Global Burn Injury PSP Protocol

  • Published: 01 December 2021
  • Version: V1.8
  • 12 min read

Purpose of the PSP and background

The purpose of this protocol is to set out the aims, objectives and commitments of the Global Burns Research Priority Setting Partnership (PSP) in line with James Lind Alliance (JLA) principles. The shorthand title of the project is Priorities in Global Burns Research. The Protocol is a JLA requirement and will be published on the PSP’s page of the JLA website. For transparency, we will also aim to publish the protocol in a relevant peer-reviewed journal. The Steering Group will review the Protocol regularly and any updated version will be sent to the JLA and noted as a new version.

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 burn care. PSPs focus on uncertainties about the effects of treatments and clinical care. 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 (NIHR – www.nihr.ac.uk) coordinates the infrastructure of the JLA to oversee the processes for PSPs, based at the NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC), University of Southampton.

This PSP is funded by a personal Advanced Fellowship for Dr Amber E Young. The members of the PSP Steering Group were chosen to reflect multidisciplinary burn care expertise, lived experience of a burn injury and to reflect burn care in a range of countries, including higher and lower income countries with different levels of access to health care systems. Equality and diversity was important in member choice.

Aims, objectives and scope of the PSP

The aim of the Global Burns Research PSP is to identify the unanswered questions about burn care 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 burn care management.
  • 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 Global Burns Research PSP is defined as:

  • any aspect of international burn care for patients of any age or gender, with thermal burn injuries of any cause.
  • In addition to all aspects of burn care, this PSP will initially include burns prevention, unless it pertains to interventions in healthcare infrastructure or delivery specific to an international partners’ local situation. The continued inclusion of burns prevention within the scope of the PSP will be discussed by the Steering Group following Step 3: Identification of evidence uncertainties, outlined in Section 5.

The PSP will exclude from its scope questions about:

  • Healthcare infrastructure and economics of provision of care.
  • Health and Safety regulations related to domestic and occupational settings
  • Burns that do not need clinical care (e.g., burns of less than 0.5% body surface area, erythema alone)
  • Care for non-thermal burns (e.g., chemical or electric burns) and non-burn skin-loss conditions will be excluded.

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 are 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 and aims to include members who are representative of the global scope of the project. As around 70% of burn injuries occur in lower income countries, Steering Group membership will include international members from countries of a range of income statuses where possible.

The Global Burns Research PSP will be led and managed by a Steering Group involving the following:

Patient and carer representative/s:
Catrin Pugh
Ian Easton
Alex Holley
Roy Dudley-Southern

Clinical representative/s:
Baljit Dheansa: Burn Surgeon, Queen Victoria Hospital, East Grinstead
Sian Falder: Paediatric Burn Surgeon, Alder Hey Hospital, Liverpool
Declan Collins: Burn Surgeon, Chelsea and Westminster Hospital, London
Mamta Shah: Paediatric Burn Surgeon, Royal Manchester Children’s Hospital
Niall Martin: Burn Surgeon (military), St Andrews Burn Centre, Chelmsford
Jane Leaver: Burn Nursing, Birmingham City University
Simon Booth: Burn Nursing research, BBA research rep, Queen Victoria Hospital, East Grinstead
Krissie Stiles: Burn Nursing, Kings College Hospital, London
Joseph Hussey: Burn Anaesthesia and Intensive Care, St Andrews Burn Centre, Chelmsford
Janine Evans: Burn Occupational Therapy, Welsh Centre for Burns, Swansea
Alice Lee: Junior Plastic Surgeon, Imperial/Oxford
Jill Meirte: Burn Scar Research and Therapy, OSCARE, Belgium
Peter Moortgat: Burn Scar Research and Therapy, OSCARE, Belgium
Marielle Vehmeijer: Burn Surgeon, Nijmegen, Netherlands
Elleke Munk: Junior Doctor, Nijmegen, Netherlands
Shobha Chamania: Burn Surgeon, Indore, India

Non-governmental Organisations:
Charlotte Coates: Senior Research Manager, Scar Free Foundation

Project Coordinator and Lead:
Dr Amber Young: Consultant Paediatric Anaesthetist, NIHR Advanced Fellow, University of Bristol

Project Information Analyst:
Rob Staruch: Junior Plastic Surgeon and Doctoral Fellow (military), Oxford

Project Researcher:
Hollie Richards: Senior Research Associate, University of Bristol

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

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

International members:

Members from all continents and world bank income group countries will be considered for steering group membership. Global members – as with UK members - will have the opportunity to contribute to the development of documents and plans for the PSP. They will be invited to join an online ‘Slack’ group where they will have access to discussions and be invited to share their opinions about the project.

