A case study of using community-based consensus methods to facilitate shared decision-making among a spinal cord injury network.

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.

Tracking activity-based therapy for people living with spinal cord injury or disease: insights gained through focus group interviews with key stakeholders.

PURPOSE: The development of a tool to track participation in activity-based therapy (ABT) for people with spinal cord injury or disease (SCI/D) was identified as a priority of the Canadian ABT Community of Practice. The objective of this study was to understand multi-stakeholder perspectives on tracking ABT participation across the continuum of care. MATERIALS AND METHODS: Forty-eight individuals from six stakeholder groups (persons living with SCI/D; hospital therapists; community trainers; administrators; researchers; and funders, advocates and policy experts) were recruited to participate in focus group interviews. Participants were asked open-ended questions concerning the importance of and parameters around tracking ABT. Transcripts were analyzed using conventional content analysis. RESULTS: Themes reflected the Who, What, Where, When, Why and How of tracking ABT. Participants described the importance of involving hospital therapists, community trainers and individuals with SCI/D in tracking ABT to capture both subjective and objective parameters across the continuum of care and injury trajectory. Digital tracking tools were favoured, although paper-based versions were regarded as a necessity in some circumstances. CONCLUSIONS: Findings highlighted the importance of tracking ABT participation for individuals with SCI/D. The information may guide the development of ABT practice guidelines and support the implementation of ABT in Canada.

Tracking the details of activity-based therapy (ABT) sessions and programs across the continuum of care and injury trajectory may provide important information to support the development of ABT practice guidelines and implementation strategies.Tracking objective and subjective parameters are needed to provide a comprehensive description of an ABT session and program.Clinicians and individuals with spinal cord injury or disease (SCI/D) should both be able to track ABT to accommodate all settings and types of data.Digital tracking tools, such as an app, may provide an accessible, versatile and efficient way of tracking ABT.

Reducing endocrine metabolic disease risk in adults with chronic spinal cord injury: strategic activities conducted by the Ontario-Quebec RIISC team.

PURPOSE: The Rehabilitation Interventions for Individuals with a Spinal Cord Injury in the Community (RIISC) team aimed to develop and evaluate innovative rehabilitation interventions to identify endocrine metabolic disease (EMD) risk, intending to reduce the frequency and severity of EMD related morbidity and mortality among adults living with chronic spinal cord injury or disease (SCI/D). MATERIALS AND METHODS: An interprovincial team from Ontario and Quebec reviewed available EMD literature and evidence syntheses and completed an inventory of health services, policies and practices in SCI/D care. The review outcomes were combined with expert opinion to create an EMD risk model to inform health service transformation. RESULTS: EMD risk and mortality are highly prevalent among adults with chronic SCI/D. In stark contrast, few rehabilitation interventions target EMD outcomes. The modelled solution proposes: 1) abandoning single-disease paradigms and examining a holistic perspective of the individual's EMD risk, and 2) developing and disseminating practice-based research approaches in outpatient community settings. CONCLUSIONS: RIISC model adoption could accelerate EMD care optimization, and ultimately inform the design of large-scale longitudinal pragmatic trials likely to improve health outcomes. Linking the RIISC team activities to economic evaluations and policy deliverables will strengthen the relevance and impact among policymakers, health care providers and patients.

Living with a spinal cord injury or disease (SCI/D) increases endocrine metabolic disease (EMD) risk.EMD-related outcomes include fracture; type II diabetes; and cardiovascular disease (myocardial infarction, sudden cardiac death and stroke), directly contributing to higher morbidity and mortality.Single-disease paradigms are not the ideal strategy to address multimorbidity contexts experienced in SCI/D.Practice-based research could be an alternative/adjunct to randomized control trials at generating evidence on current and emerging rehabilitation approaches.

IKT Guiding Principles: demonstration of diffusion and dissemination in partnership.

