This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance Children’s Cancer 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 Children’s Cancer 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 professionals 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 professionals, and is led by a Steering Group. Collaboration between patients, carers and professionals 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 professionals, often via an online survey, for unanswered questions about Children’s Cancer. These questions are then assessed to check they are in scope for the PSP, and are checked and verified as true uncertainties (unanswered questions). 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.
The 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 Children’s Cancer Priority Setting Partnership
Membership of the Steering Group
The Steering Group membership is made up of patients, parents, and third sector partners who represent them alongside a range of professionals.
It is agreed that for the Children’s Cancer PSP, three patient/parent representatives and eight professionals representing a range of professions 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 professional stakeholders are involved in the PSP process
- Equality: patients, carers and professionals, 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 Children’s Cancer and contributes to this through the PSP’s evidence checking and open publication of information from the PSP.
Members of the Steering Group will:
- Publicise the initiative to potential partners.
- Publicise and participate as appropriate in any initiatives to raise awareness of the PSP.
- Take part in all Steering Group meetings/teleconferences. It is usual for a Steering Group to meet three times a year face-to-face and three or four times a year by telephone conference 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 questions from patients, carers, professionals 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 professionals together to debate, rank and agree a final Top 10. It is only attended by patients, carers and the professionals 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 questions and the final prioritised list of questions are supplied to the JLA, for publication on the JLA website.
- Help publicise the final top 10 priorities 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 professionals and their representatives.
Lead: Rachel Hollis 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.
Coordinators: Faith Gibson, Bob Phillips and Susie Aldiss are responsible for the coordination and administration of the PSP with administrative support from Angela Stewart. 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: Susie Aldiss is the Information Specialist for the PSP. 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. Susie has content knowledge in the subject area of the PSP and will be well supported by the Steering Group in areas where this is required. The outputs delivered by the Information Specialist will be approved by the Steering Group.
Declaring interests
Steering Group members are asked to declare any interests relevant to the Children’s Cancer PSP. The JLA provides a form to complete, 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. Steering Group members who are also researchers may participate in the priority setting if they declare their interests.
Timescales
The Children’s Cancer PSP first Steering Group meeting will be on 11th October 2019. We propose that the final priority-setting workshop takes place in September 2021.
Steering Group members
James Lind Alliance Adviser/Chair:
- Jonathan Gower
Coordinating team:
- Bob Phillips, Paediatric Oncology Consultant, Leeds Children’s Hospital and University of York
- Susie Aldiss, Research Fellow, University of Surrey
- Faith Gibson, Professor of Child Health and Cancer Care, University of Surrey and Great Ormond Street Hospital for Children NHS Foundation Trust
Information specialist:
- Susie Aldiss, Research Fellow, University of Surrey
Administrative support for the PSP:
- Angela Stewart, Project Manager, CCLG
Patient/Parent representatives:
- Scott Crowther
- Angela Polanco
- Loveday Langton
- Alex Brownsdon
Professional representatives:
- Rachel Hollis, PSP Lead, Leeds Children’s Hospital
- Ashley Gamble, Chief Executive Officer, CCLG
- Wendy Tarplee-Morris, Research Manager and Co-founder, The Little Princess Trust
- Penelope Hart-Spencer, Health Play Specialist, The Christie, Manchester
- Jess Morgan, Trainee Paediatric Oncologist & NIHR Clinical Lecturer in Paediatric Oncology, Leeds Children’s Hospital/ University of York
- Julia Chisholm, Consultant in Paediatric and TYA Oncology, The Royal Marsden NHS Foundation Trust
- Simon Parke, Consultant Paediatrician, Royal Devon and Exeter NHS Foundation Trust
- Jenni Hatton, Children's Cancer Network Pharmacist, Queen's Medical Centre, Nottingham
- Helen Morris, Matron, Lead Nurse Southwest Paediatric Oncology, Bristol
- Louise Henry, Senior Specialist Dietitian (Paediatrics and TYA), The Royal Marsden NHS Foundation Trust
- Rosa Reed-Berendt, Clinical Psychologist, Great Ormond Street Hospital for Children NHS Foundation Trust
- Sue Picton, Consultant Paediatric and Adolescent Oncologist, Leeds Children’s’ Hospital/ Martin House Hospice
- Rachel Dommett, Consultant in Paediatric Leukaemia and Aftercare, Bristol Royal Hospital for Children
- Martin English, Consultant Paediatric Oncologist, Birmingham Women’s and Children’s NHS Foundation Trust
- Charmaine Jagger, Speech and Language Therapist, The Royal Marsden NHS Foundation Trust
- Helen Hartley, Specialist Paediatric Physiotherapist - Acute Neurosciences/ Oncology, Alder Hey Children’s NHS Foundation Trust
- Helen Gravestock/Sonia Malik, CLIC Sargent Representative, CLIC Sargent, London
- Nigel Hall, Consultant Paediatric Surgeon, University of Southampton
- Dan Saunders, Consultant in Clinical Oncology, The Christie, Manchester
- Keeley McEvoy, Assistant Headteacher, Medical Needs Teaching Service, Leeds Children's Hospital
- David Weller, Professor of General Practice, University of Edinburgh