Background Patient- and public-led research signals more than a redistribution of decision-making authority, positioning patients and public as key contributors of scholarly inquiry throughout the research process. Despite the growing awareness of patient- and public-led research endeavors, it is unclear how they are conducted. This scoping review aimed to synthesize how patient- and public-led research is defined and practiced in health research. Methods Our scoping review was guided by the Arksey and O’Malley’s framework (2005) and reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR). A comprehensive search of health research databases and grey literature sources was conducted. Included studies were published in English and described how patients and public held final decision-making authority ( Empower on the International Association for Public Participation, IAP2 continuum) across various research roles and tasks. These standardized roles and tasks were described using the Contributor Role Taxonomy (CRediT). Through iterative discussions and abductive analyses, groupings of studies that shared similar contexts and extended beyond standardized roles and tasks were identified. Results Our search identified 4,723 records, of which 68 articles describing 62 studies met the inclusion criteria. Patient- and public-led research was described using terms including consumer-led, user-led, Indigenous-led; with only 14 (23%) studies offering an explicit definition. Our review identified three contexts in which patient- and public-led research occurred including: how research was carried out (operations), how decisions were made (governance), and how intellectual/experiential contributions from patients and public shaped research trajectories (accountability). Conclusion By shifting the focus from involvement to leadership, our findings provide a foundation for more intentional design, meaningful support, and robust evaluation of patient- and public-led health research.

Background Engaging knowledge users in health research is accelerating in Canada. Our objective was to examine perceptions of partnered health research among individuals involved in funded Canadian partnered health research projects between 2011 and 2019. Methods We invited 2155 recipients of 1153 funded projects to answer a questionnaire probing project characteristics and perceptions of partnered health research. We described and compared perceived effects of involving knowledge users in the project, team cohesion, capability, opportunity and motivation for working in partnership between two categories of respondents: project role [nominated principal investigators (NPIs), other researchers and knowledge users] and gender. Findings We analysed data from 589 respondents (42% NPIs, 40% other researchers and 18% knowledge users; 56% women). Among the perceived effects variables, the proportion of ratings of significant influence of involving knowledge users in the project ranged between 12% and 63%. Cohesion, capability, opportunity and motivation variables ranged between 58% and 97% agreement. There were no significant differences between respondent groups for most variables. NPIs and women rated the overall influence of involving knowledge users as significant more than other respondent groups ( p < 0.001). NPIs also reported higher agreement with feeling sufficiently included in team activities, pressure to engage and partnerships enabling personal goals (all p < 0.001). Conclusions Most respondents held positive perceptions of working in partnership, although ratings of perceived effects indicated limited effects of involving knowledge users in specific research components and on project outcomes. Continued analysis of project outcomes may identify specific contexts and partnership characteristics associated with greater impact.

PurposeTo identify and compare barriers and facilitators to implementing a spinal cord injury (SCI) peer mentorship program at two rehabilitation hospitals.Materials and Methods24 participants from the two rehabilitation hospitals participated - 10 were from China and 14 were from Canada. Semi-structured interviews and focus groups were used to collect data. A cross-case analysis based on the Consolidated Framework for Implementation Research was conducted.ResultsAt an individual level, four common facilitators for both hospitals were: engaging patients with SCI, engaging health professionals, high-level leaders providing financial and instrumental support, and increasing health professionals' motivation to implement the program. Two common barriers were health professionals' low capability and opportunity to implement the program. At an organizational level, one common facilitator was a team culture characterized by openness to innovation and a strong commitment to prioritizing patients' needs. For the Canadian hospital, their partnership and connections with a community-based SCI organization and collaborative work infrastructure were facilitators. For the Chinese hospital, team separation within the local work infrastructure was a barrier.ConclusionsMultiple barriers and facilitators to implementing SCI peer mentorship programs were identified in two culturally distinct contexts. Assessing organizational needs and identifying available resources are key pre-implementation processes for rehabilitation hospitals to implement SCI peer mentorship programs.

