Abstract
Background
Evidence to guide multiple sclerosis (MS) rehabilitation and symptomatic care has grown, yet suboptimal access to care persists and uptake of evidence-based information is limited in practice. The movement of evidence into routine clinical care is not a spontaneous or linear process. Effective knowledge mobilization strategies may enhance equitable access to evidenced-based comprehensive MS care.
Methods
To guide the development of a MS rehabilitation knowledge mobilization strategy with priorities and action items a Canadian summit was hosted to engage key stakeholders in identifying and discussing current MS rehabilitation and symptomatic care evidence and needs. This multifaceted summit included workshops, breakout groups, presentations, brainstorming, and consensus-building.
Results
Forty-three key stakeholders participated. Varied disciplines, Canadian geographical regions, and content expertise were represented. This included early/mid/late-career researchers, healthcare providers, and people with MS. The summit process identified 18 key need statements. Participants individually rated the identified need statements on feasibility and importance, and the relationships in terms of timeliness and impact were discussed. The three top priorities were identified and focused on for action planning. Developing a best-practice guideline for MS rehabilitation was unanimously identified as the critical first step to improve access to care. Support for healthcare providers and establishing a network to support this knowledge mobilization work were the next two priorities. Priority topic areas for knowledge mobilization were fatigue, mobility, cognition, mood and emotion, and rehabilitation across the MS disease course.
Conclusion
Knowledge mobilization priorities and key topic areas for MS rehabilitation have been identified using a collaborative process. The lessons learned from this summit will inform advocacy efforts for improved access to evidence-based comprehensive care and opportunities to support moving a sustainable MS rehabilitation knowledge mobilization agenda forward. Creating a formalized Canadian MS Rehab Knowledge Mobilization Network was an outcome of the summit, and our network will collaboratively support advancing and re-evaluating this agenda.
Keywords: multiple sclerosis, rehabilitation, knowledge mobilization, co-creation, implementation science
Introduction
The pathophysiology of multiple sclerosis (MS) has an autoimmune inflammatory component and a neurodegenerative component. (Tur et al., 2023) With advances in pharmacological management and early intervention with disease-modifying therapies, the relapsing activity of MS is relatively well managed. (Bar-Or & Li, 2021) However, most people with MS still experience accumulating disability over time; therefore, addressing the neurodegenerative component remains a pressing priority. (Bebo et al., 2022) The role of rehabilitation in comprehensive MS care has never been more important. Rehabilitation can improve functional abilities and symptom management, support engagement in meaningful life tasks, optimize quality of life, reduce disability level, and minimize disease impact for all people with MS at all disability levels and disease stages.
Despite the growing evidence for MS rehabilitation and symptomatic care (Amatya et al., 2019; DeLuca et al., 2020; Duan et al., 2023; Momsen et al., 2022; Quinn & Hynes, 2021), research has identified suboptimal uptake and access to evidence-based care in practice. (Petrin et al., 2021, 2023; Zullig et al., 2024) Enhanced knowledge mobilization efforts accelerate the translation of best evidence from research into clinical practice and facilitate the critical training and recruitment of future health care providers. Implementation science has highlighted the challenge of translating research into improvements in care delivery, quality, and access to services. The movement of evidence into routine clinical care is not a spontaneous, simple, or linear process. (Bauer et al., 2015)
Knowledge mobilization is about enabling use of research findings in applicable settings. (Freebairn et al., 2017) It crosses multiple domains and can encompass synthesis, development of evidence-based toolkits and dissemination material, but also initiatives to support the implementation and evaluation of new knowledge on change in practice. (Esmail et al., 2020) It is informed by implementation science – an evolving science tackling the known gap between research and practice. It may take nearly two decades for evidence to be adopted in practice, with many evidence-based interventions never implemented. (Peters et al., 2013) Implementation science includes the use of strategies to identify, adopt, adapt, and integrate evidence-based interventions and/or policies, to change practice patterns within specific settings. (Leeman et al., 2017) For knowledge mobilization efforts to achieve the largest impact, strategies engaging early collaboration and partnerships among multiple stakeholders are critical. (Seward et al., 2021) In addition, the latest and best evidence must be continually available and understood within the local health care context to bring about change in clinical practice. (Nilsen et al., 2020)
Canada has among the highest prevalence of MS globally, with unique health care system strengths and challenges. Rehabilitation is a critical component of living well with MS. There is a clear need to improve access to evidence informed MS rehabilitation care in Canada. (Marrie et al., 2022; Mate et al., 2023) Canadian led knowledge mobilization initiatives have garnered national and international recognition for supporting best practices in other neurological conditions, including spinal cord injury (CANSCIP, SCIRE), brain injury (ERABI, Brain Injury Guidelines) and stroke (Canadian Stroke Best Practice; Canadian Stroke Network).
