What Constitutes Meaningful Engagement for Patients and Families As Partners on Research Teams?

Overview

Journal J Health Serv Res Policy

Specialties Health Services
Public Health

Date 2018 Mar 6

PMID 29504424

Citations 55

Authors

Agnes Black

Kimberly Strain

Christine Wallsworth

Sara-Grey Charlton

Wilma Chang

Kate McNamee

Clayon Hamilton

Affiliations

Soon will be listed here.

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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