Background: Interorganization partnerships are important for the development and knowledge mobilization of national health behavior guidelines. However, little is known about how to improve the dissemination of guidelines across professional networks. Social network analysis may offer unique insight into the social structure of interorganization networks and provide guidance for how network features may be harnessed for effective dissemination. The objectives of this study were to apply social network analysis to (1) analyze the connectedness of organizations and/or subgroups within a national health behavior guideline network and (2) identify organization attributes associated with influential network positions. Methods: Organizations involved in the development and dissemination of the Canadian 24-Hour Movement Guidelines for Adults were invited to complete an online survey to examine the connections among health-promoting organizations in Canada. Data were analyzed using UCINET Version 6. Network maps were generated for the interorganization network and its subgroups, and descriptive frequencies were calculated for demographic characteristics. Associations between organization attributes and centrality measures were calculated using Point-Biserial and Spearman rank correlations. Results: Thirty-four organizations completed the survey and reported 228 organizational ties. Density scores for each dissemination network ranged from 1% to 5%, demonstrating the potential for constrained information sharing (ie, dissemination) between organizations. Five attributes were significantly associated with centrality measures, which included location, sector, size, resource allocation, and previous dissemination of sedentary behavior guidelines. Conclusions: Findings demonstrate the utility of social network analysis for understanding knowledge mobilization across networks and offer guidance for how network features may be leveraged to enhance knowledge mobilization outcomes.

Study design: Guided by the 4-step process outlined in the Consensus-based Standards for the selection of health Measurement INstruments (COSMIN) guideline, multiple methodologies were used: Delphi, literature reviews, ratings with consensus, think-aloud, and test-retest. Objectives: The purpose of this study was to develop and test a spinal cord injury (SCI) peer support evaluation tool that meets the needs of community-based SCI organizations in Canada. Setting: Peer support programs for people with SCI delivered by community-based SCI organizations. Methods: This research was co-constructed with executives and staff from SCI community-based organizations, people with SCI, researchers, and students. Given the multiple steps of this study, sample size and characteristics varied based on each step. Participants included people with SCI who received peer support (mentees) or provided peer support (mentors/supporters) and staff of community-based organizations. Results: In step 1, the 20 most important outcomes for SCI peer support were identified. In step 2 and 3, the 97 items were identified to assess the outcomes and by using rating and multiple consensus methodologies 20 items, one to assess each outcome, were selected. In step 4, content and face validity and test-retest reliability were achieved. The resulting SCI Peer Support Evaluation Tool consists of 20 single-item questions to assess 20 outcomes of SCI peer support. Conclusion: Through a systematic process, the SCI Peer Support Evaluation Tool is now ready to be implemented to assess outcomes of SCI peer support programs delivered by community-based SCI organizations.

Spinal cord injury (SCI) research and policy decisions are rarely made in partnership with people with SCI, making them less relevant, applicable, and used by those whom the decisions are intended to support. Across disciplines, consensus methods have been promoted as a viable solution for supporting shared research and policy-based decision-making. In this paper, we describe a partnered approach between academic researchers and the Ontario SCI Alliance, a non-profit, SCI community mobilization network to co-develop and co-disseminate a community-based consensus exercise. The community-based consensus exercise included two modified Delphi surveys and one in-person retreat. The partnership's goal with this exercise was to facilitate shared decision-making for the development of their upcoming strategic plan. We then interviewed partners and participants from the Delphi and in-person retreat to discuss successes, challenges, and lessons learned from the exercise. Survey 1 was disseminated to over 2,500 members of the Ontario SCI community and received 374 responses (276 coming from people with SCI). Survey 2 had 118 responses, with 87 coming from people with SCI. The retreat had 73 attendees, including people with SCI, family/friends of people with SCI, clinicians, researchers, and SCI community and research organization staff/volunteers. The retreat included a presentation of the survey results, a clinician/researcher panel, and externally-facilitated working groups. All survey responses and retreat materials were synthesized. Using the synthesized feedback, the Ontario SCI Alliance was able to implement several changes for the Ontario SCI community, including higher-quality primary care experiences (reduced wait times, more accessible examining rooms), the development of a wound care strategy with the Ontario government, and an advocacy campaign for public coverage for catheters and urinary care supplies. From the five interviews conducted, five themes were co-constructed regarding the successes, challenges, and lessons learned from the exercise: (1) Inclusion, Diversity, Equity, and Accessibility; (2) Partnership; (3) Design Considerations; (4) Transparency and Clarity in Communication; and (5) Sustainability. Findings from this community case study demonstrate the feasibility of conducting a community-level consensus exercise among an equity-deserving group while providing detailed guidance for how to ensure future research and policy-based decision-making is shared across diverse knowledge users.

