Paediatric Sepsis PSP Steering Group terms of reference

This document sets out the Terms of Reference for the Steering Group of the James Lind Alliance (JLA) Paediatric Sepsis 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, 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.

The background and wider aims and responsibilities of the Paediatric Sepsis PSP are set out in its 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.

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 paediatric sepsis. 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 paediatric sepsis 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 are 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 Paediatric Sepsis Priority Setting Partnership

Membership of the Steering Group

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

It is agreed that for the Paediatric Sepsis 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 paediatric sepsis 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. 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
Publicise and participate in an initial awareness meeting if this takes place
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 unanswered questions and ideas for research (evidence uncertainties) from patients, carers, clinicians and existing literature
Oversee and lend expertise to the overall process, including agreeing the scope and the process for evidence-checking the summary questions
Have oversight of the shortlisting stage
Sign off the final shortlist of questions to be taken to the final priority setting workshop
Publicise the final priority setting workshop to help with recruitment to it
Help publicise the final top 10 uncertainties to the research community.

Specific Roles

Chair: The PSP will be chaired by Toto Gronlund, 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.

Lead: Dr Tom Solan and A/Prof Elliot Long are the joint leads 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.

Coordinator: Amanda Williams is 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: Hanan El Gharib is the Information Specialist for 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, and help develop the long list of questions, under the guidance and assurance of the Steering Group.

Evidence checker: TBC is the evidence checker for the PSP. The long list of questions need to be verified as unanswered. The SG may be involved in the process, and will approve the findings.

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.

Declaring interests

Steering Group members are asked to declare any interests relevant to the Paediatric Sepsis 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 who are currently clinically active may participate in the Steering Group, if they declare their interests. Pure researchers may attend meetings, support the Steering Group as advisers, but are not involved in decision making.

Timescales

The Paediatric Sepsis PSP first Steering Group meeting will be on 14/04/2025. We propose that the priority setting workshop takes place in approximately 12-18 months.

Please refer to the Paediatric Sepsis PSP protocol for details of the steering group members and their roles.

Purpose of the PSP and background

The purpose of this protocol is to clearly set out the aims, objectives and commitments of the Paediatric Sepsis 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 they agree are the most important for research in their topic area. Traditionally PSPs have focused on uncertainties about the effects of treatments, but some PSPs have chosen to broaden their scope beyond that. The aim of a PSP is to help ensure that those who fund health research are aware of what really matters to patients, carers and clinicians. The National Institute for Health and Care Research coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Coordinating Centre (NIHRCC), University of Southampton.

Sepsis affects around 50 million people globally each year, with half being children under 19. This results in significant childhood morbidity, long-term disability, and lost developmental opportunities. Despite its impact on children, efforts to improve prevention, recognition, treatment, and follow-up care remain limited. Global health inequities further increase children’s vulnerability, while the lack of paediatric-specific evidence in sepsis management risks suboptimal care.

Our vision was to unite healthcare professionals, patients, and families through the JLA PSP framework to identify key global research priorities in paediatric sepsis. By doing so, we aim to reduce mortality and morbidity in children affected by sepsis. This initiative is supported and funded by The Royal Children’s Hospital Foundation and an NHMRC Investigator Grant.

What is Sepsis?

Sepsis is a life-threatening response to infection, where the immune system overreacts and begins damaging the body’s own tissues and organs. It can arise from any type of infection—bacterial, viral, or fungal.

Despite advancements in vaccines, antibiotics, and intensive care, sepsis remains the leading cause of preventable death worldwide. It is a major global health burden, responsible for an estimated 2.9 million sepsis-related deaths in children under 5 years and 454,000 deaths in children and adolescents aged 5–19 years. While rare, sepsis can rapidly become fatal, even in previously healthy individuals.

Sepsis is often under-recognised and challenging to diagnose due to its symptoms overlapping with other illnesses. In the community, it typically presents as a rapid deterioration following common, preventable infections. It can also result from infections acquired in healthcare settings, which are a significant cause of adverse events in medical care.