INTRODUCTION: Integrated knowledge translation (IKT) is a partnered approach to research that aims to ensure research findings are applied in practice and policy. IKT can be used during diffusion and dissemination of research findings. However, there is a lack of understanding how an IKT approach can support the diffusion and dissemination of research findings. In this study, we documented and described the processes and outcomes of an IKT approach to diffusing and disseminating the findings of consensus recommendations for conducting spinal cord injury research. METHODS: Communication of the IKT Guiding Principles in two phases: a diffusion phase during the first 102 days from the manuscript's publication, followed by a 1147 day active dissemination phase. A record of all inputs was kept and all activities were tracked by monitoring partnership communication, a partnership tracking survey, a project curriculum vitae, and team emails. Awareness outcomes were tracked through Google Analytics and a citation-forward search. Awareness includes the website accesses, the number of downloads, and the number of citations in the 29 month period following publication. RESULTS: In the diffusion period, the recommendations were viewed 60 times from 4 different countries, and 4 new downloads. In the dissemination period, the recommendations were viewed 1109 times from 39 different countries, 386 new downloads, and 54 citations. Overall, during dissemination there was a 17.5% increase in new visitors to the website a month and a 95.5% increase in downloads compared to diffusion. CONCLUSION: This project provides an overview of an IKT approach to diffusion and dissemination. Overall, IKT may be helpful for increasing awareness of research findings faster; however, more research is needed to understand best practices and the the impact of an IKT approach on the diffusion and dissemination versus a non-partnered approach.

Often, research findings do not get to the people, groups, and/or institutions who could benefit from the findings. Two ways to help move research into practice more efficiently are to: (1) work in partnership with people who may benefit most from the research findings, and (2) share and communicate the findings of research beyond scientists. However, little is known about how to work in partnership while sharing the results of a research study. Therefore, this project demonstrates how a research partnership can work while promoting the results of their research project. Overall, working in partnership while sharing research findings may further help to ensure the research results are shared with those who could benefit from those findings.

Providing Insights into the Challenges of Implementing Activity-Based Therapy in Canada: A Comparative Analysis Using Focus Group Interviews with Key Interest Groups.

Background: Activity-based therapy (ABT) has emerged as a therapeutic approach that may promote neurorecovery and reduce secondary complications in people living with spinal cord injury or disease (SCI/D). In spite of the numerous health benefits, adoption of ABT into practice has been limited across the Canadian care continuum. Objectives: This study aimed to understand the challenges of implementing ABT in Canada for people living with SCI/D through the perspectives of key interest groups. Methods: Researchers, hospital therapists, community trainers, administrators, persons living with SCI/D, and advocates, funders, and policy experts who had knowledge of and/or experience with ABT participated in focus group interviews to share their perspectives on the barriers to ABT practice. Interviews were analyzed using conventional content analysis followed by a comparative analysis across groups. Results: The 48 participants identified six key challenges: (1) challenge of gaps in knowledge/training, (2) challenge of standardizing ABT, (3) challenge of determining the optimal timing of ABT, (4) challenge of defining, characterizing, and achieving high dosage and intensity, (5) challenge of funding ABT, and (6) challenge of measuring participation and performance in ABT. A comparative analysis found some challenges were emphasized by certain groups, such as the cost of ABT for persons with SCI/D, lack of education and training in ABT for therapists and trainers, minimal evidence to develop guidelines for researchers and advocates, and funding ABT programs for administrators. Conclusion: Participants highlighted several challenges that limit ABT practice. Strategies to address these challenges will support successful implementation of ABT in Canada.

Researchers' and Research Users' Experiences With and Reasons for Working Together in Spinal Cord Injury Research Partnerships: A Qualitative Study.

BACKGROUND: Research partnership approaches are becoming popular within spinal cord injury (SCI) health research system, providing opportunities to explore experiences of and learn from SCI research partnership champions. This study aimed to explore and describe SCI researchers' and research users' (RU') experiences with and reasons for conducting and/or disseminating (health) research in partnership in order to gain more insight into potentially ways to build capacity for and foster change to support research partnerships within a health research system. METHODS: Underpinned by a pragmatic perspective, ten semi-structured timeline interviews were conducted with researchers and RU who have experiences with SCI research partnerships. Interviews focused on experiences in participants' lives that have led them to become a person who conducts and/or disseminates research in partnership. Data were analysed using narrative thematic analysis. RESULTS: We identified three threads from participants' stories: (1) seeing and valuing different perspectives, (2) inspirational role models, and (3) relational and personal aspect of research partnerships. We identified sub-threads related to experiences that participants draw on how they came to be a person who engage in (health) research partnerships, and sub-threads related to participants' reasons for engaging in research partnerships. While most sub-threads were identified from both researchers' and RU' perspectives (eg, partnership successes and failures), some were unique for researchers (morally the right thing to do) or RU (advocating). CONCLUSION: Using a narrative and pragmatic approach, this study provided a new understanding of SCI researchers' and RU' partnership experiences over time. We found that participants' research partnership experiences and motivations align with components of leadership theories. The findings from this study may be used to inform strategies and policy programs to build capacity for conducting and disseminating (health) research in partnership, within and beyond SCI research.

