Paediatric Emergency Medicine PSP protocol

Contents

Published: 02 February 2024

Version: 2

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Purpose of the PSP and background

The purpose of this protocol is to clearly set out the aims, objectives, and commitments of the Paediatric Emergency Medicine 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 healthcare professionals 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 healthcare 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.

Paediatric Emergency Medicine (PEM) is the medical specialty that cares for acutely injured and unwell children in hospital. Usually within the setting of Accident and Emergency Departments (A&E). Paediatric Emergency Departments vary in their set up across the UK and Ireland. Some are attached to children’s hospitals and see only children while others are in secondary care hospitals where they may be a children’s only department or see a mix of children and adults. Children attend with virtually any condition including, but not limited to, medical, surgical, orthopaedic, and mental health concerns.

Paediatric Emergency Research in the UK and Ireland (PERUKI) was established in 2012 to enhance the quality of emergency care for children and young people through robust collaborative multicentre research. In 2015 PERUKI published an initial list of research priorities which were identified via a two-part Delphi process. This prioritisation exercise drove the PERUKI research agenda for the first decade, and many of the questions have been successfully addressed through large multi-centre studies. In doing so PERUKI has been involved in attracting more than £15 million in successful grant applications.

In addition to answering a number of the original questions, the evolving landscape of healthcare, particularly in the wake of the COVID-19 pandemic and the changing pressures on the National Health Service (NHS), has introduced new dynamics and challenges that warrant a refresh of research priorities for PEM.

Furthermore, the original exercise was limited by the lack of patient and public involvement. There is therefore a need to repeat or ‘refresh’ this study utilising JLA PSP methodology to ensure direct representation for all key stakeholders.

Aims, objectives, and scope of the PSP

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

The objectives of the PSP are to:

  • work with patients, carers, and healthcare professionals to identify uncertainties in Paediatric Emergency Medicine. Doing so will focus research which will improve the quality of emergency care. This includes improvement in outcomes, equitable and efficient care, improvements in experience, quality of communication, continuity, and consistency of care.
  • to agree by consensus a prioritised list of those uncertainties, for research
  • to publicise the results of the PSP and process
  • to take the results to research commissioning bodies to be considered for funding.

The scope of the Paediatric Emergency Medicine PSP is defined as:

  • Children and young people using emergency care services. This includes from birth up to the age of 18 years, with some exceptions for young people who have not yet had their care transferred to adult services.
  • Inclusive of all of the UK and Ireland
  • Unscheduled emergency care irrespective of setting (including all accident and emergency (A&E) departments, children assessment units, minor injuries units, urgent care centres and care provided by ambulance services bringing children to hospital), that provide care to children and young people.

The PSP will exclude from its scope questions about:

  • Primary care/GP and 111 services
  • Care related to adults
  • Questions specific to inpatient care (hospital wards, and discharge from hospital wards)

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 healthcare professionals, as individuals or representatives from a relevant group.

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

Patient and carer representative/s

  • Carly Buchanan
  • Louise Hill-Davis
  • Natalie Prest
  • Valentina Borja
  • Additional input will be sought from the Young Person’s Advisory Group (YPAG), North England

Clinical representative/s

  • Alan Charters, Consultant Practitioner, Portsmouth Hospitals Trust
  • Imogen Gregg, Junior Sister and Clinical Educator, Oxford University Hospitals NHS Foundation Trust
  • Jordan Evans, Paediatric Emergency Medicine Consultant, Cardiff and Vale University Health Board
  • Kathryn Ferris, Paediatric Registrar, Queen’s University Belfast
  • Kerry Woolfall, Reader in Health Research Methodology, University of Liverpool
  • Kim Kirby, Paramedic and Senior Research Fellow in Paramedic Science, University of the West of England
  • Kim Walsh, Trainee Advanced Clinical Practitioner, Royal Preston Hospital
  • Laura Lee, Senior Advanced Clinical Practitioner, Norfolk and Norwich University Hospital
  • Mark Lyttle, Paediatric Emergency Medicine Consultant, Bristol Royal Hospital for Children
  • Michael Barrett, Paediatric Emergency Medicine Consultant, Dublin
  • Ruth Bonsor, Paediatric Nurse, Bristol Royal Hospital for Children
  • Siân Edwards, Lead Paediatric Advanced Nurse Practitioner, Watford General Hospital
  • Stuart Hartshorn, Paediatric Emergency Medicine Consultant, Birmingham Children’s Hospital
  • Thomas Waterfield, Paediatric Emergency Medicine Consultant, Royal Belfast Hospital for Sick Children

PSP Lead

  • Niall Mullen, Paediatric Emergency Medicine Consultant, South Tyneside and Sunderland NHS Foundation Trust

Project coordinator

  • Charlotte Sloane, Research Fellow, Queen’s University Belfast

James Lind Alliance Adviser and Chair of the Steering Group

  • Sope Wolffs, JLA

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:

  • Children and young people, especially those who have attended any emergency department
  • Parents and carers of children and young people who have attended any emergency department
  • Health and social care professionals – with experience in Paediatric Emergency Medicine

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 where the Steering Group considers it may be helpful.

