The state of patient engagement among pain research trainees in Canada: Results of a national web-based survey

Figures & data

Table 1. Respondent characteristics.

Characteristic	Details (%)
Age in years, median (interquartile range) (n = 115)	27 (24, 32)
Gender, n (%) (n = 115)
Woman	90 (78.3)
Man	22 (19.1)
Gender-fluid, nonbinary, and/or Two-Spirit	2 (1.7)
Did not identify with options provided	1 (0.9)
Province/territory of academic institution, n (%) (n = 115)
Alberta	4 (3.5)
British Columbia	2 (1.7)
Manitoba	1 (0.9)
New Brunswick	0 (0.0)
Newfoundland and Labrador	1 (0.9)
Northwest Territories	0 (0.0)
Nova Scotia	7 (6.1)
Nunavut	0 (0.0)
Ontario	60 (52.2)
Prince Edward Island	0 (0.0)
Quebec	24 (20.9)
Saskatchewan	5 (4.3)
Yukon	0 (0.0)
Status as a trainee, n (%) (n = 115)
Undergraduate student, non-health profession	15 (13.0)
Undergraduate student, health profession	3 (2.6)
Master’s student, non-health profession	12 (10.4)
Master’s student, health profession	11 (9.6)
Combined health profession program and Master’s student	2 (1.7)
PhD student/candidate, non-health profession	26 (22.6)
PhD student/candidate, health profession	31 (27.0)
Combined health professions and PhD student/candidate	1 (0.9)
Postdoctoral fellow	11 (9.6)
Other	2 (1.7)
Area of pain research, n (%)* (n = 115)
Clinical science (e.g., pain research that focuses on  individuals with pain, such as lived experience,  assessment, interventions, or measurement)	83 (72.2)
Basic science (e.g., pain research that focuses on cells, proteins, molecules)	52 (45.2)
Translational–basic to clinical science (e.g., pain research that bridges the gap between basic and  clinical research)	17 (14.8)
Translational–clinical science to broader community (e.g., pain research that bridges the gap  between clinical research and the general public/health care providers/policymakers)	12 (10.4)
Mechanism of funding to support trainee salary, n (%)* (n = 115)
Noncompetitive internal funding package from academic institution	39 (33.9)
Provincial graduate scholarship	30 (26.1)
Tri-Council Canada Graduate Scholarship (i.e., Social Sciences and Humanities Research Council,  Natural Sciences and Engineering Research Council, Canadian institutes of Health Research)	29 (25.2)
No funding	25 (21.7)
Competitive internal academic institution award	14 (12.2)
Charity/not-for-profit scholarship	6 (5.2)
Other	11 (9.6)
Own experience with pain (personal or family member) motivated to pursue pain research, n (%) (n = 115)
Yes	57 (49.6)
No	58 (50.4)
Career stage of primary research supervisor, n (%) (n = 115)
Early career (i.e., full-time, independent research appointment for 0–5 years)	28 (24.3)
Mid-career (i.e., full-time, independent research appointment for 5–15 years)	42 (36.5)
Senior career (i.e., full-time, independent research appointment for >15 years)	35 (30.4)
Not sure	9 (7.8)
Primary research supervisor implements PE in research, n (%) (n = 112)
Yes	67 (59.8)
No	23 (20.5)
Not sure	22 (19.6)

*Survey respondents could endorse more than one response option.

Table 2. Perspectives about and experiences with PE in research.

