Patient engagement in health research is now an expectation in many countries, and is actively fostered by funding agencies and charitable organizations [1,2,3,4]. A fundamental question where primary care research and health systems research is concerned is who researchers should seek to engage with. For disease-specific research such as arthritis [5], urinary tract infections [4], cancer or diabetes [6], it makes sense to engage patients with lived experience of the condition in question, and similarly for population-specific research, such as that involving the homeless [7] or adults with intellectual disabilities [8]. However, in primary health care and health systems research it is more difficult to know which patients to engage with, since these domains encompass the entire population. One step towards answering this question is to look at the actual experience of patient partners (PPs) engaged in primary care research projects. The present study explores the experience of five such PPs in Ontario, Canada.
As with research involving patient engagement, there are fewer studies of patient engagement that evaluate its impact in primary health care or health systems research. Some studies that look at these areas do so in the context of a broad range of health topics. For example, Hemphill et al. [9] surveyed 255 PPs across 139 research projects, including health systems projects, funded by the Patient-Centred Outcomes Research Institute (PCORI) in the U.S. to explore their motivations for engaging in research. Other studies that look at patients’ voice in the research process or the representativeness of patients engaged in research tend not to specify the research topic. For example, Maguire and Britten [10] interviewed 31 PPs across a range of health research studies in the UK to explore the concept of representation, but did not specify the topics of the studies. Similarly, Sieck, Hefner and McAlearney [11] surveyed 72 PPs and 81 academic researchers in the UK about their perspectives on patients as research partners, but again did not specify the topics of studies the PPs were involved in.
Patient engagement is well-established in the United Kingdom [12], but is more recent in North America. In the North American context, the term “patient” is usually used with an inclusive sense, comprising patients and family members/caregivers (e.g., Canadian Institutes of Health Research (CIHR) [13]), and sometimes patient advocacy organizations (e.g., Patient-Centered Outcomes Research Institute (PCORI) [14]). The Canadian Institutes of Health Research (CIHR) launched its Strategy for Patient Oriented Research (SPOR) in 2011, envisioning that “patients are active partners in health research that will lead to improved health outcomes and an enhanced health care system” [15]. Consequently, studies of patient engagement in research in Canada are quite recent. One such study evaluated engagement of patients and other stakeholders across 12 CIHR-funded Community-Based Primary Health Care (CBPHC) teams, and found that the experience of the project team in these engagement activities had been positive [16]. However, this study was unable to report separately on PPs’ perceptions of engagement. Another recent study in British Columbia with an explicit primary health care focus recruited 10 PPs from the BC Primary Health Care Research Network Patient Advisory to identify topics for future research, but did not report on the PPs’ experience of the priority setting activities [17]. In general, Canadian studies of patient engagement report predominantly on academic researchers’ experience [16, 18, 19].
The range of activities in which PPs are involved varies, depending on the stage of the research project. A meta-narrative systematic review of 142 papers conducted by PCORI on the spectrum of patient engagement showed that PPs were involved in choosing appropriate topics, improving enrollment rates, interpreting data, disseminating findings, and assisting researchers in securing funding [20]. Another meta-narrative systematic review described practical approaches to engaging patients in research, and concluded that patients could successfully play active roles as consultant (e.g., providing feedback on analysis or decisions), collaborator (e.g., participating in development of approaches to an issue), and partner (e.g., co-leading research and making decisions) [21, 22]. A narrative review of patient engagement literature in health and social care research also elaborated on values that patient partnerships add in terms of effectiveness, quality, reliability, representativeness and the evidence base for best practices in patient engagement in research [23]. Patients’ and caregivers’ motivations for engaging in research partnerships and the benefits they perceive have also been reported on. These include desiring to improve patient’s lives, providing support to healthcare interventions, feeling valued, making a positive difference, being empowered, and gaining new skills and better knowledge of research [6, 9, 24].
While the impact of patient engagement on study outcomes remains to be explored, a systematic review of studies conducted between 1995 and 2012 showed that researchers who engaged patient partners in their work reported gaining a better understanding of and building a better rapport with the community they were studying. However, some patient partners reported uncertainty about the concept of patient engagement in research [25] and feeling poorly prepared and trained to contribute, and others that their views were marginalized. Researchers faced difficulties in incorporating patient involvement due to their lack of ability to perceive PPs’ impact on research [26], or lack of money and time [1]. However, not all studies involving patients as co-researchers in health research result in better research, suggesting that collaborative efforts be given higher priority [27].
Ontario’s Patient Engagement Resource Centre (PERC) was established in 2016 by the INNOVATIONS STRENGTHENING PRIMARY HEALTH CARE THROUGH RESEARCH (INSPIRE-PHC) [28], one of 15 centres of excellence in the province funded under the CIHR’s SPOR initiative. This centre addresses the major health system challenges of equitable access to high quality primary health care (PHC) and better coordination of PHC with health and social care systems. PERC’s mission is to support the authentic engagement of patients in primary care research. PERC is a virtual entity that offers online ready access to resources, creates and delivers educational material, and provides mentorship related to patient engagement [29]. In 2016, INSPIRE-PHC was also funded by the Ontario Health Services Research Fund (HSRF) to undertake a program of research focused on primary care priorities, for which PERC was engaged to support any patient engagement activities related to the studies. Three of the seven INSPIRE-PHC studies engaged patient partners. These were intervention studies aimed at strengthening the linkage between primary health care, health systems and social sectors. PERC’s initial plan was to conduct both formative and summative evaluations annually to help the study teams evaluate the patients’ experience of engagement in research over a period of time. However, due to funding issues, study activities were brought to a halt, with the result that PERC conducted only one evaluation. The aim of this article is thus to report on the findings of the PERC evaluation. Out of 15 centres, INSPIRE-PHC focuses on PHC research, assisting researchers with primary health care-specific research consultation, and patient engagement resources. Hence, this study adds to the literature on the evaluation of patient engagement in PHC research supporting a larger network of interdisciplinary PHC researchers and decision makers.