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

ABSTRACT 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.


Introduction
The Canadian Institutes of Health Research defines patient engagement (PE) in research as "meaningful and active collaboration [of patients] in governance, priority setting, conducting research, and knowledge translation." 1 Within this definition, the term "patient" is defined as an "overarching term inclusive of individuals with personal experience of a health issue and informal caregivers, including family and friends." 1 PE is increasingly being recognized as an important component of the health research process to facilitate patient-centered research priorities and improve patient outcomes at both the individual and community level. 1 Existing frameworks, such as the Strategy for Patient-Oriented Research-Patient Engagement Framework by the Canadian Institutes of Health Research, highlight the importance of inclusiveness, support, mutual respect, and co-building as guiding principles of PE. 1 A growing body of literature suggests that successful PE requires authentic partnership, 2,3 effective communication, 4 engagement throughout the research process, 5 and adequate training for both researchers and patient partners. 6 Given the potential benefits (e.g., increased impact of study findings), [7][8][9] challenges (e.g., tokenism), [10][11][12] and practical considerations (e.g., authorship on publications and outputs) 13 of PE, it is important to understand experiences with PE from all stakeholders within the research enterprise, including patient partners, researchers, and research trainees.
In recent years, there has been increasing recognition of the value of PE within the field of pain in Canada (e.g., creation of the Chronic Pain Network, 14 Solutions for Kids in Pain, 15 and Chronic Pain Center of Excellence for Canadian Veterans, 16 which all include PE as a central pillar; engagement of patients within the Canadian Pain Society 17 and Canadian Pain Task Force 18 ). Despite this, the current state of PE among pain research trainees (i.e., undergraduate students, health professions students, graduate students, postdoctoral fellows, residents) has not yet been described in the literature. Describing the current state of PE among pain research trainees, the pain research leaders of tomorrow, will provide foundational knowledge that can be used to better support trainees to carry out PE within their own research.
The purpose of this study was 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.

Research Team
Our research team included patient partners (DL, KE, JG, TL); pain research trainees (KV, PRT, CP, AWT); biomedical, clinical, and translational science researchers (KAB, CTC, NG, JM); and individuals who facilitate PE in research (MH, DPR). The individuals on this team were purposely selected to ensure that the relevant stakeholders were engaged. Patient partners played a critical role throughout this research: helping construct study objectives, developing the web-based survey, assisting with recruitment/survey distribution, contributing to data analysis, providing feedback on and involvement in the writing of this article, and participating in knowledge mobilization activities.

Study Design
We implemented a cross-sectional, web-based survey in English and French. 19 Ethics approval was granted by the Queen's University Health Sciences and Affiliated Teaching Hospitals Research Ethics Board in Kingston, Ontario, Canada (HSREB No. 6030467). All participants provided informed consent to participate in this study via their response to the first question of the web-based survey.

Survey Development
We developed a web-based survey based on our study objectives in Qualtrics, Provo, UT. We chose to include a combination of open-and closed-ended questions to enhance ease of survey completion. Two members of the research team (KV, DPR) led the survey creation. Closed-ended survey response options (e.g., questions related to perceived barriers and facilitators) were constructed based on the research team's own lived experiences implementing PE. Other research team members, including patient partners, reviewed the survey and provided suggestions that were incorporated to improve the content, structure, and clarity of questions.
After we created an English version, we translated our survey to French. Two bilingual members of the research team (CP, AWT) led the survey translation. In alignment with best practices, we first translated our survey from English to French, followed by a translation back to English to ensure consistency with the original English version. 20 Before launching our survey, three members of the research team (KV, DL, AWT) conducted cognitive interviews of our survey with two pain research trainees (one with the English version and one with the French version). Cognitive interviewing helps to improve survey design by having an informed individual (i.e., a pain research trainee) think out loud while completing a survey in front of the designer. 21 As a result of the cognitive interviews, we revised some of the questions to improve clarity and/or flow. The final survey included 20 questions. See Supplemental Files 1 and 2 for English and French versions of the survey, respectively.

Sample
We used a convenience sampling technique to recruit participants to complete our survey. 22 Individuals could participate in our research if they were (1) able to complete a web-based survey in English or French, (2) a current trainee (i.e., undergraduate student, health professions student, graduate student, postdoctoral fellow, or resident) at a Canadian academic institution, and (3) engaged in research on a topic related to the field of pain.

Recruitment
Potential participants were invited to complete our survey using a multipronged recruitment approach, including e-mails through relevant pain research Listservs as well as social media posts from painrelated organizations in Canada (e.g., Chronic Pain Network, PainBC). Individual members of the research team also posted recruitment flyers to their personal social media accounts. Participants were invited to complete the survey from September to November 2020.

