ArticleHealth expectations : an international journal of public participation in health care and health policy2024
Establishing Effective Patient Engagement Through a Terms of Reference to Foster Inclusivity and Empowerment in Research: Example From a Healthcare Transition Quality Indicators Project.
Article in Health expectations : an international journal of public participation in health care and health policy, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.
What it found
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Who cites it
3 citing papers in PubMed.
- Frameworks for Action: A Scoping Review of Organisational Patient Engagement Models in Healthcare.The International journal of health planning and management · 2026Article
- Knowledge user perspectives on integrated knowledge translation (iKT) in health interventions research for people with multiple sclerosis: a qualitative descriptive study.Research involvement and engagement · 2025Article
- Article
Corrections and comments
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Authors and funding
19 authors.
Funding
Abstract
introductionPatient engagement in research aims to foster meaningful partnerships, integrating patient experiences into the research process. This paper describes the development of a Terms of Reference (ToR) to support these meaningful partnerships. While engagement improves data collection and empowerment, ineffective engagement can lead to negative outcomes. A well-developed ToR promotes a structured, inclusive, and respectful process.
methodsUsing an integrated knowledge translation (iKT) approach, we established a panel of youth, caregivers, healthcare providers, and healthcare leaders/decision-makers. Through collaborative discussions, we incorporated key elements into the ToR, including values, roles, decision-making processes, and recognition of contributions.
resultsTo promote effective engagement the ToR included sections to encourage open, transparent and vulnerable dialogue, evaluation, and accommodations for disabilities. The ToR draft was reviewed and refined by panel members for clarity. Regular reviews and updates will keep the ToR a living document and adaptable to the evolving engagement process.
conclusionThe implementation of our ToR is designed to foster inclusivity, mutual respect, and accountability, avoiding tokenistic partnership, enriching the experience for patients and researchers alike, and ultimately enhancing research quality.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.