Purpose of the PSP and background
The purpose of this protocol is to clearly set out the aims, objectives and commitments of the Occupational Therapy for Musculoskeletal Conditions & Arthritis Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA.
The JLA is a not-for-profit initiative, established in 2004. It brings patients, caregivers, researchers, and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties that have not yet been addressed by research, also known as ‘unanswered questions’, that they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs, including the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP, have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, caregivers, and clinicians. This project is the first time that people living with musculoskeletal (MSK) conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations have worked in a partnership to determine the profession’s future research priorities. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.
The purpose of the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP is to engage with key stakeholders (including people living with MSK conditions and arthritis, their caregivers, researchers, and occupational therapists), to identify the occupational therapy research priorities in Canada for people living with MSK conditions and arthritis. Funding for the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP is being provided by The Canadian Institutes of Health Research (CIHR). The Canadian Institutes of Health Research – Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA), one of thirteen institutes of CIHR, supports research to enhance active living, mobility and movement, and oral health; and addresses causes, prevention, screening, diagnosis, treatment, support systems, and palliation for a wide range of conditions related to bones, joints, muscles, connective tissue, skin and teeth. A steering group consisting of people living with MSK conditions and arthritis, their caregivers, researchers, and occupational therapists was brought together to oversee the PSP process that will establish research priorities. This includes occupational therapists’ representatives from The Canadian Association of Occupational Therapists (CAOT), The Association of Canadian Occupational Therapy University Programs (ACOTUP) and The Canadian Occupational Therapy Foundation (COTF). Participants were purposefully chosen to have different areas of expertise and levels of experience, work in various sectors, and come from various geographical locations. This steering group will meet virtually every month to discuss and agree on the aims, objectives, and commitments of the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP.
Aims, objectives and scope of the PSP
The aim of the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP is to identify the unanswered questions about Occupational Therapy for Musculoskeletal Conditions & Arthritis from the shared perspectives of people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations, and then prioritise those unanswered questions that these groups agree are the most important for research to address.
The objectives of the PSP are to:
- work with people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations
- to agree by consensus on a prioritised list of those uncertainties for future research
- to publicise the results of the PSP
- to take the results to research commissioning bodies to be considered for funding.
The focus of the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP is on practice-based occupational therapy. Occupational therapy aims to enable people living with MSK conditions and arthritis to participate in daily activities and meaningful life roles at home, work, for leisure and socially, and to enhance well-being and quality of life. It involves the use of individualized assessment and customized interventions, such as splints, assistive devices and strategies, to help people living with MSK conditions and arthritis develop, recover, or maintain engagement in activities they find meaningful. IMHA’s mandate includes a wide range of conditions related to bones, joints, muscles, connective tissue, skin as well as the mouth, teeth and craniofacial region (IMHA, 2021). All of these conditions are within the scope of this project. The scope of the Occupational Therapy for Musculoskeletal Conditions & Arthritis Priority Setting Partnership will encompass:
- perspectives gathered from across Canada in English and French;
- needs and perspectives of people of any age with MSK conditions and arthritis who may have occupational performance issues as a result of their condition, and their caregivers;
- perspectives of people of any age with MSK conditions or arthritis accessing occupational therapy services and their caregivers about the services, information, assessments, interventions and outcomes provided by those services;
- perspectives reflective of the range of practice-based roles contributing to the delivery of occupational therapy services to people with MSK conditions and arthritis, such as occupational therapists and support personnel, and members of occupational therapy organizations.
The PSP will exclude from its scope questions about:
- occupational therapy practice outside Canada;
- services with significant competing or commercial interests, such as pharmaceutical or device manufacturing companies
The Steering Group will discuss the implications the PSP scope will have on the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.
The Steering Group
The Steering Group includes membership of people living with MSK conditions and arthritis, their caregivers, occupational therapists, and researchers, as individuals or representatives from a relevant group.
The Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP will be led and managed by a Steering Group involving:
Annette McKinnon is a patient partner with a long history of arthritis and musculoskeletal issues, who has often received advice and support from Occupational Therapists. Her lived experience gives her a unique view of the way both treatments and teamwork have evolved over time, including the changing roles of patients and patient groups as members of the team.
Bernadette Nedelec is an occupational therapist, a certified burn therapist, and a Professor at McGill University. Her research lab is embedded within the clinical space so that the research team can closely collaborate with the clinicians and patients on projects which predominantly focus on burn survivor specific rehabilitation research.