Several excellent resources exist from across the globe that address specific topics in MS rehabilitation or general approaches. However, no knowledge mobilization initiative exists for comprehensive MS rehabilitation and symptomatic care. To consider the local Canadian landscape and collaborate with a variety of Canadian stakeholders, a multi-faceted MS rehabilitation knowledge mobilization ‘summit’ was held. The overarching purpose of the summit was to create an MS rehabilitation knowledge mobilization strategy with corresponding action items to enhance equitable access to evidenced-based comprehensive MS care. This paper reports the process and outcomes of the summit.
Methods
A multi-faceted ‘summit’ brought together key stakeholders and leading experts from across Canada to systematically discuss and establish a prioritized knowledge mobilization strategy and corresponding action-items for MS rehabilitation. A summit aims to gather key and diverse stakeholders to share research, exchange ideas, and to participate in critical conversations. Our summit objectives were to: 1) Learn from work that has been done in other neurological conditions (stroke, brain injury, and spinal cord injury); 2) Identify knowledge mobilization components, needs and priorities of participants, and 3) collaboratively action plan for key priorities identified.
The summit was hosted as a partnership project between the MSBEST leadership team and MS Canada. The MSBEST (Multiple Sclerosis Best Evidence-based Strategies and Treatment/Therapies for Rehabilitation) team produces systematic reviews on select MS rehabilitation topics that are freely accessible as comprehensive online modules. MSBEST was created to help accelerate synthesis of research findings. MS Canada provides services to people impacted by MS, advocates for change, and supports MS research. A summit planning committee was formed which included representation from MS Canada, the MSBEST leadership team, health care providers, and people living with MS. The planning of initial summit events and activities were informed by implementation science (e.g., frameworks, techniques, and systematic reviews), successful knowledge mobilization initiatives in other neurological conditions (e.g., brain injury, spinal cord injury, stroke), and some preliminary stakeholder engagement (e.g., one-on-one meetings with invited summit presenters or participants). The on-going summit activities and events were determined throughout using an iterative approach and based on participant input.
A mapping process was used to create a representative participant list of people with lived experience and content experts. The goal was to achieve representation from across Canada geographically and to include a variety of multidisciplinary health care providers at different stages of their career, leading research experts in MS rehabilitation topics (e.g., fatigue, mobility, quality of life etc.) and experts in knowledge mobilization, in addition to representation from the Canadian Network of MS Clinics, the national network of academic and community-based clinics treating Canadians with MS.
The summit was held virtually to maximize representation and accessibility. The varying events and activities of the summit included presentations, discussion panels, workshops, breakout group discussions, anonymous consensus building surveys, and follow-up meetings after a period for reflection. Workshops included large group engagement, small group brainstorming, round table discussion, and in-session polling and voting. Zoom was used to host presentations, workshops, and meetings, and SurveyMonkey was used for surveys. Figure 1 provides an overview of the Summit components and their focus.
Figure 1.
An Overview of the Main Activities and Events of the ‘Summit’ and the Focus of Each Phase.