PURPOSE:To develop an in-depth understanding of spinal cord injury (SCI) researchers' barriers and facilitators to deciding to use 1) a partnered approach to research and, 2) systematically developed principles for guiding Integrated Knowledge Translation (IKT) in spinal cord injury research (IKT Guiding Principles). METHODS:Qualitative interview study with North American SCI researchers who were interested in using a partnered research approach. The research was conducted using an IKT approach, and interview data were analyzed using reflexive thematic analysis. RESULTS:Thirteen SCI researchers whose research focused on prevention, clinical, rehabilitation, and/or community SCI research were interviewed. Three themes were co-constructed with partners: 1) the principles are necessary but not sufficient for the implementation of a partnered approach to research; 2) relational capacity building is needed; and 3) institutional transformation is needed to value, resource, and support meaningful engagement. CONCLUSIONS:Supporting change that enables SCI researchers to adopt and implement the IKT Guiding Principles will require transformation at the individual (theme 1), relational (theme 2), and institutional levels (theme 3). Findings provide clear, practical, and tangible actions to promote change that can support meaningful engagement in the SCI Research System.

Background Health, fitness and lifestyle professionals can play important roles in promoting physical activity in groups at risk of developing an inactive lifestyle, such as people with spinal cord injury (SCI). Tailored counselling is a promising tool to promote and improve physical activity levels. To support professionals to effectively have a conversation about physical activity with clients with SCI, evidence-based training and resources are needed. This project aimed to 1) co-develop an e-learning course on best practices for SCI physical activity counselling and, 2) examine the effectiveness and usability of this course. Methods Guided by the technology-enhanced learning (TEL) evaluation framework, we used a systematic, multistep approach to co-develop and evaluate an e-learning course. The development process was informed by input and feedback from a diverse group of end-users and experts (n > 160) via online surveys and (think-aloud) interviews. A randomized controlled trial was used to compare learning outcomes (post-knowledge and self-efficacy) between participants who completed the course (intervention group) and the wait-listed control group. Usability, learning experiences, and satisfaction were assessed among all participants. Results Forty-one participants (21 intervention-group; 20 control-group) with various backgrounds (e.g., lifestyle counsellors, physiotherapists, occupational therapists, recreation therapists, fitness trainers) enrolled in the randomized controlled trial. After completing the course, participants in the intervention group showed significantly improved knowledge on the best practices for SCI physical activity counselling and higher self-efficacy for using these best practices in conversations with clients with SCI compared to the control group (p < .001). Participants reported above average usability scores, positive learning experiences, and high levels of satisfaction when completing the course. Conclusion We used a systematic, multi-step, theory-informed approach to co-develop and evaluate an evidence-based e-learning course on SCI physical activity counselling to support professionals to promote physical activity in their daily practices. The overall positive findings demonstrate that the e-learning course is feasible and ready for further implementation in various health and community settings. Implementation of the e-learning course can help professionals improve the physical activity support they provide to their clients, and subsequently increase physical activity participation in people with SCI.

ObjectivesThis project used a systematic and integrated knowledge translation (IKT) approach to co-create theory- and evidence-based best practices for physical activity counseling for adults with spinal cord injury (SCI).MethodsGuided by the IKT Guiding Principles, we meaningfully engaged research users throughout this project. A systematic approach was used. An international, multidisciplinary expert panel (n = 15), including SCI researchers, counselors, and people with SCI, was established. Panel members participated in two online meetings to discuss the best practices by drawing upon new knowledge regarding counselor-client interactions, current evidence, and members' own experiences. We used concepts from key literature on SCI-specific physical activity counseling and health behavior change theories. An external group of experts completed an online survey to test the clarity, usability and appropriateness of the best practices.ResultsThe best practices document includes an introduction, the best practices, things to keep in mind, and a glossary. Best practices focused on how to deliver a conversation and what to discuss during a conversation. Examples include: build rapport, use a client-centred approach following the spirit of motivational interviewing, understand your client's physical activity barriers, and share the SCI physical activity guidelines. External experts (n = 25) rated the best practices on average as clear, useful, and appropriate.ConclusionWe present the first systematically co-developed theory- and evidence-based best practices for SCI physical activity counseling. The implementation of the best practices will be supported by developing training modules. These new best practices can contribute to optimizing SCI physical activity counseling services across settings.

