Australian Child and Adolescent Cancer PSP protocol

Purpose of the PSP and background

The purpose of this protocol is to set out the aims, objectives, and commitments of the Australian Child and Adolescent Cancer - Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles.

The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. The Steering Group will review the protocol regularly and any updated version will be sent to the JLA.

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 key stakeholders agree are the most important for research in their topic area.

What are evidence uncertainties?

An ‘uncertainty’ is used to refer to an individual’s unanswered questions – something that they are uncertain about, that has been reframed as a researchable question. The JLA defines an ‘evidence uncertainty’ as when:

• No up-to-date, reliable systematic reviews of research evidence addressing the uncertainty, or an individual’s unanswered question, exists.
• up-to-date systematic reviews of research evidence show that uncertainty exists.

A PSP aims to identify the top 10 research priorities that can be used to drive the most meaningful research. The process helps to ensure that those who fund health research are aware of what really matters to patients, carers, and health care professionals. The National Institute for Health and Care Research (NIHR) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.

This PSP focuses on children and adolescents diagnosed with cancer in Australia. Presently in Australia, more than 1000 children and adolescents are diagnosed with cancer each year and projections indicate an increase to 1060 cases annually by 2035. Childhood cancer remains the second leading cause of death in children after childhood injuries. Notably, there has been a consistent rise in 5-year disease-free survival rates in Australian children, increasing from 73% in 1986-1991 to 86% in 2012-2018. However, the aftermath of cancer and the adverse effects of treatments persist for approximately 70% of childhood cancer patients, impacting them well into adulthood and leading to long-term consequences stemming from both the disease and the effects of treatments. This imposes a substantial burden not only on the child with cancer but also on their family, caregivers, the healthcare system, and the economy as a whole.

Children and adolescents with cancer must receive evidence-based cancer-related care and timely interventions to uphold and enhance their health. Medical advancements play a pivotal role in improving diagnosis, treatment outcomes, quality of life, and survivorship. Scientific evidence contributes to the formulation of health policies and can have positive economic implications. Potential disparities between current research endeavours and what is perceived as meaningful and pertinent by patients and clinicians may hinder the translation of knowledge into clinical practice. This mismatch can lead to inefficiencies in clinical uptake and knowledge translation, resulting in the wastage of time, financial resources, and valuable knowledge. By involving stakeholders such as patients, caregivers, and clinicians in the process of identifying research priorities, PSPs ensure that research efforts are aligned with the needs and concerns of those directly affected by childhood cancer. This leads to more relevant and patient-centred research, which can ultimately result in improved outcomes fostering the development of effective and tailored strategies in childhood cancer care and research.

The identification of research priorities for childhood cancer in the UK and Canada through the JLA approach has provided valuable insights into addressing various aspects of the disease. However, discrepancies in the identified research uncertainties have resulted in two distinct sets of research priorities that lack alignment between the two regions. These disparities suggest differences in perspectives, priorities, or contextual factors influencing the research agendas in each country. Despite covering all types of childhood cancer and addressing a broad scope of research areas from pre-diagnosis to end-of-life care, the divergent priorities underscore the complexity and variability in addressing childhood cancer across different healthcare systems, populations, and contexts. Australia's unique geography, dispersed population distribution, multicultural population, and variations in healthcare access and availability, which differ from those in the UK and Canada, are likely to influence the research priorities that are most relevant to our cohort. While having publicly funded healthcare systems that aim to provide universal access to medical services with a mix of public and private healthcare providers, the UK, Canada, and Australia share common challenges such as addressing healthcare disparities, managing healthcare costs, and ensuring the quality of care as separate countries. However, differences exist in areas such as funding mechanisms, governance structures, and the organisation of primary care services. Despite these variances, there may still be valuable insights and lessons to be learned from knowing the context of childhood cancer research. Australia's distinctive healthcare system, shaped by its vast landmass comparable to Europe or North America but with a significantly smaller population, results in a highly centralised delivery of childhood cancer care and research. The majority of specialist services are located in large metropolitan areas, potentially disadvantaging about 8.3 million people, or approximately 30% of the population, who reside in regional and remote areas. Moreover, one in ten Australians live in small towns with populations under 10,000, where health services are limited.

