Foot Health PSP Steering Group Terms of Reference

Introduction to the James Lind Alliance and priority setting

The James Lind Alliance (JLA) is 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 Priority Setting Partnerships (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 which might not otherwise be suggested or prioritised.

The role of the PSP is to identify questions which have not been answered by research to date, and to then prioritise these. The first stage is an online survey to patients, carers and clinicians, asking for unanswered questions about Foot Health. These questions will then be assessed to check they are in scope for the PSP and checked and verified as true uncertainties. An interim prioritisation exercise then takes place to shortlist the uncertainties, before a priority setting workshop is then convened where participants debate and finally arrive at a Top 10 list of shared unanswered questions, or uncertainties, which are most important to them.

The aim is then to turn these uncertainties into research questions and for members of the Steering Group to work with researchers and research funders to obtain funding for that research.

All uncertainties are displayed on the JLA website. Further details about the JLA and PSPs are also on the JLA website.

The Foot Health Priority Setting Partnership

The background and wider aims and responsibilities of the Foot Health PSP are set out in the JLA Foot Health PSP Protocol.

About the Steering Group

The Steering Group is responsible for overseeing and guiding the activity of the PSP. Drawing on members’ expertise and networks, the Steering Group will help encourage membership to the wider PSP and, where capacity permits, will carry out the practical work needed to collate the interim and final priority setting exercises. The Steering Group is also responsible for helping raise awareness of the final Top 10 uncertainties, including among research funders.

Membership of the Steering Group includes individuals and representatives of organisations which can reach and advocate for patients and clinicians, as well as the JLA Adviser. Steering Group members with direct relevant experience as patients, carers or healthcare professionals are invited to participate in the priority setting exercise.

Role of Steering Group meetings

Steering Group members are asked to contribute, as a minimum, their expertise and their time. Steering Group members are asked to adhere to the following principles:

an interest in the initiative and outcomes being pursued in the project
a broad understanding of project management issues and the approach being adopted
commitment to working with other members respectfully and constructively
advocacy for the project’s outcomes.

Specifically, Steering Group members will:

attend regular telephone conference calls. To be effective in its decision making, each meeting should be represented with at least 2 clinicians and 2 patients.
attend face to face meetings, or 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
share networks and contacts for membership of the PSP
publicise the initiative to potential partners to encourage them to join the PSP. 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
have oversight of the collection of treatment 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
verify the shortlisted questions to be taken to the final priority setting workshop
participate in the final priority setting exercise (if job role qualifies them to represent the views of patients, carers or clinicians). This is the one-day workshop which 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
be involved in the development of the Top 10 Foot Health treatment uncertainties into research questions for funders
work with the National Institute for Health Research Evaluation, Trials and Studies Coordinating Centre (NETSCC) and other research funders to develop the priorities into research questions.
It is agreed that for this Foot Health PSP, two patient/carer representatives and two healthcare professionals will need to be present in order for Steering Group meetings to go ahead and for decisions to be made. Researchers are not able to vote unless they also work as clinicians.

Declaring interests

Steering Group members are asked to declare any interests relevant to the Foot Health PSP. The JLA provides an example form, and the interests of each member will be listed and 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.

PSP Coordination

The PSP will be chaired by Dr Patricia Ellis JLA Adviser. Dr Andrea Graham is responsible for the coordination and administration of the PSP. This includes making arrangements for 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 circulated within two weeks.

Timescales

The Foot Health PSP first Steering Group meeting will be in April, 2018. We propose that the final meeting prioritisation takes place in Summer, 2019 [date to be agreed].

Key contacts

PSP Chair: Dr Patricia Ellis JLA adviser
PSP Lead: Professor Chris Nester
PSP Co-ordinator: Dr Andrea Graham