Cardiomyopathy PSP Steering Group terms of reference

  • Published: 30 May 2023
  • Version: V2.0
  • 8 min read

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.

Each PSP consists of patients, carers and their representatives, and clinicians, and is led by a Steering Group. The Steering Group oversees the activities of the PSP and has responsibility for the activity and the outcomes of the PSP. Collaboration between patients, carers and clinicians to set the research agenda 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 agree which of these are the most important. The first stage is to ask patients, carers and clinicians, often via an online survey, for unanswered questions about cardiomyopathy. These questions are then assessed to check they are in scope for the PSP and are checked to make sure they have not already been answered by research. An interim prioritisation exercise then takes place, where people with an interest in cardiomyopathy choose which questions are most important to them. Finally, there is a priority setting workshop where participants discuss the most important questions and agree a list of the Top 10.

The aim of the PSP is 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 on the JLA website. A flowchart of the PSP process can be seen in the Templates and useful documents section of the JLA website.

The Cardiomyopathy Priority Setting Partnership

The background and aims and responsibilities of the Cardiomyopathy PSP are set out in the JLA Cardiomyopathy PSP Protocol.

This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance (JLA) Cardiomyopathy PSP.

In line with JLA principles, this Steering Group will include representatives of patients, carers and clinicians. These may be people with lived experience, members of a charity or professional organisation or individual health professionals 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.

About the Steering Group

Membership of the Steering Group

The Steering Group membership must include patients, carers and professionals.

It is agreed that for the Cardiomyopathy PSP, 3 patient/carer representatives and 4 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:

  1. 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
  2. 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
  3. Fairness and transparency: declaring any personal interests, and ensuring decisions and activities are documented openly
  4. Evidence based: ensuring the work of the PSP recognises the existing knowledge base for cardiomyopathy 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.

Specifically, Steering Group Members 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 monthly 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.
  • 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 is the one-day workshop that 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, 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.

Schedule of proposed Steering Group Meetings

  • Initial SG meetings
    • Online via Zoom
    • March 2023
    • Two 3 hour meetings
    • Review and agree the draft Steering Group Terms of Reference and the draft PSP protocol.
  • 2nd SG meeting
    • Online via Zoom
    • April/May 2023
    • 2 hours
    • To review the draft survey
  • Monthly
    • Online via Zoom
    • 1 hour per month
    • Manage ongoing business of the PSP.
  • Pre-interim priority setting
    • Online via Zoom
    • August/September 2023
    • 3 hours
    • To finalise the list of questions to be included in the interim priority setting survey.
  • Final priority setting
    • Face-to-face workshop
    • November 2023
    • 1 day
    • Discussion and ranking of most important questions and confirmation of Top 10 researchable questions.

Declaring interests

Steering Group members are asked to declare any interests relevant to the Cardiomyopathy PSP. The JLA provides an example Interests and Privacy 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.

The Steering Group includes membership of patients and carers and clinicians , as individuals or representatives from a relevant group.

Steering Group members

The Cardiomyopathy PSP will be led and managed by the following:

Patient representatives

  • Jenny Moon, Cardiomyopathy UK
  • Marcia Malcolm, Cardiomyopathy UK
  • Sandra Miller, Cardiomyopathy UK
  • Robbie Jones, Cardiomyopathy UK
  • LaRisha Porter, Cardiomyopathy UK
  • Andy Smith, Cardiomyopathy UK

Patient Lead

  • Alison Fielding, Vice President/Patient Focus, Cardiomyopathy UK

Patient family member/Trustee

  • Libby Jarman, Senior Research Physiotherapist, University Hospitals Southampton NHS Trust and University of Southampton/Trustee, Cardiomyopathy UK

Clinical representatives

  • Jayne Partridge, Cardiomyopathy Specialist Nurse, Cardiomyopathy UK
  • Dr Tootie Bueser, RN PhD, Director for Nursing & Midwifery, South East Genomic Medicine Service Alliance, Guy’s & St Thomas’ NHS Foundation Trust and Chief Nurse, North Thames Genomic Medicine Service Alliance UCL Partners /Trustee, Cardiomyopathy UK
  • Ella Field, Research Nurse Inherited Cardiovascular Disease, Great Ormand Street Hospital
  • Helen Alexander, Physiotherapist, St Bartholomew’s Hospital, Barts Health NHS Trust
  • Dr Brian Halliday, Senior Clinical Lecturer at the National Heart and Lung Institute and Consultant Cardiologist at Royal Brompton Hospital
  • Professor Ruth Newbury-Ecob, MB ChB, MD, FRCP, FRCPCH, Consultant Clinical Geneticist, Department of Clinical Genetics, University Hospitals Bristol NHS Foundation Trust
  • Dr Caroline Coats, Consultant Cardiologist, NHS Greater Glasgow and Clyde
  • Pauline Aiston, Specialist Health Psychologist, Adult Congenital Heart Disease (ACHD) Lead for Psychology at the Bristol Heart Institute, University Hospitals Bristol and Western NHS Trust.
  • Dr Jenn Zhang, Clinical Psychologist, Bart’s Heart Centre Psychology Service, St Bartholomew’s Hospital, Barts Health NHS Trust

Specific roles

Chairperson: The PSP will be chaired by Louise Dunford, JLA Adviser. 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.

PSP Leadership: The PSP will be led by Charlotte Gallagher (until May 2023), then Laura Cook (from July 2023). The Lead works closely with the JLA Adviser and PSP coordinator to manage the PSP and ensure it is successfully promoted, completed, and disseminated to funders.

PSP Coordination: The PSP will be co-ordinated by Rebecca Gray. The co-ordinator is responsible for the 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.

Information specialist: The PSP information specialist will be Kristina Staley. 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. 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.

Timescales

The Cardiomyopathy PSP first Steering Group meeting will be in March 2023. We propose that the final priority-setting workshop takes place in November 2023.

The Cardiomyopathy PSP project started in March 2023; with the final Steering Group meeting occurring in March 2024. The Steering group met monthly through the project, with additional sub-group meetings as required.

Initial survey gathering uncertainties took place June/July/August 2023.
Prioritisation survey was conducted in October/November/December 2023.
Final priority setting workshop took place in February 2024

Key contacts

PSP Lead Charlotte Gallagher (until May 2023), Laura Cook (from July 2023) Laura.Cook@cardiomyopathy.org
PSP Co-ordinator Rebecca Gray Rebecca.Gray@cardiomyopathy.org

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 leader. Any concerns related to conduct should be raised with the PSP leader and/or the JLA Adviser.