This document sets out the Terms of Reference for the Steering group of the James Lind Alliance (JLA) Australian Child and Adolescent Cancer - Priority Setting Partnership (PSP).
In line with JLA principles, this steering group will include representatives of:
- Children or adolescents (12 -18 years old) who were diagnosed with cancer between 0-18 years.
- Parents/caregivers of children or adolescents of any age who have had cancer diagnosed with cancer between 0-18 years.
- Health care professionals working with children and adolescents with cancer.
These may be people with lived experience, members of a charity or professional organisation, or individual health care professionals who work within the area of childhood and adolescence cancer. 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.
The James Lind Alliance and Priority Setting Partnerships
The JLA is a non-profit making initiative that enables patients, carers, and clinicians to work together to identify and agree on 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.
Each PSP is led by a steering group who oversees the activities of the PSP and has responsibility for the whole process and the outcomes of the PSP.
The aim of the PSP is to identify areas of research to focus on, to agree and prioritise which of these are the most important, and finally to promote these to relevant funding bodies, researchers, and governments as priority areas to address.
Key stages of the PSP
- The initial stage of the PSP involves asking children and adolescents with cancer, carers, family members, and clinicians/health and social care professionals, via an online survey, for unanswered questions about childhood cancer. 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.
- The next stage involves an interim prioritisation exercise where children and /or adolescents with cancer, carers, family members, and clinicians/health and social care professionals choose which unanswered questions are most important to them.
- Finally, there is a priority-setting workshop where those who are interested in the PSP discuss the most important questions and agree to a list of the Top 10.
Further details about the JLA and PSPs are available on the JLA website.
Membership of the Steering Group
The steering group will include approximately 14 members. The researchers leading the PSP (Natalie Bradford, Alison Bowers, Eden Robertson, and Gayani De Silva) will also join the Steering group meetings, which will be chaired by the JLA Advisor (Suzannah Kinsella).
It is agreed that 50% of the patient/carer and charity representatives and 50% of the healthcare professionals/researchers will need to be present for meetings to be quorate.
Role of Steering group members
Steering group members are asked to contribute, as a minimum, their expertise and their time to ensure that each stage of the process is completed and to be prepared to approach their established contacts and networks.
Members of the Steering group will:
- Take part in steering group meetings/online teleconferences with an estimated 10 meetings to occur over 18 months and to maintain their relationship as a team.
- Publicise the PSP to potential partners. This includes advising on contacts for the PSP (to ensure a wide and representative group of children and adolescents with cancer, carers, family members, and clinicians/health and social care professionals) and emailing contacts to invite them to participate.
- Inform as soon as possible if unable to attend and submit comments ahead of the meeting.
- Respect the decisions made at unattended meetings.
- Respond promptly with feedback on project materials by responding to emails.
- Oversee and lend expertise to the data management process, including agreeing on the scope and process for data-checking.
- Have oversight of the collection of evidence uncertainties from children and adolescents with cancer, carers, family members, clinicians/health and social care professionals, and existing literature.
- 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.
- These are two-half-day workshops (held virtually) that bring children and adolescents with cancer, carers, family members, and clinicians/health and social care professionals together to debate, rank, and agree on a final Top 10 priorities.
- 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.
Other Specific Roles in the PSP
Chair: The PSP will be chaired by Suzannah Kinsella, a 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.
PSP Lead: Natalie Bradford is the lead for the PSP, ensuring that is successfully completed and disseminated to the relevant stakeholders.
PSP Coordinator: Gayani De Silva is responsible for the coordination and administration of the PSP. This includes arranging all meetings and workshops, and ensuring that:
- Agenda items are discussed with the steering group and meetings are appropriately held over
- Meeting documents are available at least a week before meetings
- Meeting notes are reviewed by the Chair, circulated within two weeks, and reviewed and agreed upon at the next meeting.
- A Doodle poll will be used to set meeting dates and they will be set at least 4-weeks in advance during the PSP
- Advise the Steering group on data management and analysis strategies and agree to these with the group
- Review and analyse the data collected
- Review existing evidence
- Develop the long list of questions, under the guidance and assurance of the Steering group
- Coordinate the interim prioritisation setting and the final stage workshop under the guidance and assurance of the steering group
Code of Conduct
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 on children and adolescent cancer and contributes to this through the PSP’s evidence checking and open publication of information from the PSP.
In addition, all Steering Group Members must work to high personal and professional standards and 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.
Declaring interests
Steering group members are asked to declare any interests relevant to the Australian child and adolescent cancer PSP. The interests of each member will be shared among the group 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. In addition to disclosing their interest, steering group members will have the opportunity to indicate their agreement to be named publicity with reference to the PSP.