Catherine Backman is a professor at the University of British Columbia and senior scientist at Arthritis Research Canada, on the cusp of retirement after 42 years as an occupational therapist. Her research explored the impact of arthritis on people's participation in paid and unpaid work, and the impact of rehabilitation interventions. She represents CAOT on the project's advisory committee.
Cathy Choi is an Occupational Therapist with over 20 years of clinical experience in MSK, 15 years working with clients in Seating Clinic, and she is a sessional co-instructor in Biomechanics in the Department of OS&OT at the University of Toronto. She analyses mobility and function in daily living, from not only a biomechanical perspective, but also as a person living with arthritis.
Eileen Davidson is a patient partner involved in advocacy and research. She brings the patient perspective to the table.
Elizabeth Taylor is a retired occupational therapist with 49 years of experience. She is the president of The House Next Door Society and has been a consultant in education for the Canadian Association of Schools of Nursing, the Canadian Physical Therapy Association and the Ontario Government Graduate School Council, as well as the past president of the Canadian Association of Occupational Therapists. She is also chair of the board of directors for the Canadian Institute for Military and Veteran Health Research (CIMVHR).
Emily Ho is an occupational therapist in the Division of Plastic and Reconstructive Surgery at the Hospital for Sick Children (SickKids) and an Assistant Professor in the Department of Occupational Science and Occupational Therapy at the University of Toronto. As an international leader in clinical care, outcomes evaluation, and research of children with musculoskeletal upper limb conditions, she brings the perspective of children/youth and their families, clinicians, and researchers in the field of paediatric musculoskeletal rehabilitation to the PSP.
Dr. Jocelyn Harris is an occupational therapist and associate professor in the School of Rehabilitation Sciences, McMaster University, Hamilton, Ontario, Canada. Her clinical and research expertise is the development and testing of rehabilitation interventions for those with neurological conditions as well as the older adult population. Further research priorities involve improving mobility in adults and older adults and the use of technology in rehabilitation.
Josée Séguin is an occupational therapist and the Director of Knowledge Translations Program at the Canadian Association of Occupational Therapists (CAOT). She is the co-chair of the James Lind Alliance (JLA) Priority Setting Partnership (PSP).
Karine Toupin April is a professor at the University of Ottawa and affiliate scientist at the Children’s Hospital of Eastern Ontario Research Institute and Institut du savoir Montfort. She has been conducting research in paediatric and adult rheumatology, patient-reported outcome measures and shared decision making, and is trained as an occupational therapist and epidemiologist.
Mary Forhan is the Academic Administrator of an Occupational Therapy Department and a researcher (adult populations).
Paula Rushton is an occupational therapist, researcher and Associate Professor.
Sarah Thorne has almost 2 decades of frontline clinical experience across diagnostic categories. She is the clinical lead of the Centre of Arthritis Excellence (CArE), Ontario's first specialty family health team.
Tara Packham is an occupational therapist with experience working with acute and chronic MSK conditions (including pain), as well as a pain researcher. She also has lived experience with osteoarthritis and as a caregiver in her home for elders with MSK conditions and comorbidities.
Tamara Rader is a James Lind Alliance Adviser.
Emma Guyonnet is the research coordinator.
The Steering Group will agree on the resources, including time and expertise that they will be able to contribute to each stage of the process, with input and advice from the JLA advisor.
Organisations and individuals are invited to be involved with the PSP as partners, particularly those organisations which can reach and advocate for the key groups involved in the PSP. Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate. Partners will represent the following groups:
- people who have Musculoskeletal Conditions and/or Arthritis
- caregivers of people who have Musculoskeletal Conditions and/or Arthritis
- Occupational therapists - with experience of Musculoskeletal Conditions and/or Arthritis
- Occupational therapy education/organizations and research institutions
Our current partners include:
- The Canadian Association of Occupational Therapists (CAOT)
- The Association of Canadian Occupational Therapy University Programs (ACOTUP)
- The Canadian Occupational Therapy Foundation (COTF)
Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias to the PSP process. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.
The methods the PSP will use
This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation between the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the Guidebook section of the JLA website at www.jla.nihr.ac.uk where examples of the work of other JLA PSPs can be seen.
Step 1: Identification and invitation of potential partners
Potential partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP.
