Abstract: Aim: To explore the experiences of patients, family members and informal caregivers who have been involved on health care research teams in Canada and ask for their recommendations for meaningful engagement.
Method: Focus groups and interviews with 19 experienced patient research partners in Canada.
Results & Conclusion: Participants identified four important factors to ensure their engagement in research is meaningful: the research environment, expectations, support and value. The authors conclude 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 recognise the value patient research partners bring to health research.
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Categories: journal article researchers relevant to all service users general principles of good practice lessons from direct experience of involvement
Date Entered: 2019/01/21
Date Edited: 2019/01/21