Data Analysis
We analyzed responses using descriptive statistics (19 closed-ended questions) and content analytic techniques (one open-ended question). 13 Two members of the research team (KV, DPR) led the qualitative content analysis of responses to the open-ended question. 23 The inductive content analysis followed procedures described by Elo and Kyngäs, including preparation, organizing, and reporting of the data. 23

Results
We received a total of 128 survey responses. Thirteen survey responses were excluded because respondents did not complete our survey beyond the demographic questions. We included the completed 115 survey responses (105 English and 10 French) in our final analysis.

Perspectives about and Experiences with PE in Research
Respondents reported perspectives about and experiences with PE in research (see Table 2). The overwhelming majority of respondents (103/115; 89.6%) indicated that PE in pain research is "very" or "extremely" important. Although most respondents acknowledged the importance of PE in pain research, a minority of respondents (23/111; 20.7%) indicated that they "often" or "always" implement PE within their own research as the primary researcher. The most common ways in which respondents described implementing PE in pain research as the primary researcher included involving a patient to advise on or assist with participant recruitment or with materials for participants (48/107; 44.6%), involving a patient in the planning stage of research (25/107; 23.4%), and involving a patient in data collection or analysis (18/107; 16.8%).

Perceived Barriers and Facilitators to Implementation of PE in Research
Barriers and facilitators to PE were also identified by respondents (see Table 3). The three most highly endorsed barriers included being unsure how to practically implement PE (41/105; 39.0%), a lack of funding to reimburse a patient partner or provide them with compensation for participation (36/105; 34.3%), and not knowing how to

Recommendations to Improve the Implementation of PE in Research
Respondents (n = 63) provided recommendations to improve the implementation of PE among pain research trainees. From our inductive content analysis, we constructed four categories to describe respondents' recommendations, including (1) improve availability and accessibility of training opportunities and resources on PE in research, (2) provide more funding opportunities that support and/or require PE in research, (3) create systems to support trainees to find patient partners, and (4) ensure that supervisors, departments, and institutions support and encourage PE in research. See Table 4 for categories, category descriptions, and representative quotations.

Discussion
To our knowledge, this is the first study to survey pain research trainees across Canada to describe their perspectives about and experiences with PE, to identify perceived barriers and facilitators, and to describe recommendations to improve its implementation. The results provide foundational knowledge on the state of PE among pain research trainees in Canada and have potential implications to inform future training opportunities and other enabling initiatives to support the successful implementation of PE among this group of up-and-coming researchers. Though the focus of this work was on trainees within the pain research community, findings may be transferable to trainees in other research disciplines. The overwhelming majority of respondents reported that PE is "very" or "extremely" important in pain research, suggesting that pain research trainees in Canada perceive the value of PE. Increasing recognition of the importance of PE in health research, and specifically within the field of pain in Canada, 14-18 may explain why respondents had overall positive views toward PE. Furthermore, given the fact that most respondents indicated that they conducted clinical pain research, it is possible that this cohort of pain research trainees is more familiar with PE than those conducting other types of pain research, such as basic science. Although respondents had positive views, only a small minority indicated that they "often" or "always" implement PE in projects where they are the primary researcher (e.g., their thesis or dissertation research). This is an important finding and suggests that there are opportunities to move beyond raising awareness and support the actual implementation of PE among pain research trainees. Furthermore, we found that a minority of respondents indicated feeling "very" or "extremely" knowledgeable or confident about implementing PE in research, despite the majority indicating that they had received formal training on the topic as part of their academic program. This indicates that there are opportunities to improve the quality and depth of training provided in this context. Our results suggest that training opportunities, such as those within and outside of academic programs, should focus on theoretical and practical knowledge acquisition and confidence building to support successful implementation of PE in research. Future work, such as initiatives conducted by the Strategy for Patient-Oriented Research National Training Entity, 24 a national platform supported by the Canadian Institutes of Health Research with the goal of advancing patient-oriented research, could also explore the development of competencies and best practices for training on PE that are specifically tailored to meet the needs of research trainees, including those conducting pain research.
The most commonly endorsed barriers when implementing PE in research among respondents were being unsure how to practically implement PE, lack of funding to reimburse/compensate patient partners, and not knowing how to find patient partners. The most common facilitators endorsed by respondents included seeing the value of PE, support from their supervisor, and knowledge of how to practically implement PE. Our findings align with previous research by Heckert and colleagues that explored perceived challenges to the successful implementation of PE, including the importance of infrastructure and supports, such as funding support to appropriately compensate patient partners for their expertise and contributions. 25 Because the most common barrier to implementing PE among our respondents was being unsure how to practically implement PE, this suggests that training and mentorship opportunities should specifically focus on practical and Table 4. Categories, category descriptions, and supporting quotations related to recommendations to improve the implementation of PE in research.

