Palliative and end of life care Priority Setting Partnership (PeolcPSP) Refresh protocol

Contents

Published: 12 September 2023

Version: 1

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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 this Refresh of the Palliative and end of life care 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 Coordinating Centre (NIHRCC), University of Southampton. 

In 2013/14, Marie Curie worked with the James Lind Alliance (JLA) and more than 30 other organisations to identify the top 10 unanswered research questions, or evidence uncertainties, in palliative and end of life care as part of the Palliative and end of life care Priority Setting Partnership (PeolcPSP). The project identified 83 questions, initially prioritised 28 of them and further prioritised those to a top 10. The project was co-funded by a total of 10 organisations and represented the first time that patients, families and health and social care professionals had been consulted systematically and in large numbers about what they saw as the most pressing areas for research in this field. Researchers were not allowed to take part to allow people impacted by research findings to have their say.

These priorities, published in a report in January 2015, have been influential in the field of palliative and end of life care research, influencing, for instance, strategic funding opportunities from the two largest funders of palliative and end of life care research in the UK, the NIHR and Marie Curie. The PeolcPSP published a number of additional reports, such as a grant mapping analysis and a thematic analysis of the first survey.

It has been 8 years since the publication of the top 10 evidence uncertainties in Peolc and there are occasional questions asked about the ongoing validity of the identified priorities. A number of research grants have been funded based on the PeolcPSP priorities and Marie Curie is currently carrying out an extended update of the grant mapping exercise from 2017, to identify which of the top 11 questions have been most and least addressed by grants awarded since 2015. Marie Curie has also asked an information scientist who frequently works with the JLA, Kristina Staley, to carry out a renewed search to identify whether any of the 83 questions might have been addressed and answered since the questions were identified in 2015.

In addition, palliative and end of life care has been affected by the Covid 19 pandemic. Preferences for place of care have shifted into the community, an effect precipitated by the pandemic, but not reversed since. It is a valid question to ask whether changes during and beyond the pandemic have had an impact on the prioritisation of unanswered questions relating to palliative and end of life care.

We therefore feel that it is now time to re-examine those priorities, in light of the changes that we have all experienced since 2015 and the research that has been funded since then.

Aims, objectives and scope of the PSP

The aim of the Refresh of the Palliative and end of life care PSP is to identify the unanswered questions about palliative and end of life care from patient, carer and clinical perspectives and then prioritise those that patients, carers and health and social care professionals and the commissioners of heath and social care services agree are the most important for research to address.

The objectives of the PSP are to:

  • Work with patients, carers and health and social care professionals and commissioners to identify uncertainties about the experience of dying, death and bereavement, including palliative and end of life care, to improve the experience of people with a serious, life-limiting illness and/or those close to them.
  • To agree by consensus a prioritised list of those uncertainties.
  • To work with researchers and research funders to share the results of the PSP and process to inform the development of future research agendas and funding strategies.

The scope of the Refresh of the Palliative and end of life care PSP is defined as:

  • Experience of living with a serious, life-limiting illness, and of dying, death and bereavement, including palliative and end of life care, eg treatment, care, discussion of diagnosis and prognosis, care planning, experiences and support needs of carers of people with terminal illness and experiences of bereavement.

The PSP will exclude from its scope questions about:

  • Curative treatment and prevention
  • Age - children

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 health and social care professionals , as individuals or representatives from a relevant group. It also includes research funder representatives as observers.

The Refresh of the Palliative and end of life care PSP will be led and managed by a Steering Group involving the following:

Patient and carer representative/s:

Members of the Lived Experience Group and/or Marie Curie Research Voices Group:

  • Alexandra Reece
  • Dr Angela McCullagh
  • Beverly Melnyk-Jones
  • Chris Pavlakis
  • Kate Glover-Jones
  • Linda Cooper
  • Pavanjit Singh
  • Rebecca Boyce
  • Saira Latif Mian
  • Tabitha Baker and
  • Jessica Bush, Public Involvement and Engagement Manager, Marie Curie

Clinical representative/s (health and social care professionals):

