What constitutes meaningful engagement for patients and families as partners on research teams?

Title

What constitutes meaningful engagement for patients and families as partners on research teams?

Creator

Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C

Publisher

Journal of Health Services Research & Policy

Date

2018

Description

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.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

2023 SE1 - Parent Perspectives

Citation

Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C, “What constitutes meaningful engagement for patients and families as partners on research teams?,” Pediatric Palliative Care Library, accessed May 24, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18589.