The varying activities and events of the multifaceted summit ran throughout 2023 and 2024. To start there was a half day of presentations followed by a half day workshop. A month later there was a second half day workshop, and 3 months later, a follow-up reflection meeting. Anonymous information gathering and consensus surveys were circulated in between. After these initial events, quarterly meetings were held for follow-up and action planning. This schedule was co-created with participants throughout the project. The follow-up meetings were scheduled to allow participants to engage again after a period of reflection, and the action planning meetings facilitated collaboration in moving identified priorities forward. The opportunity to provide further insight or input on any of the material presented or discussed was provided electronically (by email communication and a survey link distributed one month prior to meetings) and in real time, virtually, during meetings.
Large and small group engagement sessions from workshops and meetings were audio recorded, transcribed, and then coded to identify main themes to inform survey development. Surveys were analyzed using descriptive statistics for closed-answer questions and qualitative description for open-answered questions. Findings were shared in large group sessions for discussion and smaller group breakout sessions allowed further discussions. All results, presentations, and large and small group sessions were recorded and available to participants to review and for reflection. Participants with scheduling conflicts unable to attend all aspects of the summit were invited to review the recordings and presentations.
Results
Forty-three key stakeholders participated in the summit. Participants included representation of geographical and content expertise, including early, mid, and late career MS content experts, health care providers and people with lived experience.
Through participant engagement, preliminary ‘needs statements’ were identified based on workshop 1 activities and anonymous surveys post-workshop 1. The group had the opportunity to review these statements and to suggest modifications or additions. The group identified 18 need statements. During workshop 2, the need statements were discussed by the group based on their relationship to each other and to participants’ perspectives on knowledge mobilization, resulting in the schematic displayed in Figure 2. This schematic aims to capture the scope and different areas of knowledge mobilization discussed by summit participants. The schematic identifies interrelated components, highlights that evidence synthesis alone is not enough to influence practice change, and that knowledge mobilization is a complex process. In addition to confirming the importance and need for knowledge mobilization initiatives in MS rehabilitation, the group discussed that knowledge mobilization efforts should be layered and target multi-stakeholders in parallel (e.g., specialist, generalist, person with lived experience).
Figure 2. A Conceptual Overview of the Relationships between need Statements and Areas of Knowledge Mobilization Identified by Summit Participants.
This schematic represents the components of knowledge mobilization that were shared by summit participants. On the left side ‘column’, the importance of research in rehabilitation intervention studies, but also in current services, access to services, and implementation is represented. The ability to access synthesized research was seen as important but also emphasized as separate from a best-practice guideline. Evidence-based reviews inform guideline development, but guidelines take an additional step of making recommendations based on clinical application into local health care services. Guidelines were seen as critical in supporting development in clinical pathways and models of care and to enhance advocacy for health services. Establishing quality indicators and metrics for clinical recommendations can further enhance advocacy and monitoring of effectiveness. A method of monitoring health services (e.g., data monitoring platform) and capturing quality metrics stood out as a key component to inform and evaluate knowledge mobilization. A strategy was seen as a bigger picture component that helps build towards equitable access to a standard of care provincially and nationally. Knowledge transfer tools and implementation supports were identified as separate but related items. Both are needed and should be tailored to different end-users. Implementation supports were emphasized as going beyond sharing information and actually supporting application. All components should be governed by some collective collaborative effort, partnership, engagement and project specific working groups.
The 18 need statements were also rated (by an anonymous survey), on perceived feasibility and importance (Figure 3). Based on these ratings, three stood out among the others as most important. During workshop 3 the needs statements were discussed, and in-session anonymous polling was used to further affirm consensus on the top three identified statement priorities.
Figure 3. Rating of Need Statements Based on Importance.