  • Dr Ben Bowers, Wellcome Post-Doctoral Research Fellow, Honorary Nurse Consultant in Palliative Care and Queen’s Nurse, University of Cambridge, and Queen’s Nursing Institute Community Nursing Research Forum
  • Alison Penny, MBE, Coordinator of the National Bereavement Alliance and Director of the Childhood Bereavement Network
  • Melanie Hodson, Head of Information Support, Hospice UK
  • Dr Jamilla Hussain, Consultant in Palliative Medicine and Senior Research Fellow, Bradford Teaching Hospitals NHS Trust and Bradford Institute for Health Research
  • Anne Cullen, Research Lead, Association of Palliative Care Social Workers
  • Dr Sarah Holmes, Medical director, Marie Curie
  • Dr Clifford Jones, GP Wales, GP in Ebbw Vale, RCGP EOLC lead, hospice trustee, Primary Care Director and GP
  • Marianne Macleod, OT Palliative Care team lead in NHS Fife, also co-chairs Scottish Network for Acute Palliative Care
  • Dr Ollie Minton, Clinical Lead for Palliative Medicine, Macmillan Cancer Support

Project coordinators:

  • Dr Sabine Best, Marie Curie
  • Dr Briony Hudson, Marie Curie
  • Phillipa Ashcroft, Marie Curie
  • Isabelle Olson, Marie Curie
  • Noura Rizk, Marie Curie

James Lind Alliance Adviser and Chair of the Steering Group:

  • Dr Louise Dunford, James Lind Alliance and Associate Professor at University of Warwick Medical School

Information scientist

  • Kristina Staley, Director TwoCan Associates

Observers:

  • Dr Mary Rabbitte, All Ireland Institute for Hospice and Palliative Care (AIIHPC)
  • Josie Jackson, Health and Care Research Wales
  • Alan McNair, Chief Scientist Office, Scotland
  • Dr Janet Diffin, Health and Social Care R&D Division of the Public Health Agency, Northern Ireland
  • Claire Kidgell, National Institute for Health and Care Research (NIHR)
  • Jennifer Bedford, Motor Neurone Disease Association
  • Naomi Beaumont, Strategic Lead, Economic and Social Research Council (ESRC)
  • Michael Bowdery, Head of Programmes, Health and Care Research Wales

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.

The Lived Experience Group

Running alongside the Steering Group, a group of people with lived experience will be established to ensure that the voices of people affected by dying, death and bereavement are prominently included throughout the project. Up to 20 people with lived experience will be recruited to this group, which will be managed by Jessica Bush, the Public Involvement and Engagement Manager at Marie Curie.

This group will meet regularly over the course of the project to discuss current issues and feed into the shaping of the project. The Lived Experience Group will be represented at the Steering Group meetings by six members of the group and Jessica Bush. All lay members of the Steering Group are also members of the Lived Experience Group.

The Lived Experience Group will be supported by Jessica Bush and signposted to the Marie Curie Information and Support line to access support where necessary. The Marie Curie Research Voices Group is also open to members of the Lived Experience Group or vice versa.

Partners

Organisations and individuals will be invited to be involved with the PSP as stakeholder 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 are living with a serious life-limiting condition or have had experience of dying, death or bereavement.
  • Carers, family or friends of people who are living with a terminal condition.
  • health and social care professionals - with experience of palliative and end of life care as specialists or generalists.

There might also be a small number of funding partners who commit to support the project financially.

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 that this might 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 Marie Curie Research and Steering Group members’ networks, and will include partner organisations identified through the original JLA PSP. Potential partners will be contacted and informed of the establishment and aims of the JLA Research Priorities Refresh. Building on learning from the previous JLA Peolc priority setting activities, we will seek to engage a smaller number of people in our steering group than in the previous PeolcPSP, but also generate and maintain a network of partners who will be informed and engaged about the project, but who will have less input into project decisions. We will seek to include some previous partners in the JLA refresh to maintain continuity.

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 or a webinar. It may be carried out as part of steps 1 and/or 4. 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.

Within Marie Curie we will make use of the different functions of the organisation (including caring services, community engagement teams, creative, communications, volunteering, internal communications) and seek guidance from them about the best ways of promoting the project via all channels open to Marie Curie (email lists of supporters, volunteers and fundraisers).

We will also ask our stakeholders to explore options open to them via their professional connections and networks. A launch event will be held prior to the launch of the first survey to highlight impact from the previous PeolcPSP and emphasise the opportunity to the public to influence future Peolc research.

Step 3: Seeking research approvals from the UCL research ethics committee

Among other PSPs there has been variation in whether ethical approvals have been sought from University research ethics committees. We feel that it would be beneficial to seek ethical approval for this project and will pursue this via Briony Hudson’s honorary research contract with UCL.