The World Health Organisation (WHO) sepsis definition

Sepsis is a life-threatening condition that arises when the body’s response to infection causes injury to its own tissues and organs. It is frequently a final common pathway to death for many infectious diseases worldwide. It involves organ dysfunction caused by a dysregulated host response to infection and if not recognized early and managed promptly, it can lead to septic shock, multiple organ failure and death.

Aims, objectives and scope of the PSP

The aim of the Paediatric Sepsis PSP is to identify the unanswered questions about paediatric sepsis from patient, carer and clinical perspectives and then prioritise those that patients, carers and clinicians agree are the most important for research to address.

The objectives of the PSP are to:

work with patients, carers and clinicians to identify uncertainties about the recognition, diagnosis, treatment and care of children with sepsis
identify key research areas related to paediatric sepsis that are outstanding
improve the morbidity and mortality of children affected by sepsis
determine ways to enhance care, support and long-term outcomes for children who survive sepsis
to agree by consensus a prioritised list of those uncertainties to guide future paediatric sepsis research
to publicise the results of the PSP and process
to take the results to research commissioning bodies to be considered for funding.

The PSP scope will include:

The scope of the Paediatric Sepsis PSP will cover all aspects of paediatric sepsis management, encompassing susceptibility, risk factors and prevention, diagnosis, recognition by caregivers, diagnostic tools, treatment, and outcomes—including physical, psychological, social, and societal impacts. Additionally, it will examine the effects of paediatric sepsis on families and caregivers.

We will include infants and children from 1 week of life to 18 years of life.

The Paediatric Sepsis PSP will be a global initiative focusing on both high and low middle income countries.

The PSP will exclude from its scope questions about:

Adult sepsis
Pre-term infants born before 40 weeks’ gestation
Day 1 to 7 of life.

The Steering Group is responsible for discussing what implications the scope of the PSP will have for the evidence-checking stage of the process. Resources and expertise will be put in place to do this evidence checking.

The Steering Group

The Steering Group includes membership of patients and carers and clinicians, as individuals or representatives from a relevant 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. Resources and expertise will be put in place to do this evidence checking.

The Paediatric Sepsis PSP will be led and managed by a Steering Group involving the following:

Patient and carer representative/s

Kimberley Bulka, Australia. Parent of child affected by sepsis
Kate Rawnsley, Australia. Parent of child affected by sepsis
Andreia Puopolo, Australia, Parent of child affected by sepsis
Catherine Han, Australia, Parent of child affected by sepsis
Tenielle Bale, Australia, Parent of child affected by sepsis
Jessica Carnie, Australia, Parent of child affected by sepsis
NACCHO Group: pending

Clinical representative/s: High income countries

Dr Sarah McNab, Consultant Paediatrician, The Royal Children’s Hospital Melbourne, Australia
Dr Srinivas Murthy, Paediatric Intensivist, BC Children’s Hospital, Canada
Dr Shane George, Paediatric Emergency Physician, Gold Coast University Hospital, Australia
Dr Deb Long, Professor of Nursing, Queensland University of Technology
Dr Katherine Priddis, Paediatric Emergency Medicine Consultant, Watford General Hospital, London, UK
Dr Ben Lawton, Paediatric Emergency Physician, Queensland Children’s Hospital, Brisbane, Australia
Dr Alison Boast, Paediatric Infectious Diseases Physician, Victoria, Australia
Dr Neil Wimalasundera, Paediatric Rehabilitation Physician, Victoria, Australia

Clinical representatives: Low Middle-Income Countries

Dr Radhika Raman, Paediatric Emergency Senior Consultant, CHILDS Trust Hospital (KKCTH), India
Dr Yashica Seymour-Hanna, Consultant Paediatrician, Bahamas
Prof Özlem Tekşam, Paediatric Emergency Physician, Hacettepe University, Türkiye
Dr Jenala Njirammadzi, Consultant Paediatrician, Malawi, Africa
Dr Antionette David, Consultant Paediatrician, Fiji
Dr Janvier Hitayezu (Rwanda)
Dr Viviana Pavlicich, Paediatric Emergency Physician, Hospital Acosta Ñu. Asuncion, Paraguay Neonatologist

