Patient Engagement in Research: Considerations in Creating a Registry for Adults with Congenital Heart Disease

被引:0
|
作者
Phillippi, Ruth [1 ]
Leezer, Scott [2 ]
Messmer, Mindi [1 ]
Hile, Danielle [3 ]
John, Anitha S. [1 ]
机构
[1] Childrens Natl Hlth Syst, Div Pediat Cardiol, 111 Michigan Ave,3rd Floor, Washington, DC 20010 USA
[2] CURA Strategies, Washington, DC USA
[3] Adult Congenital Heart Assoc, Philadelphia, PA USA
关键词
Patient engagement; Registry; Congenital heart disease; CENTERED OUTCOMES RESEARCH; CLINICAL-RESEARCH; PREVALENCE; CARE;
D O I
10.1007/s11886-023-02013-2
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
Purpose of ReviewPatient 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 FindingsThe 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.SummaryEstablishing 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.
引用
收藏
页码:15 / 21
页数:7
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