Step 2: Awareness raising
Steering Group members of the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP will need to raise awareness of their proposed activity among people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations, in order to secure support and participation. Depending on budget, this may be done by a face-to-face meeting, or there may be other ways in which the process can be launched, e.g., via social media. It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:
- to present the proposed plan for the PSP
- to generate support for the process
- to encourage participation in the process
- to initiate discussion, answer questions and address concerns.
Step 3: Identifying evidence uncertainties
The Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP will carry out a consultation to gather uncertainties from people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations. A period of three months will be given to complete this exercise (which may be revised by the Steering Group if required).
The method of consultation must be transparent, inclusive and representative. The Steering Group must try to reach as representative a range of participants as feasible. Methods may include membership meetings, email consultation, postal or web-based questionnaires, internet message boards and focus groups.
Existing sources of evidence uncertainties may also be searched. This evidence can include research recommendations identified in scoping and other systematically conducted literature reviews, research reports/literature, clinical guidelines, protocols for systematic and scoping reviews being prepared, and registers of ongoing research in Canada.
Step 4: Refining questions and uncertainties
The consultation process will occur in both English and French and will produce ‘unedited’ questions and comments indicating the areas of uncertainty from the perspectives of people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations. To clarify the precise uncertainty, which may have been submitted with a lot of narrative text, these unedited questions will be categorised and refined by the Information Specialist into summary questions that capture the meaning of the original submission. These summary questions are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Submissions that can be answered by research, known as ‘answered’ submissions, and those that are out-of-scope will be compiled separately. The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.
This will result in a long list of in-scope summary questions. These are not research questions, as to try to word them as such may make them too technical for a non-research audience. The summary questions will instead be framed as researchable questions that capture the themes and topics that have been suggested.
Systematic reviews, guidelines and large randomized controlled trials (RCT) will be identified and verified by the PSP Information Specialist to see to what extent these refined questions have, or have not, been answered by previous research. The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify whether or not the question has already been answered by research, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to verify uncertainty. The Question Verification Form will be published on the JLA website as soon as it has been agreed to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this process.
Sometimes, uncertainties are expressed that can in fact be resolved with reference to existing research evidence - i.e. they are "unrecognised knowns" and not unanswered questions. For example, if a question about interventions can be answered with existing information but this is not known, it suggests that information is not being communicated effectively to those who need it. Accordingly, the PSP will decide whether to keep the question as an unanswered question.
Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by the PSP Information Specialist. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, in order to ensure that PSP results are publicly available.
The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.
Step 5: Prioritisation – interim and final stages
The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about Occupational Therapy for Musculoskeletal Conditions & Arthritis. This will involve input from people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations. We will encourage engagement from as wide a range of people as possible, including those who did and did not contribute to the first consultation. There are usually two stages of prioritisation:
- Interim prioritisation is the stage where the long list of questions is reduced to a shorter list that can be taken to the final priority setting workshop. This stage is aimed at a wide audience and will involve an on-line survey in English and French. With the JLA’s guidance, the Steering Group will need to consider how best to reach and engage a wide range of people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations in the process. The most highly ranked questions (approximately 20) will be taken to a final priority setting workshop. In the event that the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.
- The final priority setting stage is a virtual workshop over two half-days facilitated by the JLA. The workshop will take place in English. With guidance from the JLA and input from the Steering Group, up to 30 people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and/or members of occupational therapy organizations will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.
Dissemination of results
The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority setting process, such as researchers, funders of research and the patient and clinical communities. Dissemination at the end of the PSP should be a consideration throughout the PSP process to maximise its success. They will need to determine how best to communicate the results and who will take responsibility for this step. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media. Results will be available in both English and French.
It should be noted that the priorities are not worded as research questions. The Steering Group will need to discuss how they will work with researchers and funders to establish how to address the priorities and to clarify the research questions that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by Josée Séguin and Mary Forhan.
The PSP will report back to the JLA about any activities that have come about because of the PSP, including funded research, by sending any details to email@example.com.
Agreement of the Steering Group
The Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP Steering Group agreed the content and direction of this Protocol on 08/09/2022. This protocol was amended on 06/20/2023.
CIHR-IMHA (2021). ‘About IMHA’. Available at: https://cihr-irsc.gc.ca/e/8603.html (Accessed 13 June 2022)