Considering Australia's diverse and multicultural society, it is essential to acknowledge the influence of cultural and social contexts on the perceived significance of different research topics in childhood cancer. Australia's population comprises immigrants from various regions worldwide, each bringing their own perspectives on aspects such as quality of life versus survival outcomes and the importance of specific treatment side effects in childhood cancer care. It is important to consider the distinct healthcare needs and disparities experienced by the First Nations people as well. Socioeconomic factors further contribute to differences in access to healthcare, levels of health awareness, and ultimately, health outcomes within the country. This diversity can lead to varied perspectives on healthcare needs and priorities, including those related to childhood cancer. This may influence research priorities, such as focusing more on palliative care and quality of life in cultures where this is highly valued as well as some being more concerned with long-term effects that impact quality of life, while others may prioritise the immediate efficacy of the treatment.

Given the significant factors, our team advocates for the importance of undertaking a child and adolescent cancer PSP with an Australian population.

By bringing together a diverse range of voices, including children and adolescents with cancer and their families, caregivers, and clinicians, this PSP will drive research efforts that are focused on areas that truly matter and have the potential to make a meaningful impact on the lives of children and adolescents affected by cancer. By actively involving patients and caregivers in the research priority-setting process, the project promotes empowerment, collaboration, and shared decision-making, ultimately leading to more effective and impactful research outcomes. Overall, the PSP serves as a vital platform for driving positive change in childhood cancer research and care, facilitating greater alignment between research efforts and the needs of those they aim to serve.

This PSP is funded through the Queensland University of Technology (QUT) and is led by researchers from the QUT and the University of New South Wales (UNSW), in partnership with a committed Steering Group that represents consumers, clinicians, patient advocacy organisations, researchers and health care professionals from across Australia.

The first Steering Group meeting took place on 26th February 2024, and we propose that the final priority-setting workshop will take place in March 2025.

Aims, objectives and scope of the PSP

The aim of the Australian Child and Adolescent Cancer PSP is to identify the unanswered questions about child and adolescent cancer from patient, family, carer, and clinical perspectives and then prioritise those that patients, families, carers, and clinicians agree are the most important for research to address.

The objectives of the PSP are to:

• Equally work with children and adolescents, their parents, siblings, and carers impacted by cancer and the health care professionals who deliver childhood cancer care to identify uncertainties relating to their lived experience about childhood and adolescence cancer in Australia.
• To agree by consensus on a prioritised list of those uncertainties, answerable by research
• To publicise the results of the PSP and the process
• To take the results to research commissioning bodies to be considered for funding.

This PSP aims to identify the evidence uncertainties from individuals (including children and adolescents) who were diagnosed with cancer or a brain tumour as a child or adolescent (up to their 19th birthday), their parents/ carers/relatives, and the clinicians/health and social care professionals who provide cancer care. The age of 0-18 years (up to their 19th birthday) is chosen as this is the age range where individuals are treated in Australian paediatric oncology settings.

Ensuring that children and adolescents have a voice in this collaboration is important. Therefore, children of any age can participate in the project. Individuals can answer survey questions themselves, or with the assistance of a parent/carer/relative. If an individual indicates that they are aged under 13 years, they will be prompted to ask their parent/carer/relative over the age of 18 years to assist them. Appropriate methods to engage with children and adolescents may include focus group discussions, photo voice (images or other visual material to represent their experiences), and storyboards (writings or images). These approaches ensure that younger participants can contribute their perspectives through appropriate representation while maintaining ethical considerations and safeguarding their interests within the research process.

The scope of the Australian Child and Adolescent Cancer PSP is defined to include:

• All types of cancer and brain tumour
• Questions related to concepts along the continuum of cancer including:
  
  • Cancer prevention (identification of risks, relapses, genomics)
  • Cancer screening and diagnosis
  • Treatment (access, referrals, side effects)
  • End of treatment, follow-up cancer care, relapses,
  • Cancer survivorship and late effects
  • Palliative care, end-of-life care
  • Physical, psychological, emotional, social, financial and spiritual aspects

Questions can be about any aspect of cancer in children and adolescents along the care pathway. It will be a very broad remit, and decisions may need to be made by the Steering Group to focus the scope of the PSP depending on what questions are submitted. Uncertainties concerning relevant research questions will be handled on a case-by-case basis by the Steering Group. The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process.

