Reflections on the impact of the Lived Experience Group in the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership Refresh

Abstract

Background

In 2025, Marie Curie and other partners launched the results of a refreshed Priority Setting Partnership with the James Lind Alliance, to identify priorities for palliative and end of life care research, based on the views of people affected by serious life limiting illness. To our knowledge, this was the first Priority Setting Partnership to have a dedicated group of people with lived experience as equal partners in the research. This paper provides reflections for other researchers considering embedding a Lived Experience Group into future Priority Setting Partnerships and provides evidence of the positive impact that this can bring.

Main text

Data on involvement impact and experience was collected using the Public Involvement in Research Toolkit (PIRIT), semi-structured interviews with Lived Experience Group and Steering Group members, and a short online survey for Lived Experience Group participants. The PIRIT tracker recorded 66 impacts throughout the project, which included shaping the project, refining data collection tools, influencing language, encouraging diverse responses, and aiding dissemination.

Conclusions

Forming a Lived Experience Group to support the refresh of the Palliative and End of Life Care Priority Setting Partnership ensured that people with lived experience of dying, death and bereavement had a clear route for involvement in all stages of the project. This regular and consistent engagement required considerable resource but shaped the project in several ways and ultimately improved its quality.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-025-00774-4.

Plain language summary

The James Lind Alliance is an organisation that seeks to find out what people with lived experience see as the priorities for research about different topics. There is a set way of doing this, which involves two online surveys and a workshop to decide which of the questions identified are the most important for research to address.

In 2025 Marie Curie, in partnership with the James Lind Alliance and other organisations published a refresh of the Palliative and End of Life Care Priority Setting Partnership first published in 2015. A Lived Experience Group was set up to enable people affected by serious life limiting illness to shape all aspects of the project. This paper provides reflections from members of the Lived Experience Group and the Steering Group for the project on the process and impact of working in this way.

Working with the Lived Experience Group brought insights which influenced and benefited the project, in several ways, from shaping the scope of the project, tools for data collection, methods of analysis and dissemination of the findings.

The process of establishing and engaging with the group throughout the project was resource intensive but helped to ensure the project met its aims of identifying priorities for future palliative and end of life care research that aligned with the priorities of people with lived experience. Based on our collective experiences, we provide considerations for other projects looking to work in a consistent and impactful way with people affected by serious life limiting illness.

Supplementary Information

The online version contains supplementary material available at 10.1186/s40900-025-00774-4.

Background

Across the UK, and internationally, the number of people who need palliative care is increasing steeply [1, 2]. About 90% of people who die are estimated to need palliative care [3]. Despite this, In the UK in 2022, only 0.23% of health-related research project and programme funding was allocated to this topic [4]. Given the small amount of research funding allocated to this field, it is imperative that research that is funded, aligns with the priorities of people affected by dying, death and bereavement. The James Lind Alliance (JLA) supports and facilitates Priority Setting Partnerships (PSP) that enable patients and people around them, including family members, informal carers and health and social care professionals to identify and prioritise evidence uncertainties that could be answered by research [5]. In 2015, Marie Curie (in partnership with other organisations) launched a Palliative and End of Life Care Priority Setting Partnership, which generated a list of priorities for palliative and end of life care research. Over 1400 people with life limiting illnesses, their families and health and social care professionals contributed their views to this process [6]. Since publication, much progress has been made in addressing these priorities through funded research, targeted grant funding calls, and works of individual researchers [7], but gaps in knowledge relating to these priorities remain.

As a decade has passed since the identification of these initial research priorities, in 2025 Marie Curie, in partnership with the James Lind Alliance, with co-funding from the Motor Neurone Disease Association and the UK Research and Innovation (UKRI) published a refresh of this Priority Setting Partnership.

The UK standards for public involvement outline a framework describing public involvement in research. They are intended to promote reflection and learning around public involvement in research and form the framework for this paper [8].

Underlying project: a refresh of the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership

Published in 2025, the Palliative and End of Life Care Priority Setting Partnership refresh [9] aimed to: (1) Identify the unanswered questions about palliative and end of life care from patient, carer and health and social care professionals, and (2) Prioritise the identified questions for future research. A summary of the methodology and associated timeline of this project can be found in Fig. 1, more information is available in the final report [9].

Fig. 1.

James Lind Alliance methodology and timeline for the Palliative and end of life care Priority Setting Partnership [9]

Forming the Lived Experience Group

A Lived Experience Group was established to support and inform all stages of the project. Various channels were used for recruitment to the Lived Experience Group including the Marie Curie Research Voices Group, newsletters from UK-wide and nation-specific organisations and networks and blog posts [10].