Project Team

Project Lead(s)

Dr Tom Solan, Paediatric Emergency Fellow, The Royal Children’s Hospital, Melbourne, Australia A/Prof Elliot Long, Paediatric Emergency Physician, The Royal Children’s Hospital, Melbourne, Australia

Project coordinator

Amanda Williams, Research Coordinator, Murdoch Children’s Research Institute, Australia

Information Specialist

Hanan El Gharib, Murdoch Children’s Research Institute

James Lind Alliance Adviser and Chair of the Steering Group

Toto Anne Gronlund, JLA Adviser

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 and individuals will be invited to be involved with the PSP as partners. 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 represent the following groups:

Carers of children who have had sepsis
Health and social care professionals – with experience of sepsis
Organisations engaging include: PREDICT (Paediatric Research in Emergency Departments International Collaborative), Murdoch Children’s Research Institute, University of Melbourne, Sepsis 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 between 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 partner organisations will be identified through a process of peer knowledge and consultation, through the Steering Group members’ networks. Potential partners will be contacted and informed of the establishment and aims of the Paediatric Sepsis PSP.

Step 2: Awareness raising

PSPs will need to raise awareness of their proposed activity among their patient, carer and clinician communities, in order to secure support and participation. This may be done by online meetings and social media. It may be carried out as part of steps 1 and/or 3. The Steering Group should advise on when to do this. Awareness raising has several key objectives:

to present the proposed plan for the PSP
to generate support for the process
to encourage participation in the process
to initiate discussion, answer questions and address concerns.

Step 3: Identifying evidence uncertainties

The Paediatric Sepsis PSP will carry out a consultation to gather uncertainties from patients, carers and clinicians. A period of around 3 months will be given to complete this exercise (which may be revised by the Steering Group if required).

The Steering Group will guide and support the PSP to engage with a diverse range of communities, ensuring that voices from marginalised and under-served groups are heard. Our aim is to include a broad spectrum of people affected by paediatric sepsis, recognising that certain populations may face worse health outcomes due to factors such as socioeconomic disadvantage, age, language barriers, and limited healthcare access.

We are committed to reaching low- and middle-income countries, marginalised groups, and isolated populations to ensure their perspectives are represented in shaping research priorities.

The Steering Group will use the following methods to reach the target groups:

Online surveys, communicated and supported by social media
Paper surveys where appropriate
Face to face interactions (e.g. focus groups or in-person support to complete the survey).

Existing sources of evidence uncertainties may also be searched. Evidence checking will be conducted across national and international clinical guidelines, recommendations, national surveillance and audit findings, systematic reviews, research publication databases and trials registries. The evidence checking strategy will be informed by the submitted data.

Step 4: Refining questions and uncertainties

The consultation process will produce ‘raw’ questions and comments indicating patients’, carers’ and clinicians’ areas of uncertainty. These raw questions will be categorised and refined into summary questions which are clear, addressable by research, and understandable to all. Similar or duplicate questions will be combined where appropriate. Out-of-scope and ‘answered’ submissions will be compiled separately. 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.

This will result in a long list of in-scope summary questions. These are not research questions and to try and word them as such may make them too technical for a non-research audience. They will be framed as researchable questions that capture the themes and topics that people have suggested.

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 Information Specialist, A/Prof Elliot Long and Dr Tom Solan. The PSP will complete the JLA Question Verification Form, which clearly describes the process used to verify the uncertainty of the questions, before starting prioritisation. The Question Verification Form includes details of the types and sources of evidence used to check uncertainty. The Question Verification Form should be published on the JLA website as soon as it has been agreed 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 are not adequately addressed by previous research will be collated and recorded on a standard JLA template by the PSP Information Specialist. This will show the checking undertaken to make sure that the uncertainties have not already been answered. The data should 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, in order to ensure that PSP results are publicly available.

