What is it about?
This article discusses the experiences of 19 patient/family volunteers who joined research teams. We share both their experiences (positive and not-so-positive) and their recommendations for how researchers and health care leaders could do a better job of inviting their participation on research teams. All of them said it's important to have patient/family volunteers on research teams in order to make findings more relevant to patients.
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Why is it important?
Many researchers and health care leaders realize the importance of involving patient/family volunteers on their research and improvement projects, but because this practice is relatively new, they need guidance on how to engage successfully, and in ways that are meaningful to the volunteers. We offer concrete recommendations for how to make engagement more successful and meaningful.
Perspectives
This article fills a gap in the published literature, and allows readers to hear directly from the patient/family volunteers on research teams about what is working and what needs to be improved. We hope the experiences of our study participants and their recommendations will encourage researchers and health care leaders to expand their efforts to engage with patient/family volunteers.
Agnes Black
Providence Healthcare
Read the Original
This page is a summary of: What constitutes meaningful engagement for patients and families as partners on research teams?, Journal of Health Services Research & Policy, March 2018, SAGE Publications,
DOI: 10.1177/1355819618762960.
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