BACKGROUND:Individuals with spinal cord injury (SCI) are dissatisfied with their bowel care, but 71% have not changed their care for at least 5 years. Recently, individuals with SCI expressed a need for knowledge about bowel care options. Healthcare providers (HCP) play a crucial role in supporting bowel care changes OBJECTIVE:We aimed to understand the barriers and facilitators HCP face when discussing changes in bowel care with individuals with SCI. METHODS:Semi-structured interviews were conducted with HCP in partnership with Spinal Cord Injury British Columbia and key community stakeholders. Barriers and facilitators were extracted, deductively coded using the Theoretical Domains Framework, then inductively analysed for themes. RESULTS:Themes highlighted that effective bowel care requires diverse knowledge from a multidisciplinary team. Lack of time to prioritise bowel care and limited healthcare resources were barriers to improving care, which may be augmented through regular bowel care review of both medical and person-centered priorities. Facilitators were accessible and tailored knowledge sharing of care options, complemented by peer support. CONCLUSION:This study highlights the need for targeted interventions that reduce barriers and enhance facilitators to changing care routines, supporting individuals with SCI to change bowel care when needed, and improving quality of life.

Abstract Background and Aims Involving research users in collaborative research approaches may increase the relevance and utility of research findings. Our primary objectives were to (i) identify and describe characteristics of Canadian federally and provincially funded health research projects that included research users and were funded between 2011 and 2019; (ii) explore changes over time; and (iii) compare characteristics between funder required and optional partnerships. Methods Retrospective analysis. Inclusion criteria were projects that included research users. We analyzed publicly available project variables, and coded field and type of research using established classification systems. We summarized data with descriptive statistics and compared variables across three funding year blocks and partnership requirement status. Results We identified 1153 partnered health research projects, representing 137 fields of research and 37 types of research categories. Most projects included a required partnership (80%) and fell into health and social care services research (66%). Project length and funding amount increased from average of 24.8 months and $266 248 CAD in 2011–2013 to 31.6 months and $438 766 CAD in 2017–2019. There were significantly fewer required partnerships in 2017–2019. Conclusions Between 2011 and 2019 Canadian federally and provincially funded partnered health research reflected primarily care services research across many fields. The observed breadth suggests that partnered health research approaches are applicable in many fields of research. Additional work to support partnered research across all types of health research (especially biomedical research) is warranted. The administration of larger grants that are funded for longer time periods may address previously identified concerns among research teams engaging in partnered research but may mean that fewer teams receive funding and risk delaying responding to time-sensitive data needs for users. Our process and findings can be used as a starting point for international comparison.

Background: Research partnership approaches that engage community members within the research team (for example, integrated knowledge translation, community-based participatory research) are typically used to enhance the relevance and usefulness of research findings. However, research outcomes generated through partnered research do not de facto address the priorities of those most affected nor take inclusion or power dynamics into consideration. Consensus methods (for example, Delphi, Deliberative Dialogue) can be used to develop evidence-based solutions by addressing the groups' needs and priorities. Limited research has examined how consensus methods are used by research partnerships.Aims and objectives: Using the PRISMA-ScR checklist as a guide, this scoping review sought to better understand the use of consensus methods in research partnerships.Methods: The search strategy involved four databases (MEDLINE, PsycINFO, EMBASE and CINAHL Plus). A total of 6,654 citations were screened, 404 were advanced for full text review, and 34 studies met eligibility criteria. Data from the 34 studies were extracted and iteratively analysed by three members of our research team.Findings:At least 11 different consensus methods were used with variations of the Delphi being most common. Issues of inclusion and power dynamics were rarely discussed. Overall, there was limited reporting of consensus methods, partnership approaches, and/or power dynamics.Discussion and conclusions: This review extends the literature by providing an overview of consensus methods that have been conducted in research partnerships and how they have been executed. We offer initial considerations for conducting and reporting on the use of consensus methods in research co-production.

