Medically Not Yet Explained Symptoms PSP Terms of Reference

This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance Medically Not Yet Explained Symptoms (MNYES) Priority Setting Partnership. The Steering Group coordinates the Priority Setting Partnership (PSP) and organises its activities.

The Steering Group must include representatives of patients, carers and clinicians. These may be members of a charity or professional organisation within the area of the PSP. Members will bring with them knowledge of the condition, an understanding of the patient, carer and clinician populations and access to networks of patients, carers and clinicians. Members will need to be fully engaged in the process and have the time to carry out the work involved.

The background and wider aims and responsibilities of the Medically Not Yet Explained Symptoms 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 patients, carers and clinicians to work together to agree priorities for health research. The JLA facilitates PSPs in particular health areas.

Each PSP consists of patients, carers and their representatives, and clinicians, and is led by a Steering Group. Collaboration between patients, carers and clinicians to set the research agenda is extremely rare, but 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 patients, carers and clinicians, often via an online survey, for unanswered questions about Medically Not Yet Explained Symptoms. 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 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.

All JLA 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 Medically Not Yet Explained Symptoms Priority Setting Partnership

Membership of the Steering Group

The Steering Group membership must be a balance of patients, carers and professionals.

It is agreed that for the Medically Not Yet Explained Symptoms PSP, 2 of patient/carer representatives and 2 of healthcare professionals will need to be present in order for Steering Group meetings to go ahead and for decisions to be made.

Role of Steering Group members

Steering Group members are asked to contribute, as a minimum, their expertise and their 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 stakeholder are involved in the PSP process
• Equality: patients, carers and clinicians, 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 based for MNYES 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 patients, carers and clinicians) and emailing contacts to invite them to participate
• Publicise and participate in an initial awareness meeting if this takes place
• Take part in 6 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 in order to keep momentum around the PSP and to maintain their 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 patients, carers, clinicians 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 patients, carers and clinicians together to debate, rank and agree a final Top 10. It is only attended by patients, carers and the healthcare professionals 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.

Specific Roles

Chair: The PSP will be chaired by Jonathan Gower, a JLA Adviser. The JLA Adviser also Chairs and runs the final 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, carers and clinicians and their representatives.

Dr. Margot Metz will be the Dutch Chair and will be trained by Jonathan Gower.

Lead: Christina van der Feltz-Cornelis is the lead for the PSP. The Lead 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: Sally Brabyn and Natalie Smith are 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.

Dr. Linh Nguyen is the coordinator of the Dutch PSP group.

Information Specialist: Danielle Varley 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 may not be essential. The outputs delivered by the Information Specialist will be approved by the Steering Group.

Dr. Iman Elfeddali is the information specialist of the Dutch group. She will be closely involved together with Dr. Linh Nguyen in translating the English material and the survey.

Declaring interests

Steering Group members are asked to declare any interests relevant to the Medically Not Yet Explained Symptoms 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 Medically Not Yet Explained Symptoms PSP first Steering Group meeting will be on 19th March 2020. We propose that the final priority-setting workshop takes place in March 2021.

Steering Group members