Increasingly, health researchers are conducting their research in partnership with non-researchers such as patients and caregivers, advocacy groups, clinicians, and policymakers. The idea behind this partnership is to make research more relevant and appropriate. However, so far there is not much evidence about how this partnership or engagement actually affects research. We conducted an online survey of 12 teams in Canada that have engaged patients and other stakeholders in community based health research, partly as a requirement to obtain funding. We found that in many cases, the teams have engaged a wide variety and large number of stakeholders, and have involved them in many different stages of their research. Teams reported that their overall experience of this approach to research has been positive, but some challenges have been encountered along the way. Some teams found that it was difficult to communicate appropriately with all the stakeholders, and to keep them informed when research was going slowly. Other teams had trouble finding government representatives to work with. Several teams noted that engagement is time-consuming, and requires a lot of effort. Nevertheless, all teams reported that they had learned from the experience, and found it valuable. As a result, Canadian health care researchers are better positioned to engage with patients and other stakeholders in the future. Background Patient and other stakeholder engagement in research is increasingly important, but there is limited evidence of its impact. In 2013, the Canadian Institutes of Health Research launched a five-year Community Based Primary Health Care (CBPHC) initiative that funded 12 teams for innovative approaches to primary health care involving engagement with patients, communities, decision-makers, and clinicians across jurisdictions in Canada. The present study examines the extent of engagement by these teams, and the factors that affected it, either as challenges or opportunities. Methods We conducted a cross-sectional web-based survey across the 12 CBPHC Innovation Teams, in which we were also participants. We used a data collection tool developed by the Patient Centered Outcomes Research Institute that included both closed and open-ended questions. Results The quantitative data showed that the CBPHC Innovation teams have engaged with diverse stakeholders at different levels and in different stages of research. Almost all teams surveyed engaged with policymakers, most with clinicians and health system representatives, and more than half with patients, mostly at the level of consultation or collaboration. There were very few instances of stakeholder-led research reported. There was a near universal recognition of the importance of communications processes/tools in facilitating engagement, whereas time was the most commonly identified challenge. In almost all cases, challenges encountered were partially if not fully resolved. The qualitative findings showed that each team’s engagement was contextualized by factors such as the jurisdictions and geographic scope of the project, the number and type of stakeholders engaged and their level of involvement. These intersected with the researchers’ motivations for engagement, to give rise to diverse experiences, but ones that the CBPHC teams assessed positively as an approach to research. Conclusions Over the past five years, primary health care researchers in Canada have been actively engaging with patients and other stakeholders. The wide range, extent and nature of that engagement shows that these researchers have anticipated developments in this approach to research and are thus in a position to support and strengthen future efforts to understand the impact of this engagement on health care outcomes.

中文翻译：

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“仍在学习和发展我们的方法”：加拿大社区初级卫生保健研究人员中患者和利益相关者的参与


健康研究人员越来越多地与非研究人员（例如患者和护理人员、倡导团体、临床医生和政策制定者）​​合作进行研究。这种伙伴关系背后的想法是让研究更加相关和适当。然而，到目前为止，还没有太多证据表明这种伙伴关系或参与实际上如何影响研究。我们对加拿大的 12 个团队进行了在线调查，这些团队让患者和其他利益相关者参与基于社区的健康研究，部分原因是为了获得资金。我们发现，在许多情况下，团队吸引了各种各样、大量的利益相关者，并让他们参与了研究的许多不同阶段。团队报告说，他们对这种研究方法的总体体验是积极的，但在此过程中遇到了一些挑战。一些团队发现，当研究进展缓慢时，很难与所有利益相关者进行适当的沟通并让他们了解情况。其他团队很难找到可以合作的政府代表。一些团队指出，参与非常耗时，并且需要付出大量努力。尽管如此，所有团队都报告说他们从这次经历中吸取了教训，并发现它很有价值。因此，加拿大医疗保健研究人员未来能够更好地与患者和其他利益相关者互动。背景 患者和其他利益相关者参与研究变得越来越重要，但其影响的证据有限。 2013 年，加拿大卫生研究院启动了一项为期五年的基于社区的初级卫生保健 (CBPHC) 计划，该计划资助 12 个团队研究初级卫生保健的创新方法，涉及与各辖区的患者、社区、决策者和临床医生的互动。加拿大。本研究探讨了这些团队的参与程度以及影响其参与的因素，无论是挑战还是机遇。方法 我们对 12 个 CBPHC 创新团队进行了一项基于网络的横断面调查，我们也是其中的参与者。我们使用了由以患者为中心的结果研究所开发的数据收集工具，其中包括封闭式和开放式问题。结果定量数据表明，CBPHC 创新团队在不同层次、不同研究阶段与不同利益相关者进行了接触。几乎所有接受调查的团队都与政策制定者进行了接触，其中大多数与临床医生和卫生系统代表进行了接触，一半以上与患者进行了接触，大部分是在咨询或协作层面上。很少有关于利益相关者主导的研究的报道。人们几乎普遍认识到沟通流程/工具在促进参与方面的重要性，而时间是最常见的挑战。几乎在所有情况下，遇到的挑战即使没有完全解决，也已部分解决。定性研究结果表明，每个团队的参与都取决于项目的管辖范围和地理范围、参与的利益相关者的数量和类型及其参与程度等因素。 这些与研究人员的参与动机相交叉，产生了不同的经历，但 CBPHC 团队将这些经历积极评估为一种研究方法。结论 在过去的五年里，加拿大的初级卫生保健研究人员一直积极与患者和其他利益相关者进行接触。这种参与的广泛范围、程度和性质表明，这些研究人员已经预见到这种研究方法的发展，因此能够支持和加强未来的努力，以了解这种参与对医疗保健结果的影响。