This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance (JLA) Occupational Therapy for Musculoskeletal Conditions & Arthritis: Priority Setting Partnership (PSP). The background and wider aims and responsibilities of the Occupational Therapy for Musculoskeletal Conditions & Arthritis: PSP are set out in its Protocol.
Introduction to the James Lind Alliance and priority setting
The JLA is a not-for-profit initiative which enables patients, caregivers, researchers and clinicians to work together to identify and agree upon priorities for research.
Each PSP consists of patients, caregivers, researchers and clinicians, and is led by a Steering Group. The Steering Group oversees the activities of the PSP and has responsibility for the activity and the outcomes of the PSP. Such collaboration between all relevant parties is essential to highlight and prioritize potential research targets for funding and to build public awareness.
The role of the PSP is to identify questions that have not been answered by research to date, and then to agree which of these are the most important. The first stage is to ask people living with MSK conditions and arthritis, their caregivers, occupational therapists and support personnel, researchers, patient engagement specialists and members of occupational therapy organizations, via an online survey, for unanswered questions about occupational therapy for MSK conditions and arthritis. These questions are then reviewed to confirm that they are within scope of the project, and that they have not already been answered by research. An interim prioritisation exercise then takes place, before a priority setting workshop is convened where participants discuss the most important questions and agree on a list of the Top 10.
The aim of the PSP, following the approximately 18 month-long prioritisation process, is to turn these priorities into research questions, and for members of the Steering Group to work with funding organizations to support occupational therapy research.
In addition to the PSP’s own reporting activity, the JLA will publish all priorities on the JLA website. Further details about the JLA and PSPs are at http://www.jla.nihr.ac.uk/. A flowchart of the PSP process can be seen in the Templates and useful documents section of the JLA website at http://www.jla.nihr.ac.uk/about-the-james-lind-alliance/templates-and-useful-documents.htm.
The Occupational Therapy Priority Setting Partnership
Membership of the Steering Group
The Steering Group membership must include 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.
It is agreed that for the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP, at least one patient/caregiver, one clinical occupational therapist, one association representative, and one advisory committee representative will need to be present for Steering Group meetings to be quorate. If a meeting is held without this minimum number and composition then the Group that meets will make recommendations, rather than final decisions, to be agreed by the wider Group at a later date.
Role of Steering Group members
Steering Group members are asked to contribute, as a minimum, their expertise and time, and to be prepared to approach their established contacts and networks.
All Steering Group members are asked to commit to working according to the JLA principles:
- Inclusivity: working with other members respectfully and constructively and ensuring the full range of patient, caregiver and clinical stakeholders are involved in the PSP process.
- Equality: people living with MSK conditions and arthritis, their caregivers, researchers and occupational therapists, and the knowledge and experience they bring, are of equal value to the PSP. Their opinions are treated equally and differences in opinions are respected
- Fairness and transparency: declaring any personals interests, and ensuring decisions and activities are documented openly.
- Evidence based: ensuring the work of the PSP recognises the existing knowledge base for Occupational Therapy for Musculoskeletal Conditions & Arthritis and contributes to this through the PSP’s evidence checking and open publication of information from the PSP.
Members of the Steering Group will need to agree the resources (including time and expertise) that they will contribute to ensure that each stage of the process is completed. Members of the Steering Group will:
- Publicise the PSP to potential partners. This includes advising on contacts for the PSP (to ensure a wide and representative group of people living with musculoskeletal (MSK) conditions and arthritis, their caregivers, researchers and occupational therapists) and emailing contacts to invite them to participate
- Publicise and participate in an initial awareness meeting if this takes place
- Take part in monthly Steering Group meetings/teleconferences. It is usual for a Steering Group to meet either by teleconference or face to face on an approximately monthly basis to keep momentum around the PSP and to maintain their relationship as a team. Meetings will last approximately one hour.