The Steering Group will also consider how it will deal with submitted questions that have been answered, and questions that are out of scope.

Step 5: Prioritisation – shortlisting and final stages

The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about Paediatric Sepsis. This will involve input from patients, carers and clinicians. 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. There are usually two stages of prioritisation.

Shortlisting is the stage where the long list of summary questions is reduced to a shorter list that can be taken to the final priority setting workshop. This is aimed at a wide audience and is done using similar methods to the first consultation. With the JLA’s guidance, the Steering Group will agree the method and consider how best to reach and engage patients, carers and clinicians in the process. The most highly ranked questions (around 25, or up to 18 for online workshops) will be taken to a final priority setting workshop. Where the shortlisting does not produce a clear ranking or cut off point, the Steering Group will decide which marginal questions are taken forwards to the final prioritisation.
The final priority setting stage is generally a one-day (or 2x1/2 days) workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 patients, carers and clinicians will be recruited to participate in a day of discussion and ranking, to determine the top 10 questions for research. All participants will declare their interests. The Steering Group will advise on any adaptations needed to ensure that the process is inclusive and accessible.

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 need to determine how best to communicate the results and who will take responsibility for this. Previous PSPs’ outputs have included academic papers, lay reports, infographics, conference presentations and videos for social media.

It should be noted that the priorities are not worded as research questions. The Steering Group should 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 Murdoch Children’s Research Institute and the PREDICT Network.

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.

Agreement of the Steering Group

The Paediatric Sepsis PSP Steering Group agreed the content and direction of this Protocol on 17/02/2025.

Frequently asked questions

Sepsis is a life-threatening condition that arises when the body’s response to infection injures its own tissues. Any type of infection —bacterial, viral or fungal — can lead to sepsis, with potentially devastating results.
If not recognised and treated promptly sepsis can result in avoidable death and disability. Sepsis can affect previously healthy people, and has profound impacts on individuals, their families, and the healthcare system. Many sepsis survivors endure substantial morbidity, including amputations, irreversible functional disabilities, persistent symptomatic organ dysfunction, and psychological trauma, often leading to frequent re-hospitalisations.
The aim of PSPs is to bring patients, carers and clinicians together to jointly identify priorities for research. The James Lind Alliance's current portfolio of PSPs is on the JLA website. JLA PSPs are characterised by following an evidence-based method set out in the JLA Guidebook and are facilitated by one of a small team of approved JLA Advisers.

PSPs' objectives are to:
- bring patients, carers and clinicians together to identify uncertainties or unanswered questions for specific health issues
- agree by consensus a prioritised 'Top 10' list of those uncertainties for research
- publicise the methods and results of the PSP
- draw the results to the attention of research funders, independently of the JLA.
Advocates of, and individuals from, the following groups are eligible to take part in a PSP:
- people with experience of the health area in question
- carers and families of those affected
- health and social care professionals working with patients and carers in the health area in question.
The James Lind Alliance (JLA) is a non-profit making initiative which is funded by the UK’s National Institute of Health Research (NIHR). It provides a “tried-and-tested”, fair and rigorous process to help patients, carers and clinicians work together to agree which are the most important treatment uncertainties affecting their particular interest (in this case sepsis), in order to influence the prioritisation of future research in that area.
- People who have had sepsis in their childhood or adolescent years
- Carers of people who have had sepsis in their childhood or adolescent years (families, partners, friends etc.)
- Health care professionals involved in the care/treatment of patients with sepsis in their childhood or adolescent years
Please note: Survey respondents must be over 18 .
It should take about 5 minutes to complete