Each prospective member discussed their experiences, motivations, and the level of involvement that they would like to have with Marie Curie’s Public Involvement and Engagement Manager (JB) prior to joining the group.

How were the Lived Experience Group involved in the project?

Members of the Lived Experience Group attended nine online meetings between May 2023 to February 2025, when the final report was launched [9]. Prior to each meeting, an agenda and accompanying documents were circulated. A summary and action points were circulated after meetings. Members were also encouraged to contribute via email if they were unable to attend the meetings.

Within the project, there were different subgroups that members could join, the Steering Group and the Data Subgroup. Six members of the group also joined the Steering Group, alongside health and social care professionals, representatives from charities and members of Marie Curie’s research team. Eight members joined the Data Subgroup which met online, six times for a total of twelve hours to discuss and refine the categorisations of data generated from the project’s initial survey. There were also different types of activities that people could opt into or out of. For example, independent desk-based activities, such as reviewing project documents, or more interactive activities such as piloting surveys or joining group discussions. This enabled people to participate in aspects of the project which they felt best aligned with their skills or interests.

Support, reward & recognition

Support for members of the group came via multiple avenues including regular check-in calls and emails with JB and access to free telephone support lines delivered by the lead organisation. A safeguarding plan was created which outlined a process should any safeguarding concerns be raised. This was created in partnership with the safeguarding lead for the host organisation.

All members of the group were offered renumeration for their involvement, as well as reimbursement of expenses such as carer costs to enable involvement. Reimbursement rates were in line with National Institute for Health and Care Research Guidelines [11]. Previous research has noted how remuneration can be seen as a display of acknowledgement for people’s time and input [12].

Aim

This paper reports reflections on the impact and experience of the Lived Experience Group within the 2025 refresh of the James Lind Alliance Palliative and End of Life Care Priority Setting Partnership.

Methods

This comment is reported in line with the Guidance for Reporting Involvement of Patients and Public (GRIPP2) Short Form [13].

Gathering feedback on involvement

Feedback on involvement was collected through three approaches:

• the Public Involvement in Research Toolkit (PIRIT) [14],

• semi-structured interviews

• an online feedback survey

The Public Involvement in Research Toolkit (PIRIT)

The PIRIT tracker [14] is a spreadsheet for recording public contributions in a research project, the difference they make, and how each contribution corresponds to the UK Standards for Public Involvement. After each Lived Experience Group meeting JB entered information into PIRIT relating to (anonymous) contributions of members, including direct quotes, the impact of each contribution (i.e., what was achieved or influenced) and which Standard [8] each contribution related to.

Interviews

At the end of the project, all Lived Experience Group Members and Steering Group members were invited to take part in an online interview with a researcher (JC), who was not known to them. The interviews encouraged reflection on their involvement, feedback on the process, experience, and impact of the Lived Experience Group and any recommendations for future research (appendix 1).

Online feedback survey

Concurrent to the semi-structured interviews, an online survey was circulated, in case any members preferred to share their experiences and reflections via a survey.

The survey explored views on communication and support from the project team, experiences of involvement and views about the impact of the Lived Experience Group. Informed consent was gained at the beginning of the survey. The survey was developed in MS Forms and took approximately 10-min to complete. The questions from the survey are available in appendix 1.

Data analysis

Interviews were recorded, written out word-for-word, made anonymous and then uploaded into a software program called NVivo for analysis. The written interviews were reviewed and coded according to the UK standards. All the information from PIRIT, interviews, and surveys was organized into tables for comparison. Analysis of data from all sources followed a Framework Analysis. Quotes from surveys, PIRIT entries, and interviews were matched with the standards when appropriate. If something didn’t fit into the existing standards, new labels were created. In addition, the types of impact recorded in the PIRIT tracker, were grouped and summarised to give an overview of the impact of the Lived Experience Group on the project.

Results

Twenty people with lived experiences relating to living with a serious life-limiting illness (n = 1), caring for someone with a serious life-limiting illness (n-2) and of recent bereavement (n = 17) formed the Lived Experience Group (Table 1).

Table 1.

Demographic characteristics of the LEG (n = 20)

Characteristic	N (%)
Lived experience status
Person living with life limiting illness	1 (5)
Carer/family member	2 (10)
Bereaved carer	17 (85)
Gender
Male	3 (15)
Female	17 (85)
Nation of residence
England	13 (65)
Scotland	2 (10)
Wales	2 (10)
Northern Ireland	1 (5)

Three members of the Lived Experience Group and one member of the steering group were interviewed. Interviews lasted between 15 and 40 min. Four members of the group completed the online feedback survey.