Category
Category description Supporting quotations Improve availability and accessibility of training opportunities and resources on PE in research Respondents described a need for improved availability and accessibility of training opportunities on PE in research for trainees both within and outside of formal academic programs. Many respondents described a desire for training to focus on hands-on and practical learning. Respondents expressed a desire for easy-tofollow resources on how to effectively conduct PE as a trainee. Some respondents also acknowledged that many resources do already exist but could be better combined and found in one accessible virtual location.
"More formal training available, including step-by-step examples of how to engage patients." "Formal education on practical aspects of how to engage patients in research would be beneficial at the beginning of an academic experience (e.g., start of graduate program), so that trainees can build this into their proposal from the onset." "Develop webinars freely available to all [trainees and patients] about patient engagement in pain research. Live events online could promote networking between trainees and patients interested in patient engagement in pain research." "Lots of resources are available (papers, webinars, patient partner groups, etc.); some trainees might not be aware of these resources. So a collection of these resources in an accessible/visible place may help." Provide more funding opportunities that support and/ or require PE in research Respondents described a desire for improving funding opportunities to support and/or require PE in research.
Respondents expressed a desire for improving opportunities for funding agencies and institutions/ departments to support compensation for patient partners' contributions in research. Some respondents also emphasized that funding agencies should prioritize PE as a requirement among trainee scholarship applications (e.g., Tri-Council agencies). "Have the institution and departments explicitly encourage their faculty to implement patient engagement in their research and involve their trainees in this experience." "Provide more education to supervisors in all types of research (e.g., basic science) in how to involve PE in their research/student's research and also how to support students who want to implement PE in their research." "More education is need[ed] at the institutional level to prioritize patient engagement." "If patient engagement and patient-led research is made to be the standard among supervisors, trainees will inevitably learn and engage in those practices." real-world application. Online resources do already exist on how to practically implement PE in research, such as resources created by the Chronic Pain Network 26 and provincial Strategy for Patient-Oriented Research Support Units across Canada (e.g., Ontario Strategy for Patient-Oriented Research Support Unit). 27 As such, it may be important to focus efforts on more widely advertising and disseminating these resources. However, given the limitations of passive knowledge translation strategies (e.g., readings and didactic education), 28 innovative and engaging training models (e.g., mentorship programs between trainees and PE experts) could also be developed and evaluated as a strategy to improve trainees' confidence in practically carrying out PE. Finally, because respondents reported that supervisors are an important facilitator of PE, future efforts should ensure that researchers are equipped with the knowledge, skills, and confidence to appropriately support pain research trainees to carry out PE. Respondents provided diverse recommendations to improve the implementation of PE among trainees conducting pain research in Canada. Recommendations related to improving the availability and accessibility of training, creating more funding opportunities to compensate patient partners, implementing systems to support trainees to find patient partners, and ensuring that supervisors, departments, and institutions provide support and encouragement. These recommendations have important implications to improve the implementation of PE among pain research trainees. For example, the importance of appropriate remuneration for patient partners' skills, time, and expertise as research team members has been widely recognized. 29 To combat compensation barriers, initiatives could be made by pain research specific organizations (e.g., Canadian Pain Society) and other research funders (e.g., Canadian Institutes of Health Research) to create targeted funding competitions that provide trainees with the necessary funds to implement PE within their own research. Additionally, because respondents recommended creating systems to link pain research trainees with patient partners, this highlights an opportunity for relevant organizations and institutions to create initiatives and/or programs to facilitate connections between trainees and patient partners. Given the practical implications of these findings, the recommendations described by survey respondents were used to inform the proposed training and mentoring initiatives within the application to the Canadian Institutes of Health Research for continued funding of the Chronic Pain Network, 14 which will focus on knowledge mobilization and implementation science.

Limitations
This research has potential limitations that need to be considered when interpreting the results. First, because this was a self-report web-based survey, there may be important differences between what respondents reported and what happens within their day-to-day research practice related to PE due to response bias. Second, given our respondent demographics (e.g., majority women conducting clinical pain research), our findings may not be as representative of men and gender-fluid pain research trainees as well as those conducting nonclinical pain research (e.g., basic science). Third, it is possible that those who responded to our survey were more familiar or interested in PE than the typical pain research trainee due to participation bias. Finally, because we limited our survey to pain research trainees across Canada, it is unclear how our findings translate to research trainees in other fields and countries. Given variations in PE norms and practices across fields and geographic jurisdictions, this may be a valuable area of exploration for future research.

Conclusions
Most pain research trainees in Canada perceive that PE in research is important. Despite this, a minority regularly 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 to improve the implementation of PE related to training and resources, funding/compensation for patient partners, creating initiatives that facilitate connections with patient partners, and the importance of support from supervisors, departments, and institutions. These results provide a foundation to understand the current state of PE among pain research trainees in Canada and have implications to inform the development of training opportunities and other enabling initiatives to support the successful implementation of PE among this group of up-and-coming researchers. support its PE efforts at the time this research was conducted. All other authors have no conflicts of interest to report.