Your question(s) will be gathered together and examined with questions we receive from everyone else who takes part in this survey.
The questions that haven’t already been answered by research will be published.
They will go through a process of prioritisation which you can also be involved in if you like.
This will result in a list of research topics which we will use to influence future research priorities and decisions.
We’d love your help!
There will be several options:
- You can simply forward the survey link: https://monashred.au1.qualtrics.com/jfe/form/SV_enZX9AvSAQ2FUOy
  OR
- download and print the survey here and return with free reply paid mail.
There will be two surveys.
Survey 1 offers paediatric sepsis patients, carers and healthcare professionals the chance to participate in a survey aimed at gathering their questions and concerns about sepsis. This input will help us identify the most common unanswered research questions. Their questions can help us find important areas to research in order to improve the healthcare and wellbeing of Australians affected by Sepsis.
Once we collect the questions, we will review them against existing published research to determine which have already been addressed.
From here we conduct Survey 2 to help prioritise the summary questions.
Ultimately, we will publish a final list of the Top 10 unanswered research questions, encouraging researchers and funding bodies to focus on the most urgent and relevant needs of those affected by Sepsis.

Paediatric Sepsis Priority Setting Partnership

The Paediatric Sepsis Priority Setting Partnership (PSP) has been established to identify the most urgent unanswered questions about sepsis in children and to set priorities for future research. This work is guided by the James Lind Alliance (JLA), an initiative that brings together patients, carers, and clinicians to shape research agendas around issues that matter most to those directly affected.

This protocol outlines the purpose, scope, and commitments of the PSP. It is a requirement of the JLA and will be publicly available on the JLA website. The Steering Group will review it regularly to ensure it reflects the progress and direction of the partnership.

The scope will include infants and children from 1 week of life to 18 years of life.

The PSP is a global initiative focusing on both high and low middle income countries.

Stay in the loop. This process is iterative by nature, and we’d love to keep you informed of future developments and opportunities to help out.

Subscribe here

Survey One:

About the James Lind Alliance

The JLA was established in 2004 as a non-profit initiative coordinated by the National Institute for Health and Care Research (NIHR) in the UK. Based at the NIHR Coordinating Centre at the University of Southampton, the JLA supports Priority Setting Partnerships across a wide range of health topics.

The goal of a PSP is to ensure that research addresses the questions that matter most to patients, families, and clinicians—not just those identified by academics or industry. Traditionally, PSPs have focused on the effects of treatments, but many now take a broader view, considering prevention, diagnosis, care, and long-term outcomes. Once priorities are set, they are shared with research funding bodies to influence the focus of future studies.

Why Paediatric Sepsis?

Sepsis is a life-threatening condition in which the body’s response to infection becomes harmful, causing organ damage and, in many cases, death. It can arise from bacterial, viral, or fungal infections, and despite advances in vaccines, antibiotics, and intensive care, sepsis remains the leading cause of preventable deaths worldwide.

Children are particularly vulnerable. Globally, sepsis affects around 50 million people each year, half of whom are under 19. It is responsible for an estimated 2.9 million deaths annually in children under 5 and 454,000 deaths in those aged 5–19. Survivors often face long-term disability, psychological impacts, and lost developmental opportunities.

Sepsis can progress rapidly, even in previously healthy children. Its symptoms often resemble other common illnesses, making early recognition difficult. It may develop in the community, usually following a preventable infection, or in hospital, where healthcare-associated infections are a major cause of serious harm. The World Health Organization defines sepsis as “a life-threatening condition that arises when the body’s response to infection causes injury to its own tissues and organs.”

Despite its enormous burden, paediatric-specific research into prevention, diagnosis, treatment, and follow-up care remains limited. Global inequities in healthcare further compound the risks faced by children, particularly in low- and middle-income countries. Addressing these gaps requires coordinated international effort.

Vision and Support

The Paediatric Sepsis PSP was created to unite healthcare professionals, patients, families, and carers in shaping the research agenda for paediatric sepsis. Using the JLA framework, this partnership will identify and prioritise the questions that most urgently need answers. The ultimate aim is to reduce mortality and improve outcomes for children worldwide.

This work is supported by The Royal Children’s Hospital Foundation and an NHMRC Investigator Grant.