Overall impact of the Lived Experience Group

Sixty-six key impacts were recorded in the PIRIT tracker over the course of the project. These impacts could be broken down into the following categories: shaping the project, refining data collection tools, adapting language to make project accessible, encouraging diversity in responses, supporting dissemination (Table 2).

Table 2.

The types of impact of the Lived Experience Group on the project

Type of impact	Number of impacts recorded in PIRIT tool (n = 66)	Examples of impact
Shaping the project	7 (11%)	• Co creating a ways of working document • Changing the approach for the data subgroup • Changing the way LEG impact data is collected
Refining data collection tools	17 (26%)	• Piloting and advising on two possible formats for the second survey
Adapting language to make project accessible	34 (51%)	• Influencing the wording and definition of palliative and end of life care used in the project e.g. using the term “serious life limiting illness” and emphasising that the survey was open to both people living with serious life limiting illness, their carers, friends and family members • Changes to the wording of items for survey 2
Encouraging diversity in in responses	4 (6%)	• Emphasising on website the different response options available • Discussing and providing contacts for groups that represent minority groups to encourage greater diversity among respondents
Supporting dissemination	4 (6%)	• Writing the foreword for project • Commenting on final report, papers and other outputs • Advocating for all 24 priorities to be included in the final report, not just the to 10 • Speaking at launch event

Alignment with the UK standards for Public Involvement

Below we present each of the Standard for Public Involvement, actions we took to align with that standard and reflections from the Lived Experience Group in relation to each. More information is available in Table 3.

Table 3.

Summary of data synthesised in framework analysis to illustrate how patient and public involvement met the UK Standards for Public Involvement

