ArticleJournal of health services research & policy2018
What constitutes meaningful engagement for patients and families as partners on research teams?
Article in Journal of health services research & policy, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 74 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
74 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Towards conceptualizing patients as partners in health systems: a systematic review and descriptive synthesis.Health research policy and systems · 2023Pooled it
- Embedding Consumer-Led Research in a Comprehensive Cancer Centre Alliance: A Mixed-Methods Evaluation.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Creating shared vision in patient partnered research: a case example of patient engagement from the PAVE project (producing an arthritis value framework with economic evidence: paving the way for rare childhood disease).Research involvement and engagement · 2026Article
- Building meaningful partnerships: engaging and co-developing a patient advisory council to inform the implementation of person-centred quality indicators in Alberta primary care.Research involvement and engagement · 2026Article
- Compensating patient partners on health research teams: a qualitative descriptive study of barriers, facilitators, and implications for equity, diversity, and inclusion in Canadian patient-oriented research.Research involvement and engagement · 2026Article
- How Is Equity-Based Co-Creation Enacted in Health and Social Services? An Evaluation of Four Case Studies.Health expectations : an international journal of public participation in health care and health policy · 2026Article
- Experiences of current practice, priorities and strategies for enabling meaningful consumer and community involvement collaborations in health and medical research in Queensland, Australia.Research involvement and engagement · 2026Article
- Beyond a buzzword: the need for shared language, education, and enhanced reporting of disability inclusive co-design research.Research involvement and engagement · 2026Article
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- A pre-post evaluation of the Family Engagement in Research Course: does it increase perceived knowledge, abilities, and confidence in family engagement in neurodevelopmental disability and child health research?Research involvement and engagement · 2025Article
- "Inclusivity requires an active effort": building an inclusive and diverse space when engaging people with lived and living experience and caregivers in mental health and substance use health research.Research involvement and engagement · 2025Article
- Facilitating consumer partnerships in health research.Journal of translational medicine · 2025Article
- Improving the reporting on health equity in observational research (STROBE-Equity): extension checklist and elaboration.BMJ (Clinical research ed.) · 2025Article
- Seven Actions Towards Advancing Patient Authorship and Collaboration in Peer-Reviewed Publications.The patient · 2025Review
- Improved Mental Health Support for Patients With Self-Harm Injuries in the Emergency Department: Design and Development of a Future Patient Care Pathway.International journal of mental health nursing · 2025Article
- Patient engagement strategies in digital health interventions for cancer survivors: A scoping review.PLOS digital health · 2025Article
- Evaluation of the Patient Innovation Partner Role: Perceived Benefits, Structures, Supports, and Recommendations for Lived Experience Engagement in Healthcare Innovation Teams.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Mobilizing the Power of Lived/Living Experiences to Improve Health Outcomes for all.Health expectations : an international journal of public participation in health care and health policy · 2025Article
- Development, implementation, and scalability of the Family Engagement in Research Course: a novel online course for family partners and researchers in neurodevelopmental disability and child health.Research involvement and engagement · 2024Article
14 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.
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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.