The PSP will exclude questions about cancer in individuals who are 19 years and older at the time of initial diagnosis.

Collaboration with the Paediatric Bone Marrow Transplant – Priority Setting Partnership (BMT PSP)

The Australian Child and Adolescent Cancer PSP recognises the importance of collaboration with the BMT PSP in advancing research and improving outcomes for young people with cancer. This collaboration aims to enhance the efficiency and impact of our respective priority-setting initiatives.

Key aspects of our collaboration include:

• Identification and engagement of shared stakeholders, including health care professionals, and patient representatives, to maximise participation and input across both initiatives.
• Jointly approaching partner organisations to leverage resources and amplify outreach efforts, ensuring comprehensive engagement of stakeholders from various sectors.
• Joint communication and outreach activities to raise awareness about our initiatives and encourage participation from relevant stakeholders.
• Coordination of efforts in survey dissemination and data collection to streamline processes and avoid duplication of efforts.

This collaboration represents a commitment to leveraging our resources, expertise, and networks to collectively address research priorities that will have a meaningful impact on childhood and adolescent cancer care and outcomes. By working together, both PSPs seek to optimise the use of available resources and facilitate a more comprehensive approach to setting research priorities in childhood cancer.

The Steering Group

The Steering Group includes membership of patients, carers patient advocacy organisation representatives, researchers, and health care professionals. The role of the Steering Group is to oversee the PSP, ensuring that it is delivered in a timely way and adheres to the JLA’s key principles of transparency, inclusion/exclusion, equality of voice, and use of the existing evidence base. The Steering Group will ensure that the process from the initial survey to the identification of the top 10 priorities is documented, open and transparent and entirely determined by the responses received from children/adolescents with cancer, their family members/carers and health care professionals and the review of the existing evidence base; members of the Steering Group have no influence on setting priorities either as individuals or representatives of organisations.

The Australian Child and Adolescent Cancer PSP will be led and managed by a Steering Group involving the following:

Patient and carer representative/s

• Anitta Watts - Lived experience, Victoria (Parent)
• Clarissa Schilstra - Lived experience, NSW (Childhood cancer experience: childhood and adolescent cancer researcher)
• Hazel Harden - Lived experience, QLD (Parent)
• Helen Stratton - Lived experience, QLD (Parent)
• Janine Cawthray - Lived experience, QLD (Parent)
• Leesa Kerr - Lived experience, Victoria (Parent)
• Lucy Francazio - Lived experience, Victoria (Parent)
• Lucy Jones - Lived experience, NSW (Parent)
• Ozge Akdag - Lived experience, Victoria (Childhood cancer experience)
• Santhosh Payal - Lived experience, NSW (Parent)
• Sheila Patel - Lived experience, Victoria (Parent)

Clinical representative/s

• Amanda Carter - Allied Health Clinical Lead (Oncology), Queensland Children’s Hospital, QLD
• Claire Radford -  Allied Health Clinical Lead (Oncology) & Educator (Palliative Care), Queensland Children’s Hospital, QLD
• Eliza Courtney - Research Genetic Counsellor, Children’s Cancer Institute, NSW
• Jessica Nicholson - Nurse Educator and QPPHON Co-Chair, Queensland Children’s Hospital, QLD
• Jordana McLoone - Deputy Director, Behavioural Sciences Unit, UNSW Sydney and Kids Cancer Centre, Sydney Children's Hospital, NSW
• Liz Darch - Clinical Nurse Manager Perth Children’s Hospital, WA
• Maria Kirby - Paediatric Oncologist, Women's and Children's Hospital, SA
• Maria McCarthy - Psycho-oncology clinician, Children’s Cancer Centre, Royal Children’s Hospital & Murdoch Children’s Research Institute (MCRI) &ANZCHOG as Chair-Psycho-Oncology, VIC
• Mary McGowan - OAM International Childhood Cancer Advocate, Australia
• Neevika Manoharan - Paediatric Haematologist/Oncologist, Kids Cancer Centre, Sydney Childre's Hospital, NSW
• Meera Warby - Research Genetic Counsellor, Children's Cancer Institute, NSW
• Siona Hardy - Executive Director Impact and Youth Cancer Service – Canteen, Australia
• Ursula Sansom-Daly - Clinical Psychologist, Sydney Youth Cancer Service, Prince of Wales/Sydney Children's Hospitals, NSW; and Director, Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children's Hospital, NSW