UKRI Standard for Public Involvement	Standard sub-theme	How did the project meet the Standard	PIRIT, interview and survey feedback
Inclusive Opportunities Public involvement partnerships are accessible and include a range of people and groups, as informed by community and research needs Research to be informed by a diversity of public experience and insight, so that it leads to treatments and services which reflect these needs	Have barriers to involvement, such as payment for time or accessible locations for meetings been identified and addressed?	Reimbursement for people's time was guided by the National Institute for Health and Care Research (NIHR) guidance and was agreed with the group Meetings on-line with flexible meeting timings There was a challenge to accommodate all people’s needs, particularly those who were in full time work	“The other advantage was that you could do it remotely. I wasn't involved in the last exercise, which I think was done some 10–15 years ago but I wasn't involved in that, but I suspect they must have done that all in person and I couldn’t have done that.” (Interview) “I feel we got reasonable enough indication of that before you even volunteered to say, look, you are going to be called upon this amount of time over this number of weeks—is that feasible?” (Interview)
		Members completed an initial survey as part of the JLA Shared Interests and Privacy Form which included questions on any access needs or barriers to involvement The involvement and engagement manager spoke to each LEG member prior to their involvement to explore accessibility needs	“I am Carer and as such I would like to request to please give me as much advance notice as possible so that I can work around my care responsibilities and arrange care cover.” (Shared Interests and Privacy Form) “Limited availability. Please set meeting dates well in advance. Occasional 1–1 briefings to catch up as needed would be very welcome as offered recently.” (Shared Interests and Privacy Form)
	Is there choice and flexibility in ways to partner?	Members were given the opportunity to input either in on-line meetings or via email Please also see following entry below	“I think everybody who wants to be involved should be given a chance to be involved. Whether it's just like, actually they could say meetings aren't my thing, but I'm really happy to review the list of questions or whatever, you know, maybe give different options for engagement” (Interview)
	Are people and groups most affected by, and interested in the research, involved from the earliest stages?	The LEG was set up at the start of the project in May 2023 and informed all stages of the research. There were a range of people affected by death dying and bereavement involved in the group Recruitment avenues were wide ranging and included a charities and networks focussing on palliative and end of life care across the four nations of the UK Please see the project website for a list of our supporting partners	80% of survey respondents that the individuals participating represented a broad range of perspectives on the topics discussed with 20% remaining neutral “First-gen immigrant, unpaid carer for a family member terminally ill, on low-income household, neuro atypical, keen to contribute to health and care studies as a lay member.” (Information gathered using Microsoft Forms) “I have lived experience as a bereaved family member and am also currently caring for a family member with a terminal illness. I am passionate about the importance of good palliative and end of life care, and how research can improve this.” (Information gathered using Microsoft Forms) “I am 50 years old diagnosed with incurable inoperable appendix cancer and therefore palliative. I have been given roughly two years to live in Dec 2021 but I am so far stable. I am currently going through maintenance chemo and am particularly interested in what happens next for patients in terms of end of life care and support. I have had my own experiences so far of this which I believe falls below the standard and processes I expected.” (Information gathered using Microsoft Forms)
	How will communication about partnering be tailored to the needs, motivations and interests of different people and groups?	When recruiting patients and the public people were given a choice of involvement opportunities: · Completing a survey · Being a member of the LEG · Being a member of the Steering Group · Being members of both the LEG and the Steering Group · Joining the project mailing list	"There were some meetings that I was not able to attend because of timings of these meetings and with care issues or clashes. Some of the information received was little complex for me to review these remotely. But the project team shared the information (and further provided the necessary details in the meeting) to allow me to meaningful contribute into the project"(Survey)
		Further opportunities arose throughout the project including: · Joining the data subgroup · Commenting on the final report · Writing a foreword in behalf of the LEG for the final report · Commenting on draft articles and being a co-author · Attending the final prioritisation workshop · Attending the launch summit Project website	"Thank you for sharing this amazing report with us all in draft. I actually felt incredibly moved reading it, realising all the collaborative time and effort that it has taken to reach this point.” (PIRIT).
Working together Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships	Has the purpose of public involvement been jointly defined and recorded? Is there is a shared understanding of roles, responsibilities and expectations of public involvement?	Terms of reference were shared with the LEG and agreed Ways of working were discussed at the first meeting and agreed Members of the LEG were also represented on the project steering group and the data subgroup	The group were asked if they were happy to share email addresses to ease communication—there was agreement from the group. (PIRIT) “Coming back to sort of the mechanisms of facilitating these meetings as well, I mean, I think one of the other things that I was thinking was about people who are in the steering group as well as in this group. I don't know whether it's worth them having a meeting prior to these meetings to sort of get it all together, get it's together.” (PIRIT)
	Have the practical requirements and arrangements for working together been addressed?		100% of survey respondents either agreed or strongly agreed with the following statements: · I had a clear understanding about the overall project · I had a clear understanding about my role as a member of the Lived Experience Group · The support I needed to participate was available (e.g., payment for involvement, travel and other out-of pocket expenses etc.) · I had enough information to contribute to the topics being discussed · The timings of meetings suited my needs · Presentations and information were clearly presented by the project team
			"All was clearly laid out and at no time did I feel under any pressure, only excitement at being involved" (Survey) Involvement expectation was clear and realistic. (Survey) “It was very brief point about in terms of the mechanism of about where the way that we work. So certainly personally, from my point of view, I'd be really happy to be sent papers to comment on and then come back to the meeting with those rather than have those presented and then have to comment on it. I don't know if that helps with the before or after, but I think the logistics of how we work and whether it's necessary for everybody to be able to do that would sort so long as enough of us are prepared to do that, then maybe that would give a good basis.” (PIRIT)
	Have all the potential different ways of working together been explored, and have these plans and activities been developed together?	Ways of working were discussed and agreed with the group	“I think one of the good things was that they kind of divided us up into little breakout groups to do bits of this. So, we would come back occasionally and have you know, a big meeting but generally we were able to get on.” (Interview) “So yeah, there's been a mixture of things to do in isolation and things to do with others.” (Interview)
	Have individuals’ influence, ideas and contributions’ been recognised and addressed?	Meetings were facilitated in a way that encouraged everyone to be able to share their views and opinions The ways of working discussions and documents included creating and protecting a safe space for discussions within meetings	“I felt that when we were talking about the various aspects, you know, obviously some people were at very different end of life situation to me. But it was all handled very sensitively. Because, you know, you cannot say that somebody's opinion or experience is not as good as yours. You know, it had to be handled in all comers were welcome.” (Interview)
