"Still learning and evolving in our approaches": patient and stakeholder engagement among Canadian community-based primary health care researchers.

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.