Researchers

Jason Pole - Researcher, Queensland Digital Health Centre, University of Queensland, QLD

PSP Team

• Suzannah Kinsella - JLA Adviser and Chair of the Steering Group
• Natalie Bradford - PSP Lead, Queensland University of Technology, QLD
• Eden Robertson - Researcher – University of New South Wales, Sydney
• Allison Bowers - Researcher Queensland University of Technology, QLD
• Joanne Cummings - Senior Research & Evaluation Officer, Redkite, Australia
• Gayani De Silva - PSP Coordinator, Queensland University of Technology, QLD

James Lind Alliance Adviser and Chair of the Steering Group: Suzannah Kinsella

PSP Leads: Natalie Bradford, Professor and Program Lead, Children and Young People, Cancer and Palliative Care Outcomes Centre, Queensland University of Technology

PSP coordinator: Gayani De Silva, PhD Candidate, Cancer and Palliative Care Outcomes Centre, Queensland University of Technology

The Steering Group will agree the resources, including time and expertise that they will be able to contribute to each stage of the process, with input and advice from the JLA.

Partners

Organisations including the communities of children and adolescents and their families, friends and carers impacted by cancer, as well as children and youth cancer health advocates will be invited to be involved with this PSP as partners. It is important that any individuals, virtual communities, and organisations who can reach and advocate for children and adolescents with cancer, or organisations affiliated with healthcare professionals that provide cancer care to children and adolescents in Australia are invited to contribute to the PSP. Partners are organisations or groups who will commit to supporting the PSP, promoting the process, and encouraging their represented groups or members to participate. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP.

Partners from across Australia represent the following groups:

• A child/adolescent or any individual who has been diagnosed with cancer as a child or adolescent (0-18 years).
• Parents/carers and relatives of children and adolescents who have been diagnosed with cancer.
• Health and social care, peer support, and non-governmental organisational personnel who work with children and adolescents who have cancer.

The following partner organisations will be invited to join our PSP.

• BrainChild
• Bella the Brave
• Camp Quality
• Canteen
• Children's Cancer Foundation
• Children’s Cancer Support
• Cooper Rice-Brading’s Foundation
• Cure Brain Cancer Foundation
• Human Genetics Society of Australasia
• Juiced TV
• Kid's Cancer Project
• Kids with Cancer Foundation
• Leukaemia Foundation
• My Room Children's Cancer Charity Ltd
• Neuroblastoma Australia
• Peace of Mind Foundation
• Rare Cancer Australia
• Redkite
• Robert Connor Dawes Foundation
• Spark of Gold
• Starlight Children’s Foundation
• Australian & New Zealand Children’s Haematology/Oncology Group
• Australia and New Zealand Sarcoma Association
• Clinical Oncology Society of Australia
• Cancer Council Australia
• Children’s Cancer Institute
• Palliative Care Australia

Exclusion criteria

Some organisations may be judged by the JLA or the Steering Group to have conflicts of interest. These may be perceived to potentially cause unacceptable bias as a member of the Steering Group. As this is likely to affect the ultimate findings of the PSP, those organisations will not be invited to participate. It is possible, however, that interested parties may participate in a purely observational capacity when the Steering Group considers it may be helpful.

The methods the PSP will use

This section describes a schedule of proposed steps through which the PSP aims to meet its objectives. The process is iterative and dependent on the active participation and contribution of different groups. The methods used in any step will be agreed through consultation with the Steering Group members, guided by the PSP’s aims and objectives. More details of the method are in the guidebook section of the JLA website where examples of the work of other JLA PSPs can be seen.

Step 1: Identification and invitation of potential partners

Potential partners will be identified through a process of peer knowledge and snowballing techniques harnessing the Steering Group members’ networks. Potential partners will be contacted via email or telephone and informed of the establishment and aims of the Australian Child and Adolescent Cancer PSP. They will be asked for their preferences of how they would like to be involved. Partners will have the opportunity to participate as much or as little as they like and be supported in any promotional endeavours such as webinars, conference presentations, newsletter content, and videos.

