Community Engagement in Long Covid Research: Process, Evaluation and Recommendations From the Long COVID and Episodic Disability Study
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View abstract on PubMed
Summary
This summary is machine-generated.This study details a community-engaged approach to Long Covid research, enhancing study relevance and quality. Recommendations are provided for future patient-oriented research in Long Covid and similar conditions.
Area Of Science
- Patient-Oriented Research
- Community Engagement in Health Studies
- Infection-Associated Chronic Conditions
Background
- Patient engagement is crucial in Long Covid research, yet implementation varies across teams.
- This paper describes and evaluates a community-engaged approach within the Long COVID and Episodic Disability Study.
- It offers recommendations for future community-engaged patient-oriented research.
Purpose Of The Study
- To describe the process of a community-engaged Long Covid research study.
- To evaluate the strengths and limitations of the community-engagement approach.
- To provide recommendations for engaging patients in Long Covid research.
Main Methods
- Utilized the 4PI Framework and Patient-Led Research Scorecards for a community-engaged study.
- Evaluated engagement through multistage consultation, including online discussions and a web-based questionnaire.
- Assessed collaboration across domains: patient burden, governance, integration, and organizational readiness.
Main Results
- Ten team members, including five with lived experience, completed the Scorecard, with median scores ranging from +1 to +2.
- Five individuals with lived experience, representing four community organizations, participated in discussions.
- Practices and principles enabling meaningful engagement, alongside strengths and limitations, were identified.
Conclusions
- The community-engaged approach enhanced the quality and relevance of the Long COVID and Episodic Disability Study.
- The study reinforces foundational principles of community-based patient-oriented research.
- Derived recommendations can guide other research teams in conducting similar studies.
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