PURPOSE:This study aimed to: (1) develop a coding manual to characterize topics discussed and conversation techniques used during peer mentorship conversations between people with spinal cord injury (SCI); (2) assess the reliability of the manual; and (3) apply the manual to characterize conversations.MATERIALS/METHODS:The study was conducted in partnership with three Canadian provincial SCI organizations. Twenty-five phone conversations between SCI peer mentors and mentees were audio-recorded and transcribed verbatim. Ten transcripts were inductively analyzed to develop a coding manual identifying topics and techniques used during the conversations. Inductive technique codes were combined and deductively linked to motivational interviewing and behaviour change techniques. Two coders independently applied the coding manual to all transcripts. Code frequencies were calculated.RESULTS:The coding manual included 14 topics and 31 techniques. The most frequently coded topics were personal information, recreational programs, and chronic health services for mentors and mentees. The most frequently coded techniques were giving personal information, social smoothers, and closed question for mentors; and giving personal information, social smoothers, and sharing perspective for mentees.CONCLUSION:This research provides insights into topics and techniques used during real-world peer mentorship conversations. Findings may be valuable for understanding and improving SCI peer mentorship programs.Implications for RehabilitationSCI peer mentorship conversations address a wide range of rehabilitation topics ranging from acute care to living in the community.Identification of the topics discussed, and techniques used in SCI peer mentorship conversations can help to inform formalized efforts to train and educate acute and community-based rehabilitation professionals.Identifying commonly discussed topics in SCI peer mentorship conversation may help to ensure that peer mentors are equipped with the necessary knowledge and resources, or the development of those resources be prioritized.Developing a method to characterize the topics discussed and techniques used during SCI peer mentorship conversations may aid in designing methods to evaluate how rehabilitation professionals provide support to people with SCI.

Women who experience physical intimate partner violence (IPV) are at high risk of suffering a brain injury (BI) due to head impacts and/or strangulation. Currently, most staff at women's shelters tend not to be aware of IPV-caused BIs. The objective of this study was to address this by developing a new online module within the Concussion Awareness Training Tool (cattonline.com) specifically focused on IPV-caused BI, and measuring its effectiveness in increasing BI awareness and knowledge among staff members at women's shelters. A mixed-methods approach was used which included (i) a survey to measure participant knowledge before and after completing the module; (ii) a 1-on-1 interview 6 months post-training to better understand participants' perceptions of what effect the training had on how they worked with women in their job; and (iii) an evaluation of the content of the module using behavior change techniques. About 81 participants recruited from staff at women's shelters completed the pre/post survey. The average BI knowledge score increased significantly from the pre-survey (M = 8.12/12, SD = 1.05) to the post-survey (M = 9.72/12, SD = 1.62), t(80) = 9.12, P < .001, d = 1.01). Analysis of the interviews with 9 participants highlighted 3 main themes arising from the module: knowledge, mindfulness, and advocacy. All participants felt their knowledge of IPV-caused BIs had increased and said they would recommend the training to their co-workers. Analysis of the module content revealed the most frequent behavior change techniques were related to instructions on how to perform screening and accommodation for IPV-caused BI. The results showed the module was effective in increasing knowledge of IPV-caused BIs amongst women's shelter staff as well as improving how they advocate for, and are mindful of, their clients with BIs. This online training may help improve the care women with IPV-caused BIs receive, and ultimately improve their quality of life.

