Evaluating the impacts of patient engagement on a national health research network: results of a case study of the Chronic Pain Network.

BACKGROUND

The Chronic Pain Network (CPN) is a pan-Canadian research network focused on innovating and improving the quality and delivery of pain prevention, assessment, management and research for all Canadians. An important focus of the CPN is to work in collaboration with patient partners. Patient partners, researchers and clinicians work together in all aspects of the research network including on funded research projects and in the governance of the Network. Given this focus, the CPN identified the importance of evaluating their patient engagement work to understand its functioning and impact.

METHODS

The objective of this exploratory evaluation case study was to understand the impacts of patient engagement on the CPN. The CPN worked with an external evaluation team which established an arms-length approach to the evaluation. Interviews were conducted with CPN members, including patient partners, leadership, funded researchers and committee co-chairs, at three discrete time points to trace the evolution of the patient engagement program within the Network. Key Network documents were also collected and reviewed. Data were analyzed following each set of interviews using content analysis guided by the principles of constant comparison and qualitative description. A final round of analysis was conducted using the Engage with Impact Toolkit, an impact measurement framework, to identify impacts of engagement.

RESULTS

Impacts of patient engagement were identified at the individual, network, funded research project and research community levels. These impacts were observed in the following areas: (1) building community; (2) developing knowledge, skills and resources; (3) increasing confidence; (4) influencing priorities and decisions; (5) enabling additional opportunities; (6) promoting culture change; and, (7) coping with experiences of living with chronic pain.

CONCLUSIONS

While not without challenges, the patient engagement efforts of the CPN demonstrates the impact engaging patient partners can have on a national research network and related policy activities. Understanding the approaches to, and impacts of, patient engagement on health research networks can illuminate the value of having patient partners engaged in all aspects of a research network and should serve as encouragement to others who look to take on similar work.

The Chronic Pain Network (CPN) is one of a group of research networks that was funded by the Canadian Institutes of Health Research (CIHR) to support patient-oriented research in chronic diseases. From the beginning of its work, the CPN has included patients as partners. Patient partners are co-chairs of all Network governance committees, funded projects are required to include patient partners in their work and there is a committee dedicated to engagement, the Patient Engagement (PE) committee. The PE Committee determined that it was important to evaluate how the CPN was engaging with patient partners and collaborated with the Public and Patient Engagement Collaborative (PPEC) to evaluate this work. The PPEC, along with members of the PE Committee, identified understanding the impact of patient engagement as an important part of the evaluation. This paper provides a description of the impacts of patient engagement on the people who were involved in the CPN, on the CPN’s work and way of being, and on the broader pain research community. Based on the results from three sets of interviews and review of Network documents, we share impacts identified in seven areas: (1) building community; (2) developing knowledge, skills and resources; (3) increasing confidence; (4) influencing priorities and decisions; (5) enabling additional opportunities; (6) promoting culture change; and, (7) coping with experiences of living with chronic pain. This research shows us the impact that engaging patient partners can have on a national research network, and the areas where greater focus could, perhaps, lead to even greater impacts in future networks.

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