COPD Flare-ups PSP Protocol


Published: 12 March 2020

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 COPD Exacerbations 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 (NIHR – 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 was originally developed by a group of clinical academic whose over-arching aim is to improve the outcomes and experience for people affected by exacerbations of COPD. A proposal was submitted to the British Lung Foundation and we were noted of successful funding in late 2018. We subsequently approached additional representation from people affected by COPD.

Aims, objectives and scope of the PSP 

The aim of the COPD Exacerbations PSP is to identify the unanswered questions about exacerbations of COPD 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 management and prevention of exacerbations in people with COPD
  • 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 COPD Exacerbations PSP is defined as:

The main themes are in relation to diagnosis, prevention, and management of exacerbations incorporating treatment. These can be conceptualised as:

Why did this event happen? What causes exacerbations?

How can we treat exacerbations while they are happening? This includes self-care, additional support e.g. physiotherapy, occupational therapy, psychological support and clinician led support.

What can we do to prevent them from happening in the future, both self-care and multi-disciplinary clinical support?

The PSP has agreed that this PSP cannot cover all elements of COPD. Therefore it is agreed that the PSP would concentrate on exacerbations in people with COPD. The group recognised the need to include those who may refer to their disease using alternative terms such as emphysema or chronic bronchitis. This will be reflected in the survey when we ask who is completing the survey.

Included in the COPD Exacerbation PSP scope:

  • Any participant above 18 years of age (adult)
  • We will only consider responses from the UK.
  • Excluded from the COPD Exacerbation PSP scope:
    • Asthma
    • Responses from industry or pharmaceutical companies. 

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 COPD Exacerbations PSP will be led and managed by a Steering Group involving the following:

Patient and carer representative/s:

Teresa BURGOYNE, Patient and Carer Representative; BLF Trustee

John LOOTS, Patient Representative

Joan MCCARTHY, Patient representative

Clinical representative/s:

  • John HURST, Professor of Respiratory Medicine, University College London
  • Tom WILKINSON, Professor of Respiratory Medicine, University of Southampton
  • Charlotte BOLTON, Professor of Respiratory Medicine, University of Nottingham
  • Jennifer QUINT, Reader in Respiratory Epidemiology, Imperial College London
  • Elizabeth SAPEY, Reader in Respiratory Medicine, University of Birmingham
  • Mona BAFADHEL, Associate Professor in Respiratory Medicine, University of Oxford
  • Heidi RIDSDALE, Service Lead and Specialist Physiotherapist, Camden COPD and Home Oxygen Service
  • Joanne KING, Consultant Respiratory Nurse, Clinical Lead for the Adult Integrated Respiratory team
  • Steve HOLMES, General Practitioner, Park Medical Practice, Shepton Mallet. 

Project coordinator: Jaber Alqahtani, PhD student, University College London 

James Lind Alliance Adviser and Chair of the Steering Group: Ms Sheela Upadhyaya, 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.


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

  • people who have had COPD Exacerbations
  • carers of people who have had COPD Exacerbations
  • health and social care professionals - with experience of COPD Exacerbations.

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 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 COPD Exacerbations 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 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 COPD Exacerbations PSP will carry out a consultation to gather uncertainties from patients, carers and clinicians. A period of 2-3 months will be given to complete this exercise (which may be revised by the Steering Group if required).

The COPD Exacerbations PSP recognises that the following groups may require additional consideration:

  • BAME Populations
  • Those living with mental health problems

Existing sources of evidence uncertainties may also be searched. These will include existing evidence synthesis and clinical guidelines, and a search of on-going research studies.

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 by Mr Jaber Alqahtani 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 Mr Jaber Alqahtani. 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 Mr Jaber Alqahtani. 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 COPD Exacerbations. 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.

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 Professor John Hurst.

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

Agreement of the Steering Group

The COPD Exacerbations PSP Steering Group agreed the content and direction of this Protocol on 15th March 2019.