This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance Rapid Review Methodology Priority Setting Partnership. The Steering Group coordinates the Priority Setting Partnership (PSP) and organises its activities.
The background and wider aims and responsibilities of the Rapid Review Methodology PSP are set out in its Protocol.
Introduction to the James Lind Alliance and priority setting
The JLA is a non-profit making initiative, established in 2004. It brings patients, carers and clinicians together in PSPs. These PSPs identify and prioritise the evidence uncertainties, or ‘unanswered questions’, that they agree are the most important for research in their topic area. PSPs have focused traditionally on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. For example, JLA PSPs have been recently conducted to determine unanswered questions around trial methodology, specifically regarding the recruitment1 and retention2 of participants. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians. The National Institute for Health and Care Research (NIHR – www.nihr.ac.uk) funds the infrastructure of the JLA that oversees the processes for PSPs, based at the Wessex Institute, University of Southampton.
The Rapid Review Methodology Priority Setting Partnership
Membership of the Steering Group
The Steering Group membership must be a balance of patients, clinicians and researchers.
Role of Steering Group members
The Steering Group will agree the resources, including time and expertise, that they can contribute to each stage of the process, with input and advice from the JLA. Steering Group members are asked to contribute, as a minimum, their time and expertise. Specifically, Steering Group members will:
- Attend regular telephone/video conference calls. To be effective in its decision making, each meeting should be represented with at least a clinical, public and research elements;
- If unable to attend, submit comments ahead of the meeting. Where a Steering Group member is unable to attend a meeting (virtual), decisions made at the meeting will be respected;
- Respond promptly with feedback on project materials by responding to emails;
- Advise on and suggest potential partners to promote, support and champion the PSP;
- Share networks and contacts for potential PSP partners to ensure a wide and representative group of the public, researchers and clinicians;
- Publicise the initiative to potential partners to encourage them to participate, promote, support and champion the PSP;
- Have oversight of the collection of unanswered recruitment questions from the public, researchers, clinicians and existing literature;
- Oversee and lend expertise to the data management process, including agreeing the scope and process for data-checking;
- Agree the interim priority setting stage;
- Verify the shortlisted questions to be taken to the final priority setting workshop;
- Agree the format of the final workshop, which is likely to take place online;
- Possibly participate in the final priority setting workshop (if role qualifies them to represent the views of the public, researchers or clinicians), although the final workshop may be made up of individuals not already involved in the Steering Group. This workshop/these workshops bring(s) together the public, researchers and clinicians together to debate, rank and agree a final Top 10.
- Agree proposed stakeholder involvement/groups to ensure equitable representation across stakeholder groups for the face-to-face (virtual) consensus meeting;
- Be involved in the transformation of the uncertainties into research questions;
- Work with the HRB, PHA of Northern Ireland, the National Institute for Health and Care Research and other research funders to prioritise the funding of the top 10 unanswered questions;
- Maintain confidentiality during all phases of the project.
Specific Roles
Chair: The PSP will be chaired by Professor Declan Devane and the JLA is represented on the Steering Group to ensure that JLA principles are upheld. A JLA Adviser Chairs and runs the final priority-setting workshop and, acting as a neutral facilitator, will ensure that the process is followed in a fair, transparent way, with equal input from patients, clinicians and researchers and their representatives.
Lead: Professor Declan Devane is the lead for the PSP. The Lead works closely with the JLA and the PSP coordinator to champion the PSP and ensure it is successfully promoted, completed and disseminated to funders.
Coordinator: Dr Claire Beecher 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 Claire Beecher is also 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.
Declaring interests (as per Interests and Privacy form completed by Priority III Steering Group members)
Steering Group members are asked to declare any interests relevant to the Rapid Review Methodology 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 Chair, the Coordinator and the JLA 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 Rapid Review Methodology PSP first Steering Group meeting was on 08 July 2020. We propose that the final priority-setting workshop takes place in May 2021.
Steering Group members
| Person | Affiliation | Role in SG |
| Declan Devane | Evidence Synthesis Ireland/Cochrane Ireland | PSP Lead/ Chair |
| Claire Beecher | Evidence Synthesis Ireland/ HRB-TMRN | Representing frontline research/ PSP Deputy Chair |
| Elaine Toomey | Evidence Synthesis Ireland/ Cochrane Ireland | Representing frontline research |
| Nikita Burke | Evidence Synthesis Ireland/ Cochrane Ireland | Representing frontline research |
| James Thomas | Evidence for Policy and Practice information (EPPI) Centre/ University College London | Rapid review expertise |
| Andrea Tricco | Unity Health Toronto | Rapid review expertise |
| Andrew Booth | University of Sheffield School of Health and Related Research (ScHARR) | Rapid review expertise |
| Patricia Healy | NUI Galway | Priority-setting expertise |
| Beccy Maeso | James Lind Alliance | Priority-setting expertise |
| Caroline Whiting | James Lind Alliance | Priority-setting expertise |
| Derek Stewart | National Institute for Health and Care Research (NIHR) Clinical Research Network Associate Director for Patient and Public Involvement | Priority-setting expertise/ Representing public and patients |
| Joan Jordan | European Patients' Academy (EUPATI)/ Irish Platform for Patient Organisations, Science and Industry (IPPOSI) | Priority-setting expertise/ Representing public and patients |
| Andrew Worrall | Priority-setting expertise/ Representing public and patients | |
| Jim Elliott | Public Involvement Lead, Health Research Authority | Priority-setting expertise/ Representing public and patients |
| Theresa Tierney | Primary Care PPI Group, Health Research Board Primary Care Clinical Trials Network Ireland | Representing public and patients |
| Maureen Smith | Cochrane Consumers Executive |
Representing public and patients, Evidence synthesis expertise |
| Bronagh Blackwood |
Queen's University Belfast |
Representing frontline research |
| Teresa Maguire |
Health Research Board (Ireland) |
Representing funders |
| Melissa Kampman |
Health Canada |
Representing policymakers |
| Benny Ling |
Health Canada |
Representing policymakers |
| Chantelle Garrity |
Ottawa Hospital Research Institute/Cochrane Rapid Review Methods Group |
Evidence synthesis/rapid review experience |
| Detti Nurandi |
Cochrane Indonesia |
Low- middle income country perspective |
| Sandra Aitcheson |
Public Health Agency (NI) |
Representing funders |
| Catherine Gill |
Health Research Board (Ireland) |
Representing funders |
| Christopher Gravel* |
Health Canada |
Representing policymakers |
| Matthew Westmore* |
NIHR (National Institute for Health and Care Research) |
Evidence synthesis/rapid review experience |
*until January 2021