Aims and Objectives

The Paediatric Sepsis PSP aims to identify unanswered questions about paediatric sepsis and reach a consensus on the most important areas for research.

Its objectives are to:

Work with patients, carers, and clinicians to identify uncertainties about recognising, diagnosing, treating, and caring for children with sepsis.
Highlight gaps in evidence that, if addressed, could reduce mortality and morbidity.
Explore ways to improve care, support, and long-term outcomes for survivors and their families.
Develop a prioritised list of research questions agreed upon by patients, carers, and clinicians.
Share the results widely and present them to research commissioning bodies for consideration.

Scope of the Partnership

The scope of the Paediatric Sepsis PSP is broad, covering all aspects of paediatric sepsis management. This includes:

Susceptibility, risk factors, and prevention.
Early recognition by parents, carers, and health professionals.
Diagnostic tools and strategies.
Treatment in hospital and community settings.
Outcomes and impacts—physical, psychological, social, and societal.
Effects of sepsis on families and caregivers.

The PSP will include infants and children from one week to 18 years of age, across both high-income and low- and middle-income countries. Particular attention will be paid to vulnerable groups at higher risk.

Exclusions: The PSP will not cover adult sepsis, preterm infants born before 40 weeks’ gestation, or newborns in their first week of life.

Process and Oversight

The Steering Group will oversee the work of the PSP, ensuring the protocol and its scope are applied consistently. This includes planning for the evidence-checking phase, where existing research will be reviewed to confirm genuine gaps in knowledge. Appropriate resources and expertise will be dedicated to this stage to maintain rigour and transparency.

Conclusion

Sepsis in children is an urgent global health challenge that demands focused, patient-centred research. By bringing together the voices of families, carers, and clinicians, the Paediatric Sepsis Priority Setting Partnership will ensure that future studies address the questions with the greatest potential to save lives and improve outcomes. This collaborative approach, grounded in the principles of the James Lind Alliance, represents an important step towards reducing the devastating impact of paediatric sepsis worldwide.

CLINICAL LEADS

Tom Solan - Lead

Dr Tom Solan is a Paediatric Emergency Doctor at The Royal Children’s Hospital in Melbourne, Australia. Originally from the UK, he completed his medical degree and worked in the NHS for four years before relocating to Australia in 2017 to undertake specialist training in Paediatric Emergency Medicine and General Paediatrics. He is an early-career clinical researcher with interests in paediatric sepsis, airway management, and patient safety. Tom is also a Research Fellow at the Murdoch Children’s Research Institute and an active contributor to the Paediatric Research in Emergency Departments International Collaborative (PREDICT) network and the Difficult Airway Society.

Elliot Long - Co Lead

Associate Professor Elliot Long is a paediatric emergency physician working at The Royal Children’s Hospital. He is the Sepsis Research Team leader at Murdoch Children’s Research Institute, and an Associate Professor at The University of Melbourne. His doctoral study investigated the role of ultrasound in fluid resuscitation for sepsis.

As an executive member of the Paediatric Research in Emergency Departments International Collaborative (PREDICT) Network, Associate Professor Long has undertaken national and international sepsis-related research projects. These have included collaborations with other emergency research networks and individual sites in high and low- and middle-income countries.

JLA International Paediatric sepsis steering group

Patient and Carer Representative

Melbourne mother of two whose family journey was forever changed when my daughter survived sepsis at age 7. I'm passionate about sharing our experience to raise awareness, support research, and help other families navigate similar challenges through this program.
Description text gWhen Jessica's son was 13 months old he became very sick. After multiple emergency department visits, Ryan declined rapidly and was flown to the nearest major city. On arrival he went into cardiac arrest and Jessica was told he wasn’t going to make it. After 10 minutes thankfully Ryan pulled through, but was found to be in severe septic shock from a strep A infection. Although Ryan survived, due to the damage caused he had to have major surgery to amputate both of his lower legs and all of his fingertips/some fingers.