- Creation of additional MSBEST evidence-based review modules and establishing methods to sustain/efficiently do comprehensive evidence-based synthesis
- Condense findings in existing MSBEST review modules into more a ‘user friendly’ format and recommendations for health care providers
- Condense findings in existing MSBEST review modules into a ‘user friendly’ format and recommendations for persons living with MS
- Condense findings in existing MSBEST review modules into a ‘user friendly’ format and recommendations for policy makers and health systems stakeholders
- Create a best-practice guideline and identify the key areas/domains to start with for best-practice recommendations
- Establish a process/methods for indicator development and create quality indicators (e.g., outcome, structure, process indicators) for best-practice
- Establish formalized partnerships, a network/consortium + working groups, and funding for this knowledge mobilization work
- Clarify and break down the ‘black box’ of MS rehab (e.g., scope and components)
- Identify what current rehab and aspects of comprehensive MS care are being provided across Canada
- Expose disparities in MS care across Canada
- Conduct high-quality large-scale MS rehab research trials
- Outline a ‘pathway’/ideal model or flow of care/proposing optimal health system and services in comprehensive MS care
- Develop data variables, metrics and a potential MS care registry for rehab
- Identify strategies to evaluate how the process of rehab impacts patient outcomes
- Establish a community of practice and training opportunities for frontline Canadian health care providers in MS rehab/comprehensive care
- Develop strategies for recruitment and retention of rehab providers to MS health care
- Establish a process and network for efficient stakeholder engagement that can be used across initiatives
- Create a strategy and supports for advocating for health services and systems change at the national, provincial and regional/site specific level
Developing a best-practice guideline for MS rehab was unanimously identified as a critical first priority. The other top two needs statements confirmed by in-session polling were to develop knowledge mobilization tools for health care providers and to officially establish a Canadian MS Rehab knowledge mobilization network. It was discussed that such a network would be critical for moving key priorities forward, seeking out partnerships and funding, and facilitating meeting regularly to advance MS rehab knowledge mobilization. The group also unanimously voted in session that further ranking or consensus scoring of the other 15 need statements was not necessary at this time, as the first three priorities were deemed critical underpinnings. There was consensus that these other statements would be re-visited at future meetings of the Knowledge Mobilization Network. The top three need statements were refined through further discussion, and became the focus on future action planning meetings to move them forward.
A list of rehabilitation topic areas was also generated from group discussion. Participants were asked (via survey) to select their top five topics from this list based on the perceived need for knowledge mobilization initiatives related to the topic. The five most frequently selected topics were: rehabilitation across the MS disease course, fatigue, mobility, mood and emotional wellbeing, and cognition. This will be the initial topic areas of focus for guideline development and knowledge mobilization tools for health care providers.
Other key concepts discussed as part of the summit included target audiences, and a needed structure for knowledge mobilization efforts and tools. Supporting health care providers through multiple formats was deemed important for successful knowledge mobilization. The main formats suggested included a website to host material, handouts, infographics, podcasts, links to more detailed information, and prioritizing clinical recommendations and developing corresponding toolkits to support clinical application. Further engagement with a larger community of health care providers and people with lived experience was recommended as a key part of future development of implementation tools and supports. Participants shared perspectives about the need for continuous commitment to knowledge mobilization. Creative solutions to sustain such efforts are needed since current research funding and clinical funding streams still often fail to address gaps in knowledge mobilization: “It's a long game – there isn’t a start, middle, and end like a traditional research project. It requires ongoing conversations, strategy, and investment.” (Summit participant, large group workshop #2 recording).
At the follow-up meetings, the group discussed action planning to address the identified knowledge mobilization priorities (e.g., funding opportunities and avenues, approaches and methods for best practice in guideline development, further consultation with other organizations that have developed guidelines, engagement with clinical community etc.)
A potential framework and key components of a future guideline were created. The layout, domains, and topic areas of existing guidelines for spinal cord injury, brain injury, and rehabilitation and recovery post-stroke facilitated this discussion. The group decided to move forward with identifying and evaluating existing guidelines across the globe that include recommendations on MS rehabilitation and symptom management using the AGREE II rating tool. (Brouwers et al., 2010) The AGREE II tool is validated for its ability to assess the rigor and quality of guidelines. Appraisal of existing guidelines will be informative in the development of a future MS rehabilitation clinical best-practice guideline. The group also acknowledged that ongoing engagement and collaborative efforts are needed and the summit resulted in the launch of the ‘Canadian MS Rehab Knowledge mobilization Network’. Participants of the summit volunteered to be founding members of this Network, which aims to continue to advance and review the identified priorities from the summit.