Partners

Organisations and individuals will be invited to be involved with the PSP as partners. Organisations to be invited may include British Burns Association; European Burns Association; American Burns Association; Australian & New Zealand Burn Association; Japanese Burn Association; Chinese Burn Association ; Hong Kong Burns Association; International Society for Burn Injuries; European Burns Association Professionals Allied to Medicine Committee; European Burns Association Prevention Committee. This will be updated as further partners are identified.

Partners are organisations or groups who will commit to supporting the PSP, promoting the process and encouraging their represented groups or members to participate, and will disseminate the PSP surveys. Organisations which can reach and advocate for these groups will be invited to become involved in the PSP. Partners represent the following groups:

  • people who have had thermal burn injuries
  • carers of people who have had thermal burn injuries
  • multidisciplinary health and social care professionals - with experience of burn care.

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 at www.jla.nihr.ac.uk 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 Global Burns Research 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. Depending on logistical considerations, this may be done by a face-to-face or zoom as a series of stakeholder meetings. A video animation will be developed to raise awareness of the proposed activity and will be distributed by partners via social media and online resources. The Steering Group will 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.
  • to identify those potential partner organisations which will commit to the PSPs and identify individuals who will be those organisations representatives and the PSP’s principle contacts

Step 3: Identifying evidence uncertainties

The Priorities in Global Burns Research PSP will carry out a consultation to gather uncertainties from patients, carers and clinicians. A period of three months will be given to complete this exercise (which may be revised by the Steering Group if required).

The Priorities in Global Burns Research PSP recognises that the following groups may require additional consideration:

  • International burn care patients, carers and clinicians who do not speak English. In order to address unanswered questions in burns care globally, the surveys and materials used to support them will be translated into other languages. For example, the video animation will be made available with narration and/or subtitles in alternative languages. These languages will be selected based on the Partnership networks to reflect the main languages of geographical areas where the surveys will be distributed. We will aim to include languages representing each continent, to represent the higher incidence of burns injury in low and lower middle-income countries and representative of inequities in access to specialist burns treatment.
  • International burn care patients, carers and clinicians with limited access to the internet and/or digital devices. Due to the nature and scope of the PSP it is only feasible to collect survey data and feedback electronically via a website. However, this will serve as a barrier for individuals who do not have access to mobile devices and/or the internet, and is a recognised limitation of the project. There may be potential to work with Partners in environments with low levels of digital devices and/or internet access whereby clinicians or representatives at treatment centres are able to complete surveys on the behalf of patients and carers. This can be determined on a case by case basis.


The methods used to distribute the surveys will be designed according to the membership and features of the different organisations involved in distributing the surveys, accounting for country and language. The Steering Group and Partners will use the following methods to reach the target groups:

  • Social media, including use of a video animation:
    • Facebook
    • Twitter
    • Instagram
    • Weibo
    • WeChat
    • YouTube
    • Linkedin
    • Researchgate
  • Personal email to individuals identified by members of the Steering Group or wider Partners
  • Burn support group websites, newsletters, and email
  • Burn organisation websites and distribution lists
  • The Priorities in Global Burns Research PSP website

Existing sources of evidence uncertainties may also be searched.

  • An overview of burn care systematic reviews and SR protocols
  • Cochrane reviews
  • Clinical guidelines
  • PROSPERO website
  • Clinical trials websites
  • Journal publications including letters to the editor, survey articles and conference abstracts etc.

Step 4: Refining questions and uncertainties

The consultation process will produce ‘raw’ questions and comments indicating patients’, carers’ and clinicians’ areas of uncertainty. By ‘raw’ questions we mean those that are provided by respondents to the survey which may not be written in such a way as to inform a research question. These raw questions will be categorised and refined by the Priorities in Global Burns Research PSP ‘core team’ (Amber Young (lead), Robert Staruch (information specialist) and Hollie Richards (senior research associate), 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 Priorities in Global Burns Research PSP ‘core team’. 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. This process may involve systematic reviews, literature and guidance reviews and examination of other evidence sources as deemed appropriate by the Steering Group. This will be undertaken in accordance with JLA Guidance for verifying uncertainties.

Questions that are not adequately addressed by previous research will be collated and recorded on a standard JLA template by Priorities in Global Burns Research PSP ‘core team’. 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 international burn care . 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.

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 clinicians 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 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. The Steering Group may decide to hold more than one workshop, depending on the results of the preceding stages.

Dissemination of results

Findings and research

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. We will disseminate the unanswered questions through our Partner networks, Global collaborators and Steering Group members through methods including the above and the project website. Findings will be presented at academic, healthcare and support organisation conferences and meetings. Additional outputs include peer-review open-access academic papers, infographics, animation videos and dissemination via 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. An additional consideration in this process will be how the identified priorities can be made applicable to different settings (e.g. low or middle income countries and areas with limited access to specialist burns treatment). The dissemination of the results of the PSP will be led by the Global Burns Research PSP ‘core team’.

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 Global Burn Injury PSP Steering Group agreed the content and direction of this Protocol in December 2021.