This document sets out the Terms of Reference for the Steering Group of the RCOT / James Lind Alliance Occupational Therapy Priority Setting Partnership. The Steering Group coordinates the Priority Setting Partnership (PSP) and organises its activities.
The Steering Group includes representatives of people who have experience of accessing occupational therapy services, their carers (1) and occupational therapists. Members of the Steering Group will bring with them knowledge of occupational therapy, an understanding of the people who have experience of accessing occupational therapy services, their carers and occupational therapists, and access to diverse networks of individuals from these populations. People who have experience of accessing occupational therapy services and their carers will range from the very young to those who are very much older, encompassing the whole life span. Members of the Steering Group will be fully engaged in this PSP and will give the time to carry out the work involved.
The background and wider aims and responsibilities of the Occupational Therapy PSP are set out in its Protocol.
Introduction to the James Lind Alliance and priority setting
The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004 with the aim of enabling groups of people who have experience of accessing health services, their carers and healthcare professionals to work together to agree priorities for health research. The JLA facilitates PSPs in particular health areas.
Each PSP consists of people who have experience of accessing healthcare services, their carers and representatives, and healthcare professionals, and is led by a Steering Group. Collaboration between people who have experience of accessing healthcare services, their carers and healthcare professionals to set the research agenda has been extremely rare, but is vital in drawing issues to the attention of research funders that might not otherwise be suggested or prioritised.
The role of the PSP is to identify questions that have not been answered by research to date, and then to prioritise these. The first stage is to ask people who have experience of accessing healthcare services, their carers and healthcare professionals, often via an online survey, for unanswered questions about occupational therapy. These questions are then assessed to check they are in scope for the PSP, and are checked and verified as true uncertainties. An interim prioritisation exercise then takes place, before a priority-setting workshop is convened where participants debate and finally arrive at a Top 10 list of research priorities.
The eventual aim, 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 researchers and research funders to obtain funding for that research to be undertaken.
All JLA PSPs will display 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 is a balance of people who have experience of accessing occupational therapy services, their carers and occupational therapists.
It is agreed that for the Occupational Therapy PSP, one person who uses occupational therapy services/their carer representatives and one health and social care professional/occupational therapist will need to be present in order for Steering Group meetings to go ahead and for decisions to be made. 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, carer and clinical stakeholders are involved in the PSP process.
- Equality: people who access occupational therapy services, their carers and occupational therapists, and the knowledge and experience they bring, are of equal value to the PSP.
- 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 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 initiative to potential partners. This includes advising on membership of the PSP (to ensure a wide and representative group of people who access occupational therapy services, their carers and occupational therapists) and emailing contacts to invite them to participate.
- Publicise and participate in an initial awareness meeting.
- Take part in monthly Steering Group meetings/teleconferences. The Steering Group will meet either by teleconference or face to face on an approximately monthly basis in order to keep momentum around the PSP and to maintain the relationship as a team.
- 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 who access occupational therapy services, their carers and 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.
- Agree the final shortlist of questions to be taken to the final priority setting workshop.
- Oversee the planning for the final priority setting workshop, and help to publicise it. This is the one-day workshop that brings people who have experience of accessing occupational therapy services, their carers and occupational therapists together to debate, rank and agree a final Top 10. It is only attended by people who have experience of accessing occupational therapy services, their carers and occupational therapists or support workers who actively work with them. Typically not all members of the Steering Group attend, 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.
Reimbursement
All members of the Steering Group will be reimbursed for reasonable expenses, such as travel and subsistence, incurred as a result of attendance at meetings. People who have experience of accessing occupational therapy services/their carers will be compensated for their time at the rate recommended in the Involve: Policy on payment of fees and expenses for members of the public actively involved with INVOLVE, dated February 2016.
Specific Roles
Chair: The PSP will be chaired by Katherine Cowan, a JLA Adviser. Katherine will also Chair and run the final priority setting workshop. Her 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, carers and clinicians and their representatives.
If Katherine is unable to chair a meeting for some reason then efforts will be made to find someone to deputise. This person will be either a representative from the JLA or a member of the PSP Project Team.
Strategic Lead: Dr Jo Watson, RCOT Assistant Director – Education and Research. Jo will work closely with the JLA Adviser, the Project Lead and the Project Coordinator to champion the PSP and provide a strategic overview to the process.
Project Lead: Jenny Mac Donnell is the lead for the PSP. Jenny will work closely with the JLA Adviser, the Strategic Lead and the PSP coordinator to champion the PSP and ensure it is successfully promoted, completed and disseminated to funders.
Project Coordinator: Ruth Unstead-Joss 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: Dr Hannah Spring is the Information Specialist for the PSP. Her role is to advise the Steering Group on data management and analysis strategies and agree these with the group. She will 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. The outputs delivered by the Information Specialist will be approved by the Steering Group.
Declaring interests
Steering Group members are asked to declare any interests relevant to the Occupational Therapy PSP. The JLA provides an example 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 participate in the priority setting if they declare their interests.
Timescales
The Occupational Therapy PSP will run for approximately an 18 month period from January 2019.
Steering Group members
| Name | Representative in Steering Group |
| Anne Addison | Practitioner |
| Dr Maria Avantaggiato-Quinn | Service Manager |
| Dr Mary Birken | Practitioner researcher |
| Dr Michael Clark | Social Care |
| Katherine Cowan | PSP Chair |
| Dr Edward Duncan | Academic researcher |
| Clenton Farquharson MBE | Person with experience of accessing occupational therapy services |
| Dr Naomi Gallant | Practitioner researcher |
| Amy Mary Rose Herring | Person with experience of accessing occupational therapy services |
| Dr Jane Horne | Academic researcher |
| Dr Anne Johnson | Consultant occupational therapist |
| Jenny Mac Donnell | RCOT - PSP Lead |
| Veronica McWilliams | Centre Manager and practitioner |
| Dr Sarah Markham | Person with experience of accessing occupational therapy services |
| Dr Sally Payne RCOT | Professional Practice |
| Stephanie Platt | Practitioner |
| Dr Jenny Preston MBE | Consultant occupational therapist |
| Alexander Smith | Postgraduate Student |
| Dr Hannah Spring | Information Specialist |
| Michael Turner | Person with experience of accessing occupational therapy services |
| Ruth Unstead-Joss | RCOT - PSP Coordinator |
| Dr Gill Ward | RCOT – Research and Development Manager |
| Dr Jo Watson | Assistant Director: Education and Research, PSP Strategic Lead |
| Dr Phillip Whitehead | Academic researcher |
Reference
https://www.thinklocalactpersonal.org.uk/Browse/Informationandadvice/CareandSupportJargonBuster/#Carer (accessed on 15 May 2019)
(1) A person who provides unpaid support to a partner, family member, friend or neighbour who is ill, struggling or disabled and could not manage without this help. This is distinct from a care worker, who is paid to support people. (TLAP)