1 Director, Research and Knowledge Translation, Professional Practice Office, Providence Health Care, Canada.
2 Patient Research Partner, Providence Health Care, Canada.
J Health Serv Res Policy. 2018 Jul;23(3):158-167. doi: 10.1177/1355819618762960. Epub 2018 Mar 4.
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.
目的
越来越强调医疗机构要确保将非专业人士作为研究团队的合作伙伴，让他们有意义地参与其中。我们的目的是探讨在加拿大参与医疗保健研究团队的患者、家属和非正式照顾者的观点，并征求他们对有意义参与的建议。
方法
我们进行了一项定性研究，对加拿大 19 名经验丰富的患者研究伙伴的焦点小组和访谈记录进行了主题分析。
结果
研究环境、期望、支持和价值，这些主题突出了参与者对确保他们参与研究有意义的重要因素的综合观点。
结论
我们的研究结果增加了关于参与医疗保健研究的非专业人士的观点以及研究领导者关于有意义参与的建议的不断发展的证据基础。我们的研究表明，研究领导者应该提供一个受欢迎的研究环境，为研究团队中的患者研究伙伴概述适当的期望，支持患者研究伙伴参与项目，并认识到患者研究伙伴为健康研究带来的价值。