Discussion
This summit process facilitated ongoing and sustained collaboration among participating stakeholders in identifying the complexities and challenges with MS rehabilitation (in the Canadian health care context) with subsequent setting of a prioritized knowledge mobilization agenda to start addressing these challenges. We engaged multi-stakeholders in discussion early (e.g., need for summit and summit planning) and often (e.g., throughout the multiple components of the summit), grounding our approach in co-creation of the knowledge mobilization needs and priorities for MS rehabilitation. Sharing a modified visual of the ‘pipeline of research to practice’ (Green, 2008) was a useful starting point to facilitate discussion on what is knowledge mobilization and to come to a mutual conceptual understanding on the diverse components of knowledge mobilization. It was acknowledged that the pipeline figure depicted a deceivingly linear and simple process for moving research findings into change in clinical practice and health care services. From this starting point, a more detailed and representative schematic of the known research to practice ‘complexities’ (Braithwaite et al., 2018) was co-created as another output from the summit (Figure 2). We encourage funders, researchers, and clinicians to consider the multiple components of knowledge mobilization that need to be tackled to move towards equitable access to a standard of MS rehabilitation care. Under-emphasizing and underfunding implementation initiatives may actually delay the translation of research findings into meaningful practice changes. (Villalobos et al., 2023)
The co-creation or participatory approach to knowledge mobilization we used is a strength as the creation of knowledge among varied stakeholders is more likely to positively impact the research to practice gap. (Greenhalgh et al., 2016; Langley et al., 2018) We acknowledge the challenges in implementation science evolution with many different applied and interchangeable terminologies (Powell et al., 2015); these complexities combined with varied stakeholder experiences, may lead to misunderstandings and challenges with successful consensus building. (Langley et al., 2018) Despite these challenges, summit participants were aligned in the identified need statements and particularly, in the top three knowledge mobilization priorities. The iterative summit process and priority setting surveys allowed participants to ‘start somewhere’ in tackling the research to practice gaps in MS rehabilitation. However, the priorities from the summit are each large in scope. They will require further collaboration and investment in time and resources to achieve and sustain.
The identified top priority was the creation of a Canadian clinical practice guideline for MS rehabilitation and symptom management, and the second priority was to create knowledge mobilization tools for health care providers. Alignment with these priorities was likely not a coincidence given the existing well-established Canadian rehabilitation knowledge mobilization initiatives in stroke, spinal cord injury, and brain injury. During the summit, respective leaders in these health conditions shared their experiences and lessons learned from their knowledge mobilization journeys, likely influencing the priorities identified for MS. Clinical practice guidelines include recommendations intended to optimize patient care that are informed by evidence synthesis, clinical context, and an assessment of the benefits and harms of alternative care options. (Pereira et al., 2022) Such a guideline has the ability to inform health care processes and improve health outcomes. Yet, within the greater landscape of knowledge mobilization strategies, the creation of practice guidelines alone is unlikely to change practice. (Panteli et al., 2019) Guidelines housing implementation tools (e.g., of the guidelines into health systems), suggested metrics (e.g., ways to evaluate implementation efforts and measure effects of applying guidelines), and training and application tools (e.g., to help clinicians apply the recommendations in routine clinical approach) may be most successful at changing practice. (Correa et al., 2020) Guidelines have historically not included accompanying implementation tools and were not accessible at the point of care. In contrast, newer guidelines are freely accessible on open access, web-based and mobile friendly platforms. Many have successfully integrated various implementation tools (i.e., application tools, pocketbooks, mobile apps to facilitate individualized patient centered care). Consensus about how to create, sustain and implement a Canadian MS rehabilitation practice guideline was beyond the scope of the summit. It will be important to consider barriers and facilitators for practice changing knowledge mobilization efforts going forward (Fisher et al., 2016; Gallione et al., 2022). Wide scale collaboration efforts among multiple partners are more likely to lead to impactful practice change. (Brownson et al., 2017) Encouragingly, a Canadian collaboration among multidisciplinary health care providers, academics, and people with lived experience was part of the summit process, leading to the formation of a knowledge mobilization network - the third identified priority of the summit.
