued improvement of community engagement strategies is needed to ensure the entire ACHD population is represented to facilitate future research and improved clinical care. [ABSTRACT FROM AUTHOR]
- Published
- 2024
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