Characteristic	No. (%) of respondents
Importance of PE in pain research (n = 115) Not at all Slightly Moderately Very Extremely	3 (2.6) 0 (0.0) 9 (7.8) 48 (41.7) 55 (47.8)
Training received on PE in research* (n = 115) Formal training as part of academic program (e.g., as part of an academic course) Formal training outside of academic program (e.g., a conference workshop or webinar) Informal training as part of academic program (e.g., mentorship from a peer/supervisor as part of academic program) Informal training outside of academic program (e.g., mentorship from a peer/non-supervisor outside of academic program) No training received	65 (56.5) 42 (36.5) 42 (36.5) 26 (22.6) 28 (24.3)
Knowledge about PE in research (n = 111) Not at all Slightly Moderately Very Extremely	9 (8.1) 35 (31.5) 51 (45.9) 13 (11.7) 3 (2.7)
Confidence in ability to implement PE in research (n = 111) Not at all Slightly Moderately Very Extremely	13 (11.7) 30 (27.0) 48 (43.2) 18 (16.2) 2 (1.8)
Frequency implementing PE in research on projects as the primary researcher (n = 111) Never Rarely Sometimes Often Always	48 (43.2) 17 (15.3) 23 (20.7) 14 (12.6) 9 (8.1)
Frequency implementing PE in research on projects when not the primary researcher (n = 110) Never Rarely Sometimes Often Always	46 (41.8) 21 (19.1) 28 (25.5) 13 (11.8) 2 (1.8)
Implementation of PE in research on projects when the primary researcher* (n = 107) Involving a patient to advise or assist with participant recruitment or with materials for participants Presenting ideas to patients for input/feedback Involving a patient in the planning stage of research Involving a patient in data collection or analysis Involving a patient in knowledge translation Involving a patient on a consultant basis Involving a patient in manuscript writing Involving a patient in grant writing Other (i.e., using own lived experience to inform research broadly) Have not implemented PE in research on a project when the primary researcher	48 (44.6) 31 (34.6) 25 (23.4) 18 (16.8) 17 (15.9) 17 (15.9) 9 (8.4) 5 (4.7) 2 (1.8) 54 (50.5)
Implementation of PE in research on projects when not the primary researcher* (n = 106) Involving a patient to advise or assist with participant recruitment or with materials for participants Presenting ideas to patients for input/feedback Involving a patient in the planning stage of research Involving a patient in data collection or analysis Involving a patient on a consultant basis Involving a patient in knowledge translation Involving a patient in manuscript writing Involving a patient in grant writing Other (i.e., serving as a patient partner based on own lived experience) Have not implemented PE in research on a project when not the primary researcher	34 (32.1) 28 (26.4) 24 (22.6) 20 (18.9) 19 (17.9) 16 (15.1) 13 (12.3) 9 (8.5) 1 (0.9) 51 (48.1)

*Survey respondents could endorse more than one response option.

Table 3. Perceived barriers and facilitators to implementation of PE in research.

Characteristic	No. (%) of respondents
Barriers when implementing PE in research* (n = 105) Unsure how to practically implement PE Lack of funding to reimburse a patient partner or provide them with compensation for participation Don’t know how to find patient partners Lack of confidence to implement PE Lack of support from department Lack of support from institution Lack of support from supervisor Unsure about the value of PE Other (e.g., impacts of COVID-19 pandemic, perception that PE is not relevant to type/topic of research, practical issues related to research ethics) No perceived barriers	41 (39.0) 36 (34.3) 29 (27.6) 28 (26.7) 12 (11.4) 10 (9.5) 9 (8.6) 6 (5.7) 11 (10.5) 18 (17.1)
Facilitators when implementing PE in research* (n = 108) See the value of PE Support from supervisor Knowledge of how to practically implement PE Ability to find patient partners Availability of funding to reimburse a patient partner or provide them with compensation for participation Confidence to implement patient PE Support from institution Support from department No perceived facilitators Other Not applicable—had not implemented PE in research	48 (44.4) 44 (40.1) 26 (24.1) 25 (23.1) 24 (22.2) 19 (17.6) 14 (13.0) 11 (10.2) 7 (6.5) 0 (0) 30 (27.8)

*Survey respondents could endorse more than one response option.

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-to-follow 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).	“Provide funding for trainees to provide honorariums for patient[s] engaged in their research.” “Make [patient engagement] a mandatory component of provincial or federal funding.” “I think there should be opportunities for trainees to seek out funding to support having a patient involved in their research (e.g., from [the Canadian Institutes of Health Research] or within specific departments or graduate schools broadly).” “Funders need to appreciate the role of patients in the field of pain research and encourage trainees to include patients in research.”
Create systems to support trainees to find patient partners	Respondents described a recommendation to create systems to support trainees to find patient partners. Several respondents described the potential benefit of a registry or matching system to connect pain research trainees (and pain researchers more broadly) with patient partners who have lived experience of certain pain conditions to facilitate the process of PE in research.	“It would be helpful to have a platform where researchers and patients can be matched based on interest and pain diagnosis.” “Have a list of places where to get patient partners for trainee research, specifically for Canada and specifically for pain (perhaps even a registry).” “Having a better system to match trainees with interested patient partners. It’s particularly challenging when you are a clinical trainee because of the ethics of approaching/partnering with patients in settings where you also provide care.” “A registry of patients who are willing to engage, and their area/topics of interest would be helpful.”
Ensure that supervisors, departments, and institutions support and encourage PE in research	Respondents reported a need for supervisors, departments, and institutions to support and encourage PE in research. Many respondents described that if their supervisors and departments/institutions themselves implemented and recognized the value of PE, this would make it easier for pain research trainees to implement PE in their research.	“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.”