Publication
What constitutes meaningful engagement for patients and families as partners on research teams?
Black A, Strain K, Wallsworth C, Charlton S, Chang W, McNamee K, Hamilton C · Journal of Health Services Research & Policy · 2018
ObjectiveThere 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.MethodsWe conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada.ResultsWe 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.ConclusionsOur 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.
Synced from the TRENDS in Pediatric Palliative Care Zotero library, curated by The Siden Research Team. ICPCN does not host or verify the full text.