Jessica has been working to help raise awareness of sepsis and to help promote quicker diagnosis and treatment times.oes here

Kimberley Bulka

Kate Rawnsley

Andreia Rodrigues

Tenielle Bale

Clinical representatives - HIC

Dr Alison Boast is a Paediatric Infectious Diseases Physician and PhD candidate at the University of Melbourne.
Associate Professor George is an Emergency Physician and Paediatric Intensivist working in Queensland, Australia. He is an active clinician researcher with an interest in topics which span both emergency and intensive care practice, including sepsis. He is vice-chair of the Paediatric Research in Emergency Departments International Collaborative (PREDICT) research network and a member the of the Australia and New Zealand Intensive Care Society Paediatric Study Group (ANZICS PSG).
Dr Ben Lawton is a paediatric emergency physician working as a paediatric retrieval consultant in South Australia and in an emergency department in Queensland. He has active interests in simulation and patient safety.
Professor Debbie Long is a leading paediatric critical care nursing researcher. She is a professor in paediatric nursing based at Queensland University of Technology. A leading Australian researcher in paediatric critical care long-term outcomes, Debbie heads the Paediatric Intensive Care Optimising Long-term Outcomes (PICOLO) network, a collaboration of clinicians, researchers, and consumers dedicated to improving outcomes for children and their families following critical illness. She was elected co-vice chair of the Australian and New Zealand Intensive Care Society's Paediatric Study Group in 2025.
Dr Sarah McNab is a general paediatrician and the Director of General Medicine at The Royal Children’s Hospital in Melbourne. She holds honorary appointments with Murdoch Children’s Research Institute (where she completed a Clinician Scientist Fellowship) and The University of Melbourne. Sarah’s PhD research compared intravenous fluids in children and helped lead international practice change. Subsequently, she founded and co-chaired CIRCAN (Children’s Inpatient Research Collaboration of Australia and New Zealand) which has representatives from 42 hospitals.
Dr Srinivas Murthy is a pediatric intensive care and infectious diseases physician in Vancouver, BC, Canada. His clinical and academic interests are in innovative clinical trials to improve the outcomes of severe infections.
Dr Neil Wimalasundera trained in the UK and was clinical lead for the Wolfson Neurodisability service at Great Ormond Street Hospital before starting at the Royal Children’s Hospital in 2017. He is the Director of the Victorian Paediatric Rehabilitation Service at the RCH and specialist interests include the management of complex movement disorders, cerebral palsy and acquired brain injury.

Clinical representatives - LMIC

Dr Jenala Njirammadzi is a Paediatric Intensivist and Senior Lecturer. Her research interests are critical care, infectious diseases, monitoring, and safe patient transfer.
Dr Rahhika Raman is the Pediatric Emergency Head of Department at a 200 bedded pediatric teaching hospital in South India and President of Pediatric Emergency Medicine chapter of Indian Academy of Pediatrics - 2023-2024. Dr Raman is actively involved in improving Pediatric Emergency care in India and interested in research that would contribute to establishing standards of care in the region.
Dr. Özlem Tekşam completed her pediatric residency training at Hacettepe University. She completed Neonatology Fellowship training and she received a certificate of expertise in PEM at the same institution. She also received a PhD degree in Pharmaceutical Toxicology at Hacettepe University. Since 2015, she has been working as a Professor of Pediatrics at Hacettepe University as the director of the Division of PEM and the director of the General Pediatric Outpatient Clinic. Her specific areas of research and study are triage in hospitals, injury prevention, trauma, disaster, toxicology and training in PEM. She is a member of the Executive Committee of the Turkish National Pediatric Society and the President of the Turkish Pediatric Emergency Medicine and Intensive Care Society. Currently, she is working as Communication Leader of the Special Interest Group in the PEM Branch (EUSEP) of the European Society of Emergency Medicine (EUSEM). She is also past Co-Chair of the International Pediatric Association Strategic Advisory Committee on Children in Humanitarian Emergencies.

Dr Antionette David

Dr Viviana Pavlicich