Step 2: Awareness raising

PSPs need to raise awareness of their proposed activity among nominated and volunteered group of communities, to secure support and participation. This will mainly be done via social media, led by the PSP lead, Steering Group members, and partners. Awareness raising has several key objectives.

• To present the proposed plan for the Australian child and adolescent cancer PSP to a wide audience
• To generate support for the process throughout
• To encourage participation in the process
• To initiate discussion, answer questions and address concerns.

Key milestones for raising awareness will be documented in a communications plan to ensure that the PSP is promoted as widely and effectively as possible. These milestones include:

1. Launching the PSP, first Steering Group meeting and regular meetings
2. Launching the Survey 1 and goes live
3. Survey 1- closes
4. Survey 2 (interim priority setting) goes live
5. Survey 2 closes
6. Workshop expressions of interest applications open
7. Workshop dates open
8. Final report launches

Step 3: Identifying evidence uncertainties

The Australian Child and Adolescent Cancer PSP will carry out a consultation to gather uncertainties from individuals (including children/adolescents) who have been diagnosed with cancer during the period of 0-19th birthday, parents/carers/relatives, and health / social care professionals. A period of three months (agreed and may be revised by the Steering Group if required) will be given to complete this exercise.

The methods of collecting uncertainties will be designed according to the nature and membership of each individual and organisation, but will be as transparent, inclusive, and representative as practicable. Methods may include electronic (distributed via social media – Twitter, Instagram, or Facebook) or paper-based surveys, and focus group discussions.

The voice of the child or adolescent who has experience with cancer is a focus of this project. Appropriate methods to engage with children and adolescents will be considered to include their voice, for example, photo voice and storyboards. A subgroup of the Steering Group will focus on the engagement of children and adolescents to capture their unanswered questions. Methods will be piloted with children and their feedback sought about the best ways of engaging them.

The Steering Group will discuss and explore further opportunities to promote the study should we not achieve adequate representation. The PSP recognises the challenge of recruiting culturally and linguistically diverse groups, Aboriginal and/or Torres Strait Islander peoples, and those from regional/remote areas of Australia. We will partner with relevant organisations that will raise awareness of these harder-to-reach groups, and support recruitment. We will include optional demographic questions in our survey to track the inclusion of these groups (e.g., rurality, language, cultural background).

Existing sources of uncertainties about cancer in children and adolescents may also be accessed. These can include research recommendations in systematic reviews and clinical guidelines; protocols for systematic reviews being prepared and registers of ongoing research. Questions that are determined to be partially answered will be considered for inclusion in our interim prioritisation.

Step 4: Refining questions and uncertainties

Step 3 will produce ‘raw’, unanswered questions, gaps in the knowledge, and the answers of which may reduce individual and societal burden of cancer in children and adolescents in Australia. These raw questions will be categorised and refined into clear questions that are answerable by research and understandable to health and research professionals and the community by the PSP lead in collaboration with the Steering Group.

This will result in a long list of in-scope summary questions. The PSP lead will work with the Steering Group to frame these as researchable questions that capture the themes and topics that people have suggested. At this point, similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. This process will result in three lists of questions: a list of in-scope summary questions that have not been answered, in-scope summary questions that have been answered, and a list of out-of-scope questions.

The Steering Group will have oversight of this process to ensure that the raw data is being interpreted appropriately and that the summary questions are being worded in a way that is understandable to all audiences. The JLA Adviser will observe to ensure accountability and transparency.

The summary questions will then be checked against evidence to determine whether they have already been answered by research. This will be done by the PSP lead, with input from the Steering Group members depending on their area of expertise. Where evidence exists to address questions, but this evidence is not well known by the community, these questions and the evidence to address them will be collated for communication to appropriate stakeholders. These questions and evidence may require implementation work to integrate evidence into practice.

The Steering Group will agree to the process of evidence checking via the Question Verification Form which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. This form includes details of the types and sources of evidence used to check uncertainty. Once signed off by the Steering Group, the form will be published on the JLA website to enable researchers and other stakeholders to understand how the PSP has decided that its questions are unanswered, and any limitations of this.