Integrated Knowledge Translation Guiding Principles for Conducting and Disseminating Spinal Cord Injury Research in Partnership.

OBJECTIVE: To address a gap between spinal cord injury (SCI) research and practice by rigorously and systematically co-developing integrated knowledge translation (IKT) guiding principles for conducting and disseminating SCI research in partnership with research users. DESIGN: The process was guided by the internationally accepted The Appraisal of Guidelines for REsearch & Evaluation (AGREE) II Instrument for evaluating the development of clinical practice guidelines. SETTING: North American SCI research system (ie, SCI researchers, research users, funders). PARTICIPANTS: The multidisciplinary expert panel (n=17) and end users (n=35) included individuals from a North American partnership of SCI researchers, research users, and funders who have expertise in research partnerships. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Clarity, usefulness, and appropriateness of the principles. RESULTS: Data regarding 125 principles of partnered research were systematically collected from 4 sources (review of reviews, scoping review, interviews, Delphi consensus exercise). A multidisciplinary expert panel held a 2-day meeting to establish consensus, select guiding principles, and draft the guidance. The panel reached 100% consensus on the principles and guidance document. The final document includes a preamble, 8 guiding principles, and a glossary. Survey data showed that the principles and guidance document were perceived by potential end users as clear, useful, and appropriate. CONCLUSIONS: The IKT Guiding Principles represent the first rigorously co-developed, consensus-based guidance to support meaningful SCI research partnerships. The principles are a foundational tool with the potential to improve the relevance and impact of SCI research, mitigate tokenism, and advance the science of IKT.

Advancing primary and community care for persons with spinal cord injury: Key findings from a Canadian summit.

Context: Persons with spinal cord injury (SCI) experience significant challenges when they access primary care and community services.Design: A provincial summit was held to direct research, education, and innovation for primary and community care for SCI.Setting: Toronto, Ontario, Canada.Participants: Key stakeholders (N = 95) including persons with SCI and caregivers, clinicians from primary care, rehabilitation, and specialized care, researchers, advocacy groups, and policy makers.Methods: A one-day facilitated meeting that included guest speakers, panel discussions and small group discussions was held to generate potential solutions to current issues related to SCI care and to foster collaborative relationships to advance care for SCI. Perspectives on SCI management were shared by primary care, neurosurgery, rehabilitation, and members of the SCI communityOutcome Measures: Discussions were focused on five domains: knowledge translation and dissemination, application of best practices, communication, research, and patient service accessibility.Results: Summit participants identified issues and prioritized solutions to improve primary and community care including the creation of a network of key stakeholders to enable knowledge creation and dissemination; an online repository of SCI resources, integrated health records, and a clinical network for SCI care; development and implementation of strategies to improve care transitions across sectors; implementation of effective care models and improved access to services; and utilization of empowerment frameworks to support self-management.Conclusions: This summit identified priorities for further collaborative efforts to advance SCI primary and community care and will inform the development of a provincial SCI strategy aimed at improving the system of care for SCI.

Using Network Analysis to Understand Knowledge Mobilization in a Community-based Organization.

BACKGROUND: Knowledge mobilization (KM) has been described as putting research in the hands of research users. Network analysis is an empirical approach that has potential for examining the complex process of knowledge mobilization within community-based organizations (CBOs). Yet, conducting a network analysis in a CBO presents challenges. PURPOSE: The purpose of this paper is to demonstrate the value and feasibility of using network analysis as a method for understanding knowledge mobilization within a CBO by (1) presenting challenges and solutions to conducting a network analysis in a CBO, (2) examining the feasibility of our methodology, and (3) demonstrating the utility of this methodology through an example of a network analysis conducted in a CBO engaging in knowledge mobilization activities. METHOD: The final method used by the partnership team to conduct our network analysis of a CBO is described. RESULTS: An example of network analysis results of a CBO engaging in knowledge mobilization is presented. In total, 81 participants completed the network survey. All of the feasibility benchmarks set by the CBO were met. Results of the network analysis are highlighted and discussed as a means of identifying (1) prominent and influential individuals in the knowledge mobilization process and (2) areas for improvement in future knowledge mobilization initiatives. CONCLUSION: Findings demonstrate that network analysis can be feasibly used to provide a rich description of a CBO engaging in knowledge mobilization activities.

Examining the feasibility and effectiveness of a community-based organization implementing an event-based knowledge mobilization initiative to promote physical activity guidelines for people with spinal cord injury among support personnel.