- If unable to attend, submit comments ahead of the meeting. Where a Steering Group member is unable to attend a meeting, decisions made at the meeting will be respected
- Respond promptly with feedback on project materials by responding to emails
- Have oversight of the collection of evidence uncertainties from people living with musculoskeletal (MSK) conditions and arthritis, their caregivers, researchers, occupational therapists, and existing literature
- Oversee and lend expertise to the data management process, including agreeing the scope and process for data-checking
- Have oversight of the interim priority setting stage
- Sign off the final shortlist of questions to be taken to the priority setting workshop
- Oversee the planning for the priority setting workshop and help to publicise it. This is the workshop that brings people living with musculoskeletal (MSK) conditions and arthritis, their caregivers, researchers and occupational therapists together to debate, rank and agree a final Top 10. Participants are people living with musculoskeletal (MSK) conditions and arthritis, their caregivers, researchers and occupational therapists who actively work with them. Typically, not all members of the Steering Group take part, allowing space for new participants
- Ensure that the PSP’s working spreadsheet of uncertainties and the final prioritised list of questions are supplied to the JLA, for publication on the JLA website
- Help publicise the final top 10 uncertainties to the research community
- Be involved in the development of research questions from the agreed priorities, and work with research funders where necessary to provide any extra information they need.
Specific Roles
Chair: The PSP will be chaired by Tamara Rader, a JLA Adviser. The JLA Adviser also Chairs and runs the priority setting workshop. The JLA Adviser’s role is to support and guide the PSP, as a neutral facilitator, ensuring that the process is followed in a fair, transparent way, with equal input from patients, caregivers and clinicians and their representatives.
Leads: Josee Seguin and Mary Forhan are the leads for the PSP. The Leads works closely with the JLA Adviser and the PSP coordinator to champion the PSP and ensure it is successfully promoted, completed and disseminated to funders.
Coordinator: Emma Guyonnet is responsible for the coordination and administration of the PSP. This includes arranging all meetings and workshops, and ensuring that:
- requests for agenda items are discussed with the group
- papers are available at least a week before meetings
- meeting notes are reviewed by the Chair, circulated within two weeks, and reviewed and agreed at the next meeting.
Information Specialist: Emma Guyonnet is the Information Specialist for the PSP. Their role is to advise the Steering Group on data management and analysis strategies and agree these with the group. They also review and analyse the data collected, review existing evidence, and help develop the long list of questions, under the guidance and assurance of the Steering Group. It is helpful if the Information Specialist has content knowledge in the subject area of the PSP. However, if the Information Specialist is well supported by the Steering Group this is not essential. The outputs delivered by the Information Specialist will be approved by the Steering Group.
Code of Conduct
It is important that members of the Steering Group work to high personal and professional standards. Steering Group members are expected to:
- behave in a manner which does not bring the PSP or the JLA into disrepute or damage the relationship with Steering Group members, partners, and any other stakeholders in the PSP
- maintain confidentiality when sensitive information is shared
- actively support diversity and inclusion and not discriminate against any person.
Everyone involved in the PSP should feel safe, respected, and able to contribute fully.
Anyone found to be in breach of this code may be removed from the Steering Group at the discretion of the PSP leader. Any concerns related to conduct should be raised with the PSP leader and/or the JLA Adviser.
Declaring interests
Steering Group members are asked to declare any interests relevant to the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP. The JLA provides an example Interests and Privacy form, and the interests of each member will be shared among the group. This is to encourage a culture of openness and transparency. Relevant interests may be professional, personal, or related to an interest in or involvement in clinical research. The same form asks Steering Group members to consider their agreement to being named in publicity about the PSP.
Researchers may sit on the Steering Group if the group feels this is appropriate and useful – the JLA Adviser will ensure that they do not have an undue influence on the outcome. Researchers who are currently clinically active may listen, act as a resource and participate in the priority setting if they declare their interests.
Timescales
The Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP will run for approximately 18 months until July 2023. The first Steering Group meeting will be on March 30th, 2022. We propose that the priority setting workshop takes place in June 2023, TBC.
Please refer to the Occupational Therapy for Musculoskeletal Conditions & Arthritis PSP protocol for details of the steering group members and their roles.