Support and Learning We offer and promote support and learning that builds confidence and skills for public involvement in research We seek to remove practical and social barriers that stop members of the public and research professionals from making the most of public involvement in research	Is there a range of support to address identified needs?	All members were offered a chance to feedback after meetings and share any concerns with the involvement lead for the project There was a mixture of on-line meetings and opportunities to feedback via email People were positive about the support offered to them	100% of survey respondents strongly agreed that they were supported in their role “I am a librarian by background. I think it would be nice perhaps to being able to get more involved in that in terms of suggesting terms. Particularly if it's somebody who's not an information specialist within the sphere of palliative care, because I think some of it, and I'm not being disrespectful at all to the amazing work that was done because it was excellent. I'm just saying perhaps in future as something that could be looked at, that might be a useful exercise to do just so. Yeah. For sake of completeness.” (Interview)
	Is there a culture of learning by doing, building on and sharing that learning for researchers, staff and the public?	Involvement provided people with learning about research and research methodologies Members of the LEG were also part of the research data subgroup and assisted ‘hands on’ with the analysis of the first survey A number of articles were published both during the project and afterwards including information about PPI	“So, it was an interesting way for me to learn how that research process works at probably the sort of five-star red carpet belt and braces level.” (Interview) "I think because of my experience of research I was able to frame my comments in a way that made them usable for the team" (Survey)
Governance Involve the public in research management, regulation, leadership and decision making Public involvement in research governance can help research be more transparent and gain public trust	Are public voices heard, valued and respected in decision making?	Members if the LEG had a say in how the group would link to the project steering group, for example timing of meetings Members of the LEG completed an interests and privacy form which shared, for example, a code of conduct, a shared vision for the project, consent to publicity, data protection etc There were several occasions where the LEG reached a consensus with decisions discussed at the Steering Group, for example the response options for the second survey in terms of how priorities were ranked. Members of the LEG also sat on the SG and so could represent the views of the LEG within decisions made by SG	“I was thinking we need to do a bit of both, don't we? Because if we meet before then we are putting information in. But what comes out as a result of that discussion, we may need to talk about. It may well be necessary to pose a question that we can all make a comment to and you can take the emails and work on them. You know to avoid having constant meetings where we rehash things and you know it can we can get down to being dealing with such minutia either that we're not kind of moving forward. Well, I was thinking that if we got a kind of an agenda but with maybe slightly more detail than normal agendas are so that we would have a chance to think you know, you could ask us a question.” (PIRIT) “Yeah, I do quite like this business of that ranking the whole lot. And I think it gives more information. I'm not quite sure if I'm right on that, but I think it must, although it's harder work, potentially, possibly harder work for the respondents, but as you say, it did work last time.” (PIRIT)
	Is there visible and accountable responsibility for public involvement throughout the organisation?	Involvement in Marie Curie’s Research and Policy work is supported and championed by the Executive Director of Policy and Research. There is also a full-time role dedicated to supporting involvement across the directorate There is a culture of involvement in research, policy and campaigning. Marie Curie’s Research Voices Group was set up in 2013 to ensure the voice of lived experience informs our work. It currently has a diverse membership of circa 60 people Lived experience is key to the charity’s Research, Policy and Public Affairs Strategy In the wider charity work, people are involved in a range of activity from volunteering to support our services to sharing stories about their experiences and supporting fundraising	Not mentioned in PIRIT, interviews or survey responses
	Are realistic resources (including money, staff, time) allocated for public involvement?	There is a dedicated Public Involvement and Engagement Manager who led involvement in this project and was allocated time to do so	“I like how sort of respectful this has been run in terms of people's time and input and our expectations, I think, have been incredibly well managed.” (Interview)
Communications Use plain language for well-timed and relevant communications, as part of involvement plans and activities Communicate with a wider audience about public involvement and research, using a broad range of approaches that are accessible and appealing	Has a communications plan been developed for involvement activities?	There was a communications plan for recruitment for the LEG as well as promoting the JLA PSP surveys. This was led by the Research Communications Manager and the research team Project website Members of the LEG will be co-authors on journal papers A blog was published on the James Lind Alliance website early on in the project about the Lived Experience Group	Not mentioned in PIRIT, interviews or survey responses
	Are the needs of different people being met through inclusive and flexible communication methods?	LEG members provided suggestions regarding the accessibility of the survey eg offering a range of media to complete the survey such as on-line, paper, large print Members of the LEG were offered hard copy papers if needed In terms of wider communication, members of the LEG made several suggestions to encourage patient and public responses to the surveys. For example, Including a definition of palliative care on the project website Altering the term life limiting to serious life limiting illness to add clarity for the proposed audience	“When you first sent the email about the replies you were getting, I was just wondering being part of the general public myself, is it an understanding of what palliative care is and what it entails that makes people hesitant to answer?” (PIRIT) “For some people, this is not just life limiting, but life ending and that might make this hard to answer. Cystic fibrosis is a life limiting disease but has a considerably different impact than being told, you know, you have cancer and this is stage four and you are going to be dying. So just saying'life limiting'you may lose a lot of information from people who are not quite sure where they fit in that statement.” (PIRIT)
	Are you sharing your public involvement learning and achievements, good and bad?	There will be an evaluation report to include successes, challenges and areas for future consideration Public involvement included in project report including a foreword from a member of the LEG	Nt mentioned in PIRIT, interviews, or survey responses
Impact Seek improvement by identifying and sharing the difference that public involvement makes to research Understand the changes, benefits and learning gained from the insights and experiences of patients, carers and the public	Are the public involved in deciding what the assessment of impact should focus on, and the approach to take?	It was agreed at the outset that we would use the PIRIT tool to assess impact of involvement in the project for people with lived experience. A short survey was circulated after each LEG meeting to capture feedback from the group on their impact In addition, we carried out semi-structured interviews and a feedback survey at the end of the project The SG for the project will continue to meet for an additional year beyond the publication of the results, to maximise opportunities for impact. Members of the LEG were invited to sit on this group to continue to input	“ it would be really helpful to get this [PIRIT] done after every meeting rather than end of the project because the knowledge and information is fresh when you fill it out “ (PIRIT)
	Is it clear what information to collect to help assess impact, including who has been involved and how?	The PIRIT tool lays out clearly, through guidance and samples what information is needed to assess the impact of PPI against the UK Standards	“The enthusiasm with which all those all that information and the statistics, the statistics and the back was delivered, you know, by the people who had been working on it like yourself? You know, that was really fun to sort of think, OK, yeah, this is great. This is what we've done.” (Interview)
		LEG members appreciated how evidence of the impact of their involvement was taken into account and report both to them, and external audiences	“We've done this bit and then it went out to the world and you know, this is what they've come back with.” (Interview)
	Are there processes in place to help reflect on public involvement?	A feedback form was sent out to members of the LEG. Also, PIRIT draft entries were shared with members. A feedback survey was sent out after the project ended to ask members to reflect on their involvement with the LEG and the overall project. Semi structured interviews were also carried out to reflect on involvement in the project	"This opportunity of getting involved in this project has influenced me in very positive way to make me feel motivated to do more and get involve with Marie Curie much more then at present."(Survey)