Background Provided that coaches play a key role in shaping the sport experiences of athletes with a disability, they represent an important point of intervention for enhancing the quality of athletes' participation in disability sport. Despite the importance of their role, few evidence-informed learning resources are available to support the development of disability sport coaches.Purpose The purpose of this study was to produce a novel evidence-informed learning tool for disability sport coaches in entry level and developmental coaching domains. The goal of this tool was to demonstrate and provide information about coach behaviours that facilitate quality experiences for athletes with disabilities.Methodology The format selected for this tool was a creative nonfiction (i.e. an evidence-informed story). Using the Knowledge to Action Framework as a guide, the tool was developed through a four-stage process: (1) identifying and creating primary sources of knowledge through a literature review and original research; (2) synthesizing primary sources of knowledge to select target behaviours and behavioural determinants; (3) crafting the story to demonstrate and provide information about target behaviours and related outcomes; and (4) obtaining feedback from stakeholders (i.e. disability sport athletes, coaches, and administrators) to tailor the knowledge included in the story to the appropriate context.Findings In the first stage, 23 studies focused on quality experiences and/or coaches in disability sport were identified through a review of the literature. The findings of these studies were combined with the results of three original studies conducted by the research team. A synthesis of these findings resulted in the selection of two behavioural determinants (confidence and attitudes) and 13 coach behaviours (aligning with transformational leadership theory) for inclusion in the tool (Stage 2). The story that formed the basis for the tool was crafted in Stage 3, which combined the behaviours and behavioural determinants identified in Stage 2 with a plotline, setting, and characters based on the experience of the first author and stakeholder input. The tool was revised several times to incorporate stakeholder feedback in Stage 4.Implications This paper describes the development of a practical resource for coaches and coach educators in disability sport. As such, we provide a detailed and rigorous procedure for translating evidence into a narrative format with the potential for application in diverse learning contexts. In addition, we reviewed and synthesized evidence that may contribute to enhanced theoretical understandings of coaching effectiveness in disability sport. Taken together, the information presented in this paper offers important theoretical, methodological, and practical implications for researchers, coaches, and coach developers in disability sport.

Objectives: Peer mentorship programs delivered by community-based spinal cord injury (SCI) organizations are multi-faceted and target numerous outcomes.Through previous studies, our community-university partnership team has identified 87 outcomes related to SCI peer mentorship.The purpose of this study was to reach agreement on which outcomes were the most important for SCI peer mentorship programs delivered by community-based organizations among individuals involved in these programs Methods: We designed two sequential Delphi consensus studies.In Study 1, peer mentors, mentees, organizational staff at one of five SCI community-based organizations that partnered with our research team participated.Participants rated the importance of each of the 87 outcomes across three rounds.In Study 2, executive directors/CEOs and frontline peer mentorship staff members of ten community SCI organizations that have a peer mentorship program participated.Participants rated the importance to measure each of the outcomes drawn from Study 1. Results:For Study 1, 50% of participants were primarily identified as mentors, 30% as mentees, and 20% as organizational staff within each round.After Round 1, 73 outcomes were retained based on the consensus criteria.In Round 2, 60 outcomes were kept.After Round 3, 25 outcomes were rated as very important for SCI peer mentorship.For Study 2, four executive directors/CEOs and 15 frontline peer mentorship staff members responded to the questionnaire in Round 1, four of the 25 outcomes were removed based on the consensus criteria.In Round 2, all outcomes met the consensus criteria and were therefore retained.Examples of outcomes included independence, confidence, and dignity.Conclusions: Individuals involved in SCI peer mentorship deemed 21 outcomes as the most important for evaluating SCI peer mentorship programs delivered by community-based organizations.The 21 outcomes will inform the co-development of a SCI peer mentorship evaluation tool by this community-university partnership.

Purpose To explore sexuality after spinal cord injury (SCI) from the perspectives of individuals with SCI and their romantic partners. Methods A sample of 8 Canadian adults with SCI (6 men, 2 women) and their partners participated in this study (N = 16). Semi-structured dyadic and individual interviews were conducted, discussions surrounding sexuality and intimacy were extracted, and a qualitative description of the interview data was performed using thematic analysis. Results Three major themes were identified: the changing definition of sex; emotions; and practical support. Couples' conversations around the changing definition of sex after SCI addressed the taboo topic of sexuality and the importance of communication between couples, peers, and healthcare providers. Emotions included fears of losing intimacy, embarrassment in managing bladder and bowel interference, and acceptance in balancing being a romantic partner and a caregiver. Finally, couples reported challenges accessing practical support including medical interventions and sexual health nurses, but saw value in peer mentorship programs. Conclusion Couples explored a changing definition of sex following SCI that was complicated by the taboo nature of discussing sexuality, experienced a range of emotions throughout the recovery process, and had difficulties navigating the healthcare system for appropriate support.