Summit participants also identified five priority topic areas in MS rehabilitation to target for knowledge mobilization initiatives: Rehabilitation across the MS disease course, fatigue, mobility, mood and emotional wellbeing, and cognition. Not surprisingly, these topics also align with the priorities identified by people living with MS in terms of factors negatively affecting quality of life. (Gil-Gonzalez et al. 2020; Karhula et al., 2019; O’Mahony et al., 2022) A Canadian survey study of people living with MS found that the top three healthcare providers that participants reported needing to see but did not have access where occupational therapy, physical therapy, and mental health providers (Petrin et al., 2021). A challenge that knowledge mobilization efforts will help address is to provide resources for the training and recruitment of these health care providers in the care of people living with MS.
This summit had limitations. While we attempted to include representation across the Canadian geography, the Atlantic provinces were underrepresented (n = 4 across 4 provinces). Participation was more heavily weighted for the province of Ontario (n = 17), which contains 1/3 of Canada's total population and 7 specialized MS clinics. There was also missing representation from the allied health professions of speech language therapy, recreation therapy, dieticians, and pharmacy, as well as home care workers. Allied health care professionals and their trainees are the current and future human resource force positioned to provide evidence-based multidisciplinary care. Other physician specialists providing primary care, urology, pediatric or end of life care were also not (well-)represented. Stakeholders representing government (e.g., Ministries of Health) and health administration were not included, which allowed a certain degree of independence, however their contributions to advancing the knowledge mobilization agenda will be critical, as demonstrated by Canadian initiatives in other neurological conditions. For example, the Ministries of Health in Ontario and Quebec supported the creation of the Canadian Clinical Practice Guideline for the Rehabilitation of Adults with Mild to Moderate Brain Injury, and the Canadian Government supported the Stroke Strategy and initial development of the Stroke Best Practice Guidelines (now supported and housed by Heart and Stroke). The Spinal Cord Injury Research Evidence Project which houses a large inventory of implementation tools, has multi-stakeholder funders including government. Future direction includes establishing representation from all relevant stakeholders to advance the MS knowledge mobilization agenda. Discussing and refining other identified need statements and looking at health service gaps and models of care will be important to support meaningful uptake and evaluation of future clinical guidelines.
The summit was a valuable opportunity to engage stakeholders and it helped to discuss terminology and perspectives around knowledge mobilization, bringing stakeholders on the same page of understanding why we are doing this work. Sharing both the process and our findings may help inform future initiatives. Research findings alone are not enough to change practice/care approaches, and clinical research and practice guidelines are not self-implementing. Therefore, knowledge mobilization initiatives are needed in order to increase impacts of research. The summit highlighted that our MS rehab knowledge mobilization initiative will require an ongoing collaborative and iterative process to improve care across the MS disease course and care continuum, with the end goal of improving the quality of life for people with MS. This multicomponent summit provided a needed starting point and consensus building opportunity for setting a prioritized knowledge mobilization agenda for MS rehabilitation. Summit participants came to consensus on a short list of priorities - albeit each large in scope, aimed at reducing the gap between research and practice in the Canadian health care setting. The learnings and establishment of a Canadian MS Rehab Knowledge Mobilization Network as outputs from this summit will inform advocacy efforts for improved access to evidence based comprehensive care and inform funding and partnership opportunities to support moving a sustainable MS knowledge mobilization agenda forward.
Footnotes
ORCID iDs: Sarah J. Donkers https://orcid.org/0009-0009-6973-0961
Ruth Ann Marrie https://orcid.org/0000-0002-1855-5595
Penelope Smyth https://orcid.org/0000-0003-1174-4577
Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Funding for this work was provided through research grants from the University of Saskatchewan College of Medicine, the Saskatchewan Health Research Foundation, and the Ralph M. Barford Foundation.
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Data Availability Statement: Data for this project is available from the corresponding author upon reasonable request.
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