Questions that the Steering Group decides are not adequately addressed by previous research will be collated and recorded on a standard JLA template by the PSP lead. The data will be submitted to the JLA for publication on its website on completion of the priority setting exercise, taking into account any changes made at the final workshop, to ensure that PSP results are publicly available. Any submitted questions considered by the Steering Group as out-of-scope or that has been answered by research will be published as a separate manuscript in a peer-reviewed journal.

Step 5: Prioritisation – interim and final stages

The aim of the final stage of the priority-setting process is to prioritise through consensus, the identified uncertainties about cancer in children and adolescents in Australia. This will be carried out by groups consisting of the wider partnership representing adolescents, families, and clinicians. At all stages of the PSP, the voice of the child or adolescent who has experienced cancer will remain at the forefront of focus. The JLA encourages PSPs to involve as wide a range of people as possible, including those who did and did not contribute to the first consultation.

Prioritisation will involve two stages.

1. Interim prioritisation survey

This stage will reduce the anticipated long list of questions to a shorter list that can be taken to the final priority-setting workshop.

This will be undertaken by distributing a survey via email or online through the website for children and adolescents with cancer, carers, family members, and health care professionals, where they will be asked to rank the top 10 most important unanswered questions.

The survey will remain live for three months. The most highly ranked questions (around 30) will be taken to a final priority-setting workshop. Where the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation.

Respondents will also be asked to share their email addresses to be notified about participating in the final priority-setting workshops.

2. The final priority setting workshop

The final stage aims to reduce the number of unanswered questions to the top 10 priorities.

This final priority setting workshop will be hosted online as two half day workshops. Interested attendees will be asked to submit an Expression of Interest (online, paper, over the telephone) to ensure that we include a representative sample (including children and adolescents with cancer, carers, and family members, and health and supportive care professionals). Workshop participants will be selected by the Steering Group from the Expression of Interest.

All selected participants will declare their interests, which will be shared with all participants for transparency. Potential methods including nominal group techniques and/or interactive research agenda setting will be held during the workshop.

Any knowledge gaps that do not make the ‘top 10’ will be listed separately for future research.

The workshop will be facilitated by the JLA advisor and ensure transparency, accountability and fairness. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible. Conflicts of interest will be declared in advance of this process.

It is anticipated the PSP will take between 18 months to complete.

Dissemination of results

The Steering Group will identify audiences with which it wants to engage when disseminating the results of the priority-setting process, such as researchers, funders, and the patient and clinical communities. They will determine how best to communicate the results and who will take responsibility for this.

We anticipate the findings of the Australian Child and Adolescent Cancer PSP will be reported to funding and research agenda-setting organisations such as the National Health Medical and Research Council and research-funding charities (e.g. Kids Cancer Project, Kids Cancer Alliance, Children’s Cancer Foundation), childhood cancer support services (e.g. Brainchild Foundation, Childhood cancer support, CanTeen, Kids with Cancer Foundation Australia, Neuroblastoma Australia, My Room Children's Cancer Charity, and Redkite) and professional groups such as the Australian New Zealand Children’s Oncology Group (ANZCHOG).

In addition, the PSP will also strengthen the working relationship between children and adolescent cancer advocates and the Australian Childhood Cancer Registry and Cancer Alliance Queensland to expedite research in the areas of need that can be answered using the data held in the Queensland Oncology Repository.

Importantly, the PSP findings will be a resource for child and adolescent cancer advocates, who also make an important contribution through their individual fundraising efforts, to influence the direction of research funding in Australia for cancer in children and adolescents.

We will seek to publish findings of the Australian Child and Adolescent Cancer PSP through virtual networks and social media in plain English.

As the final step, outputs from the PSP will likely include academic papers, lay reports, infographics, conference presentations, and videos for social media.

Topics or questions that are deemed out of scope will be reviewed by the Steering Group, and a plan of how to address these will be documented in the final report.

It should be noted that the top 10 priorities will not be worded as research questions. The Steering Group will discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by the PSP lead.

The JLA encourages PSPs to report back about any activities that have come about because of the PSP, including funded research. Please send any details to jla@soton.ac.uk.