Inclusive opportunities

UK Standard: Public involvement partnerships are accessible and include a range of people and groups, as informed by community and research needs

Prior to the start of the project, each member of the Lived Experience Group had an initial conversation with the Public Involvement and Engagement Manager (JB). This was to develop rapport, explore any involvement requirements and to discuss the project and what involvement would entail. The accessibility requirements of each member of the group were also reviewed through the completion of a Privacy and Security Impact Assessment Form. Members of the group appreciated these initial conversations.

“I feel we got reasonable enough indication of that before you even volunteered to say, look, you are going to be called upon this amount of time over this number of weeks—is that feasible?” (Interview).

To enable inclusive involvement, meetings were arranged at times that suited most group members and alternative ways to be involved were offered. Meetings were also recorded, and minutes provided. A range of options for providing feedback were available e.g., within meetings, over email or via discussion with JB.

"There were some meetings that I was not able to attend because of timings of these meetings and with care issues or clashes. Some of the information received was little complex for me to review these remotely. But the project team shared the information (and further provided the necessary details in the meeting) to allow me to meaningful contribute into the project"(Survey).

Working together

UK standard: Work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships

At the outset of the project, terms of reference and ways of working documents were co-created. These documents outlined different roles and responsibilities within the project and joint expectations for how everyone would work together.

“All was clearly laid out and at no time did I feel under any pressure, only excitement at being involved.” (Survey)

Feedback from the Lived Experience Group influenced how the groups within the project (the steering group and data subgroup) interacted and how channels of communication were maintained.

“Coming back to sort of the mechanisms of facilitating these meetings as well, I mean, I think one of the other things that I was thinking was about people who are in the steering group as well as in this group. I don't know whether it's worth them having a meeting prior to these meetings to sort of get it all together, get it's together.” (PIRIT).

During each Lived Experience Group Meeting upcoming activities were reviewed to ensure everyone understood and had the opportunity to contribute as necessary to upcoming activities. We also sought to ensure everyone had the opportunity to contribute, and that all experiences and viewpoints were respected.

“I felt that when we were talking about the various aspects, you know, obviously some people were at very different end of life situation to me. But it was all handled very sensitively. Because…, you cannot say that somebody's opinion or experience is not as good as yours. You know, it had to be handled, and all comments were welcome.” (Interview).

Responses to the feedback survey (appendix 1) indicated that Lived Experience Group members had a good understanding of the project, their roles in the team and the support available to them.

Communications

UK standard: Use plain language for well-timed and relevant communications, as part of involvement plans and activities

The Lived Experience Group’s input shaped communications around the project in numerous ways. Within Lived Experience Group Meetings there was much discussion around the language used in data collection tools and promotional material. Lived Experience Group members highlighted how the term “palliative care” may not be well understood by the general public, a view echoed in previous research [15], which could limit recruitment to the survey.

