The State of Patient Engagement among Pain Research Trainees in Canada: Results of a National Web-Based Survey

BACKGROUND: Patient engagement (PE) in research refers to partnering with people with lived experience (e.g., patients, caregivers, family) as collaborators in the research process. Although PE is increasingly being recognized as an important aspect of health research, the current state of PE among pain research trainees in Canada is unclear. AIMS: The aims of this study were to describe perspectives about and experiences with PE among trainees conducting pain research in Canada, to identify perceived barriers and facilitators, and to describe recommendations to improve its implementation. METHODS: A cross-sectional web-based survey (English and French) was administered to trainees at any level conducting pain research at any Canadian academic institution. RESULTS: A total of 128 responses were received; 115 responses were complete and included in the final analysis. The majority of respondents identified as women (90/115; 78.3%), in graduate school (83/115; 72.2%), and conducting clinical pain research (83/115; 72.2%). Most respondents (103/115; 89.6%) indicated that PE is “very” or “extremely” important. Despite this, only a minority of respondents (23/111; 20.7%) indicated that they “often” or “always” implement PE within their own research. The most common barrier identified was lack of knowledge regarding the practical implementation of PE, and understanding its positive value was the most commonly reported facilitator. Recommendations for improving the implementation of PE were diverse. CONCLUSIONS: Despite viewing PE as important in research, a minority of pain research trainees regularly implement PE. Results highlight perceived barriers and facilitators to PE and provide insight to inform the development of future training and other enabling initiatives.