This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance (JLA) adult critical care in ICU, lower resourced health systems Priority Setting Partnership (PSP).
In line with JLA principles, this Steering Group will include representatives of patients, carers and clinicians. These may be people with lived experience and individual health professionals working directly 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 Adult Critical Care in ICU Lower Resourced Health Systems PSP are set out in the Protocol.
Introduction to the James Lind Alliance and priority setting
The JLA is a non-profit making initiative which enables patients, carers and clinicians to work together to identify and agree priorities for research. 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 PSP has three key stages; two surveys, followed by a priority setting workshop. The PSP results in an agreed list of top 10 prioritised research questions about adult critical care in ICU lower resourced health systems. The aim of PSPs are to highlight the important areas of research to the research and funding community and to work with them to develop the priorities into researchable questions.
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/.
Membership of the Steering Group
The Steering Group membership must include patients, carers and professionals. This PSP will have 12 members (six patient- carer- community representatives, and six clinicians). It is agreed that for the PSP, 3 patient/carer representatives and 3 healthcare professionals will need to be present for Steering Group meetings to be quorate.
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 supportively, respectfully and constructively and aiming to ensure the full range of patient, carer and clinical stakeholders 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. Their opinions are treated equally and differences in opinions are respected
- Fairness and transparency: declaring any personal interests, and ensuring decisions and activities are documented openly
- Evidence based: ensuring the work of the PSP recognises the existing knowledge based for Adult Critical Care in ICU Lower Resourced Health Systems and contributes to this through the PSP’s evidence checking and open publication of information from the PSP
- Participating in a PSP as a Steering Group member will be on a voluntary basis at all times. It will not be defined as employment at any time throughout the PSP duration.
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 patients, carers and clinicians) and emailing contacts to invite them to participate
- Take part in Steering Group meetings/teleconferences. It is usual for a Steering Group to meet either by teleconference 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, Steering Group members are requested to 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
- 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 workshop brings patients, carers and clinicians together to debate, rank and agree a final Top 10. Participants are patients, carers and the healthcare professionals or support workers who actively work with them. Typically, not all members of the Steering Group take part in the workshop, 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 public and academic communities
- 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 Toto Gronlund, an independant 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, carers and clinicians and their representatives.
Coordinators: Felix Limbani and Abi Beane 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.
Information Specialist: Subhasish Nayak & Emma Donley are the Information Specialists for the PSP. Additional Information Specialists may be identified during 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 coordinators. Any concerns related to conduct should be raised with the PSP coordinators and/or the JLA Adviser.
Declaring interests
Steering Group members are asked to declare any interests relevant to the Adult Critical Care in ICU Lower Resourced Health Systems PSP.
Timescales
The Adult Critical Care in ICU Lower Resourced Health Systems PSP first Steering Group meeting will be on 3rd May 2023. We propose that the priority setting workshop takes place in December 2023, [TBC].