“I was just wondering being part of the general public myself, is it an understanding of what palliative care is and what it entails that makes people hesitant to answer?” (PIRIT)

The group also advocated for the addition of examples of the types of diagnoses that could be included within the survey, to encourage as many people who were eligible to respond, to do so.

“I think the language used in the form is going to be a very, very tricky to get right because I know that my Mum, she had …. cancer. She was very, very ill right from the very start. It was terminal, but she never viewed herself as being terminal. So, if you sent this form out to her, she wouldn't have completed it because she didn't put herself in any of those categories” (PIRIT).

Members of the group made several other suggestions to help people recognise that they would be eligible to take part. For example, agreeing upon and adding a definition of palliative care to the project website and altering the term “life limiting” to “serious life limiting illness” to add clarity for the proposed audience.

“I think when I was reading the WHO definition, the last bit about addressing physical, psychological, social, and spiritual suffering, that very much resonates with myself and what my dad went through. Which makes me lean towards [using the term] life limiting because it's not just life limiting in the physical, its life limiting in the social for him.” (PIRIT).

Their involvement also led to amendments such as offering a range of media to complete the survey including on-line, paper, or large print and signposting to resources to access the survey in other languages (via MS forms).

The Lived Experience Group also influenced the dissemination of the project findings. They advocated for promoting all 24 priorities instead of just the top 10, as is standard practice in most Priority Setting Partnerships. Furthermore, members of the group co-authored the final report and papers and wrote the foreword for the final report.

“Thank you for sharing this amazing report with us all in draft. I actually felt incredibly moved reading it, realising all the collaborative time and effort that it has taken to reach this point.” (PIRIT).

One member of the group was also involved in giving a short presentation of their involvement in the Lived Experience Group at the project launch.

Impact

UK standard: Seek improvement by identifying and sharing the difference that public involvement makes to research

Members of the group reflected on the importance of a feedback loop to reflect on the impact of their involvement.

“The enthusiasm with which all those all that information and the statistics were delivered back to us, by the people who had been working on it…You know, that was really fun to think, OK, yeah, this is great. This is what we've done.” (Interview).

The Lived Experience Group also appreciated how changes made to the surveys based on their input were reported back to them and the discussions about the impact these changes made.

“We've done this bit and then it went out to the world, and you know, this is what they've come back with.” (Interview)

The group also reviewed the final report from the project and made several amendments.

“Thank you for sharing this amazing report with us all in draft. I actually felt incredibly moved reading it, realising all the collaborative time and effort that it has taken to reach this point.” (PIRIT).

The group influenced how information about the impact of the Involvement was captured. Rather than reviewing the PIRIT tracker in each meeting, which the group felt took too long, a short survey was circulated after each Lived Experience Meeting to enable people to share their reflections on the impact of either their own, or the groups contribution to the project.

“It would be really helpful to get this done after every meeting rather than end of the project because the knowledge and information is fresh when you fill it out.”

Governance

UK standard: Involve the public in research management, regulation, leadership and decision making

At the outset of the project, terms of reference and ways of working documents were co-created with both the Lived Experience Group and the Steering Group. Lived Experience Group members were kept up to date with the project’s progress and milestones via regular online meetings and they were consulted on key decisions throughout the project.

The ordering, timing and purpose of each groups’ meetings were carefully considered. Based on feedback from the group, the ordering of the meetings varied, depending on agenda for the meeting, to enable the views of both groups to be heard and considered by the other.

“We need to do a bit of both, don't we? Because if we meet before then we are putting information in. But what comes out as a result of that discussion, we may need to talk about” (PIRIT).

Six Lived Experience Group members joined the project Steering Group, and eight joined the Data Subgroup. Through these channels, members had direct routes to influence decisions made throughout the project.

Support & learning

UK standard: Offer and promote support and learning opportunities that build confidence and skills for public involvement in research

JB was in regular contact with group members, via email and over the phone if necessary. No structured training on was provided, however the research process was discussed in detail in group meetings.

Input from the group shaped the project, including our approach to data analysis. Through this continued dialogue we sought to create transparency and knowledge transfer, which was valued by group members, and the research team alike.

“So, it was an interesting way for me to learn how that research process works at probably the sort of five-star red carpet belt and braces level.” (Interview)

Some members of the Lived Experience Group had both lived and professional experience that was relevant to the project.

"I think because of my experience of research I was able to frame my comments in a way that made them usable for the team"(Survey)

Many others did not have professional experience but were supported to contribute in many ways including piloting different versions of the surveys, shaping the language used in study documents and our approach to data analysis.