Step 4: Identifying evidence uncertainties

The PeolcPSP Refresh will carry out a consultation to gather uncertainties from patients, carers and health and social care professionals. This will include the distribution of a survey using an online platform to members of the public, health, social care professionals with an interest in palliative and end of life care and/or lived experience of living with a serious life-limiting illness or as a carer, family member or friend.

The survey will include demographic information and one open question to identify unanswered questions they have in relation to palliative and end of life care or the experience of living with a serious life-limiting illness. A period of 3 months will be given to complete this exercise (which may be revised by the Steering Group if required). Interim analysis will be undertaken at 6 weeks to enable any changes in dissemination strategies to be implemented.

Given that we know inequities exist in access to palliative care, it is essential that we reach as diverse a sample as possible. The Steering Group will consider the following methods to facilitate the recruitment of a diverse sample:

  • offering the option of completing the survey over the telephone or on paper
  • providing the survey in different languages if requested
  • utilising existing networks and events to share information about the project and recruit participants to the survey (eg community engagement teams, hospices, conferences and/or other networks that steering group members are connected to)
  • completion of a Marie Curie equality impact assessment

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 Kristina Staley (information scientist) 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 Steering Group will also advise on out-of-scope areas. 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 information scientist with support from the Marie Curie research team or with additional resource. The PSP Refresh 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 and 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 Kristina Staley. 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 changes made at the final workshop, 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 palliative and end of life care. This will involve input from patients, carers and clinicians via a second survey. 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 25-30) will be taken to a final priority setting workshop. Where the interim prioritisation does not produce a clear ranking or cut off point, the Steering Group will decide which questions are taken forwards to the final prioritisation, ensuring that preferences from all respondent groups are taken into account.
  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 adaptations needed to ensure inclusivity and accessibility.

Timeline

Key dates and milestones:

  • Jan 23: Scoping: completion of PID and draft budget, preparatory meetings with JLA
  • Feb 23: Stakeholder mapping and engagement: previous and new
  • Apr/May 23: PPI recruitment
  • May 23: PPI Steering Group member pre-meet w/c 16th May (Jessica, Briony, Sabine)
  • May 23: First Steering Group meeting, review ToRs, protocol
  • June 23: Ethics submission (to be submitted by 5th June, meeting is 26th June)
  • July 23: Ethics submission outcome known
  • Early July 23: Second Steering Group meetings (concentrating on survey comms)
  • Early September 23: Survey open; comms
  • Oct 23: Interim analysis
  • Jan/Feb 24: Review of survey results, formulation of research questions, within and out of remit
  • Feb 24: First survey closes
  • Feb 24: In person Steering Group: Review of survey results, formulation of research questions
  • Mar 24: Review of survey results, formulation of research questions, design of 2nd survey
  • Mar/Apr 24: 2nd survey open
  • May 24: 2nd survey open
  • Jun 24: Analysis of 2nd survey – quant
  • Jul 24: Steering Group to review second survey results
  • Sep 24 Prioritisation workshop
  • Sep/Oct 24: Report writing, design, dissemination
  • Nov 24: Publication of report – peer reviewed paper
  • Nov 24 - Oct 25: Further analyses, eg by nation/topic/group, preparation and publication of peer-reviewed papers, conference presentations researcher workshops, engagement with funders

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.

The following outputs will be generated from the project:

  • An event to launch the first survey – eg a webinar highlighting impact from the previous PeolcPSP and spotlighting the opportunity to influence future palliative and end of life care research.
  • A website to share information about and findings from the project.
  • A twitter account to share information and findings about the project.
  • An updated list of the top 10 priorities for Peolc research, informed by patients, carers, health and social care professionals.
  • An event to launch the updated priorities.
  • A report outlining key findings and their potential implications.
  • A blog sharing the updated top 10.
  • Peer reviewed papers and conference presentations outlining the methodology and findings.

It should be noted that the priorities are not necessarily worded as research questions. The Steering Group will discuss how they will work with researchers and funders to establish how to address the priorities and to work out what the research questions are that will address the issues that people have prioritised. The dissemination of the results of the PSP will be led by Briony Hudson and Sabine Best and form part of the project, extending the timeline by 12 months. This is likely to include workshops for researchers in order to translate priorities into research questions where relevant.

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 and peolcPSP@mariecurie.org.uk.

Agreement of the Steering Group

The Refresh of the Palliative and end of life care PSP Steering Group agreed the content and direction of this Protocol on 7th July 2023