To avoid potential bias and conflict all disease/body specific organisations and charities are excluded from partnering with the Paediatric Emergency Medicine PSP. They can however be contacted for dissemination and engagement with the surveys, as long as the steering group has ensured a broad dissemination to several charities/organisations/groups to ensure fair access to all and equal representation of minority conditions/populations.

Partner Organisations

The following medical colleges and organisations will be invited as partners:

  • Royal College of Emergency Medicine – Funding partner
  • Irish Association for Emergency Medicine (IAEM) – Funding partner
  • Irish Paediatric Emergency Medicine Association (IPEM) – Funding partner
  • Royal College of Paediatrics and Child Health

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 Emergency Medicine PSP.

  • Association of Paediatric Emergency Medicine (APEM)
  • General Paediatric Research UK and Ireland (GAPRUKI)
  • Royal College of Physicians Ireland – Faculty of Paediatrics
  • Paediatric Critical Care Society (PCCS)
  • Youth connections and adolescent groups – Generation R
  • Children’s sport groups
  • Disabled children’s partnership
  • Primary schools / Nurseries / Secondary schools
  • Health Education Departments across the UK and Ireland
  • National Health Service (NHS) Organisations within UK
  • Health Service Executive (HSE) Ireland
  • Personal and Public Involvement (PPI) Groups
  • Young Person Advisory Groups (YPAG) and STARS groups – Based in Sunderland
  • Groups for parents and carers e.g., Mumsnet
  • Bereaved groups and organisations that support them e.g. 2Wish
  • Established patient illness groups – Need to be mindful of advertising to a balances range of groups to ensure not heavily skewing questions towards one disease.
  • NIHR Clinical Studies Groups – Paediatrics.

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. Depending on budget, this may be done by a face-to-face meeting, or there may be other ways in which the process can be launched, e.g. via 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 Emergency Medicine PSP will carry out a consultation to gather uncertainties from patients, carers, and healthcare professionals. A period of 10 months will be given to complete this exercise (which may be revised by the Steering Group if required).

The Paediatric Emergency Medicine PSP recognises that the following groups may require additional consideration.

  • Children and young people with special educational needs and disabilities (SEND) – PSP will reach out to the Disabled Children’s Partnership.
  • Under-represented ethnic groups – PSP will monitor survey responses and target focus groups to reach under-represented groups.
  • Those with English as an additional language – PSP will recommend scan to read applications (e.g. Scan&Translate) for different languages.
  • Digital poverty and accessibility – PSP will make a paper version of the survey that can be advertised and distributed at PERUKI sites.
  • All other groups will be assessed based on survey response – PSP will use focus groups to improve engagement.

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

  • Online surveys
  • Paper survey form available to download and to be distributed at PERUKI sites
  • Focus groups to help under-represented groups access the survey

Existing sources of evidence uncertainties may also be searched.

Unanswered research questions from the 2015 PERUKI prioritisation study will be reviewed for potential inclusion.

Step 4: Refining questions and uncertainties

The consultation process will produce ‘raw’ questions and comments indicating patients’, carers’, and healthcare professionals’ areas of uncertainty. These raw questions will be categorised and refined by Charlotte Sloane 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 Charlotte Sloane. 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 Charlotte Sloane. 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 – interim and final stages

The aim of the final stage of the priority setting process is to prioritise through consensus the identified uncertainties about Paediatric Emergency Medicine. This will involve input from patients, carers, and healthcare professionals. 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.

  1. Interim prioritisation is the stage where the long list of 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 healthcare professionals in the process. The most highly ranked questions (around 25) 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.

  2. The final priority setting stage is generally a one-day workshop facilitated by the JLA. With guidance from the JLA and input from the Steering Group, up to 30 patients, carers and healthcare professionals 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 PERUKI.

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 the JLA.

Agreement of the Steering Group

The Paediatric Emergency Medicine PSP Steering Group agreed the content and direction of this Protocol on 15th January 2024.