Conclusions

Perhaps the most significant impact of the Lived Experience Group was the adaptations made to the language used in promotional information and data collection tools. Discussions within Lived Experience Group meetings highlighted that palliative care, and many terms associated with are often not well understood by non-practitioners. Input from the group enabled clear explanations of who was eligible to take part in the surveys to be formulated, and made the language used throughout more accessible to a lay audience.

The final section of this paper contains key reflections on involvement that other groups embarking on a Priority Setting Partnership may wish to consider, with regards to involvement.

Consider the resource available to support involvement

The project team drew upon an existing full-time role within the lead organisation, which focused on enabling engagement (JB). Thus, existing resource and expertise could be utilised to establish and maintain the Lived Experience Group. In addition to recruiting group members, facilitating meetings and completing impact logs, JB provided support to group members as required. The time needed for this can be hard to predict but should not be underestimated [15, 16].

Define roles clearly

Establishing clearly defined roles and a clear purpose is key to successful involvement [17, 18]. In this project we collectively reviewed the terms and reference and ways of working for both the Lived Experience Group and the project as a whole. Defining these roles and expectations early was well received.

Recognise the importance of consistent relationships

Consistent involvement of the Lived Experience Group was beneficial as it enabled relationships to develop and reciprocal learning to occur. The importance of developing strong rapport between project team members overtime has been identified as a key attribute of successful involvement in palliative care research [15, 16]. Several members of the group have chosen to continue wider involvement with the host organisation which suggests that involvement was percieved as a good use of their time. 

The current project spanned almost two years. The duration of a project is another factor to consider. People may choose to stop their involvement or become less engaged for a variety of reasons including personal circumstances, competing demands, deteriorating health or the sense that a project is no longer relevant or practical for them. Maintaining regular communication helped to maintain engagement of the group.

Support involvement from a diverse group

Lived Experience Group members were able to draw upon existing connections to share the surveys from the project with community groups and organisations and made amendments to the language used to make the project more accessible to a wider audience.

JB held initial calls with each member to explore whether there were any aspects of the project in which members may require additional support. We explored whether adaptations could be made to the project to accommodate different needs and circumstances of group members. Specific training relating to involvement has been recommended in previous guidance, [17, 19] but was not provided in this project. Instead, the current stage of the project and associated methods were discussed and reflected upon in Lived Experience Group meetings. A framework for Equity, Equality, Diversity and Inclusion (EEDI) in PPI for palliative care research has been developed which can inform future work [16].

Incorporate flexibility

Flexibility has been highlighted as important in involvement in palliative care research [15, 20]. Flexibility was incorporated into this project via opportunities for people to be involved in different aspects of the project. We were also able to change the way that we undertook the data analysis, to facilitate involvement from the Lived Experience Group.

Recognise and celebrate the impact of involvement

How to recognise and promote the contribution of public involvement is another important reflection to carry forward into future work [18, 21]. In this project, all Lived Experience Group members were invited to be co-authors on the final report and other publications based on the project. One member wrote the foreword to the final report, and another presented at the launch event. We also endeavoured to celebrate and note the impact of the group throughout the project by highlighting changes made and together reviewing impacts collected through the PIRIT.

Strengths and limitations

This paper has drawn upon different sources of data to reflect on the impact of the first Lived Experience Group within a Priority Setting Partnership. The Lived Experience Group itself was made up of twenty people affected by serious life limiting illness, who largely remained engaged over a project spanning almost two years. We acknowledge that certain groups or types of experience were under-represented within the group. In addition, only a small number of members completed the survey reported in this paper, however we have also drawn on the PIRIT tracker which was maintained throughout the course of the project.

In conclusion, the Lived Experience Group made sustained and impactful changes to many elements of the project. We are grateful and inspired by the passion, commitment, and generosity of the group in sharing their time and experiences to shape the project.

Authors' contributions

BH, JB and JC compiled and collected data used in this project and collaborated on data analysis. JB, JC, and BH led on writing the manuscript. All authors (AD, RK, AR, DR, SB) were involved in the project upon which these reflections are based and have read and approved the manuscript.

Funding

The Priority Setting Partnership to which the Lived Experience Group described in this paper relates was funded by Marie Curie, with co-funding from The Motor Neurone Disease Association and the Economic and Social Research Council as part of UK Research and Innovation.

Data availability

No datasets were generated or analysed during the current study.

Declarations

Ethics approval and consent to participate

Ethical approval for the project was received from the University College London research ethics committee (ref; 6202/010).

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.