UNLABELLED: Community-based organizations (CBOs) and support personnel that serve marginalized members of society have the potential to be important partners in knowledge mobilization (KM). A CBO in partnership with researchers developed an event-based KM initiative to disseminate evidence-based physical activity guidelines for people with spinal cord injury. PURPOSE: The purpose of this case study is to demonstrate a) how a CBO can implement a KM initiative and b) the effectiveness of the initiative for disseminating the guidelines to support personnel. METHOD: The KM initiative consisted of 12 events about the new guidelines held within the CBO's regional areas. Evaluation of the events was guided by the RE-AIM (reach, efficacy or effectiveness, adoption, implementation, and maintenance) framework. RESULTS: Adoption of the events was high, with 88% of regions hosting an event. Overall fidelity to the event protocol was high among researchers (100.00% ± .00), peers (65% ± 33.74), and staff (70.00% ± 34.96). The events reached 140 support personnel who attended the events. Significant increases in support personnel's self-efficacy and intentions to promote physical activity to people with spinal cord injury were seen at Time 2 but not maintained at Time 3. CONCLUSIONS: Event-based KM initiatives may be an effective strategy for CBOs to disseminate information to support personnel and ensure that KM initiatives are supported by staff and delivered as intended.

The role of interpersonal communication in the process of knowledge mobilization within a community-based organization: a network analysis.

BACKGROUND: Diffusion of innovations theory has been widely used to explain knowledge mobilization of research findings. This theory posits that individuals who are more interpersonally connected within an organization may be more likely to adopt an innovation (e.g., research evidence) than individuals who are less interconnected. Research examining this tenet of diffusion of innovations theory in the knowledge mobilization literature is limited. The purpose of the present study was to use network analysis to examine the role of interpersonal communication in the adoption and mobilization of the physical activity guidelines for people with spinal cord injury (SCI) among staff in a community-based organization (CBO). METHODS: The study used a cross-sectional, whole-network design. In total, 56 staff completed the network survey. Adoption of the guidelines was assessed using Rogers' innovation-decision process and interpersonal communication was assessed using an online network instrument. RESULTS: The patterns of densities observed within the network were indicative of a core-periphery structure revealing that interpersonal communication was greater within the core than between the core and periphery and within the periphery. Membership in the core, as opposed to membership in the periphery, was associated with greater knowledge of the evidence-based physical activity resources available and engagement in physical activity promotion behaviours (ps < 0.05). Greater in-degree centrality was associated with adoption of evidence-based behaviours (p < 0.05). CONCLUSIONS: Findings suggest that interpersonal communication is associated with knowledge mobilization and highlight how the network structure could be improved for further dissemination efforts. KEYWORDS: diffusion of innovations; network analysis; community-based organization; knowledge mobilization; knowledge translation, interpersonal communication.

Examining the effectiveness of a knowledge mobilization initiative for disseminating the physical activity guidelines for people with spinal cord injury.

BACKGROUND: Ensuring the physical activity (PA) guidelines for people with spinal cord injury (SCI) are effectively disseminated is important for promoting PA. Few studies have investigated knowledge mobilization (KM) initiatives that aim to disseminate PA guidelines. Diffusion research suggests that using interpersonal communication channels may increase the adoption of guidelines. OBJECTIVE: The aim of the present study was to examine the reach and effectiveness of an event-based KM initiative that used interpersonal communication to disseminate the guidelines to people with SCI. The KM initiative consisted of 12 separate events attended by a total of 104 people with SCI (age = 53 ± 18.9 years; 31% female). METHODS: Questionnaires assessing attendees' adoption of the guidelines in accordance with Rogers' innovation-decision process were completed before (Time 1), directly after (Time 2) and 1 month following an event (Time 3). RESULTS: Findings indicate that in total the events reached 5% of SCI Ontario clients. RM-ANOVAs and Related-Samples McNemar Tests indicated that initial adoption of the guidelines was high but in general was not maintained. Specifically, at Time 2, attendees' knowledge of the guidelines, attitudes toward the guidelines, self-efficacy and intentions to meet the guidelines increased from Time 1 (ps < 0.05). At Time 3, the majority of these initial increases were not maintained and change in PA behavior was not observed. However, 67% of attendees tried the recommended exercises. CONCLUSIONS: An event-based KM initiative may be effective for initial dissemination of PA guidelines. Efforts are needed to foster long-term guideline adoption.