Communities of Practice as a Method for Public Involvement in Data Intensive Health Research

Patient and Public Involvement and Engagement (PPIE) is research “carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them” (NIHR 2021). PPIE is based on the principle that people who are affected by the processes or outcomes of research have a fundamental right to have a say in what, and how, research is undertaken (Staley, 2009). In a UK context, this is especially pertinent in health and social care research where the benefits of PPIE are becoming increasingly recognised. There is a growing emphasis on involving public and patient members with lived experience of a specific disability, health condition or situation (e.g., individuals with caring responsibilities) across all stages of the research cycle (Brett et al., 2014; Mockford et al., 2012; Staley, 2009), including in the planning, conduct, and dissemination stages, to ensure that projects and outputs are aligned with the needs of the communities and individuals affected (Frith 2023; NIHR 2015; NIHR 2019).

Nearly 15 percent of people in England are living with multiple-long term conditions (MLTCs) which refers to the co-existence of two or more chronic conditions (physical or mental) in a person (Valabhji et al., 2024). It is estimated that people with MLTC account for more than half of the NHS primary and secondary care costs and, as prevalence rates are growing in line with our ageing population, increasing focus and funding is being allocated to MLTC research (NIHR 2024). It is crucial that individuals living with MLTCs are involved in the design and conduct of research in this area as they can offer first-hand experience and unique insights into the daily management of complex health challenges. To understand specific issues related to PPIE and MLTCs, the Applied Research Collaboration (ARC) East Midlands held a workshop with researchers, patients and carers as part of a national priority research event. Regarding MLTCs, key issues related to the broad spectrum of lived experience (e.g., wide age range, differing lengths of lived experience and experience of many different treatments), commonalities in experiences across conditions (e.g., appointment overload, pain, fragmented care), the importance of not overlooking the lived experience of caregivers and workers and the recognition that ‘MLTCs’ means little to the general public. PPIE challenges included a lack of diversity and the need to develop infrastructure to engage with existing networks, a reliance on virtual engagement which can automatically exclude people, resource and time barriers meaning that carers struggle to engage with researchers, and that most research and PPIE groups are focused on single conditions (NIHR ARC East Midlands, 2024).

One potential strategy to foster collaboration in the PPIE and MLTC research space is through the creation of a ‘Community of Practice’ (CoP). A CoP is a group of people who share a concern, set of problems, or a passion for a particular topic, and who enhance their knowledge and expertise by engaging with one another on an ongoing basis (NHS England, 2024). A CoP is about creating a ‘doing and learning environment’ for a network of individuals with common problems or interests who get together to explore ways of working, identify common solutions, share good practice and ideas, and learn from one another. Previously, the implementation and efficacy of CoPs in health research and translation has been explored (James-McAlpine et al., 2023). The findings of the scoping review demonstrated a paucity of evidence on the topic, and authors called for future empirical research to determine if CoPs can enhance the translation of research into clinical practice. In the context of public health, some work has been completed to develop a conceptual model to evaluate a professional development intervention (Health Promotion Laboratories) based on a CoP strategy in Canada, and in the UK, as an example, the National Institute for Health and Care Research (NIHR) ARC Kent, Surrey and Sussex have created a series of CoPs for researchers working on a range of research themes, such as learning disabilities, social care and digital innovation (NIHR ARC Kent, Surrey and Sussex, 2020).

To our knowledge, a CoP has not been previously explored as a means to share expertise and learnings around PPIE across a range of stakeholders. As such, the aim of this paper is to introduce our CoP as a PPIE method in the MLTC research space, showcase the impact of the CoP on the research conducted by community members, and share the experiences and learnings from both Early Career Researchers (ECRs) and PPIE members (including carers) involved in CoP projects.

Methods

What is our community of practice?

In July 2022, lead author xx was awarded funding in response to a Strategic Priorities Fund MLTC Community of Practice call by the Medical Research Council, to deliver a project entitled 'MLTC-M Community of Practice in early career researcher (ECR) training on best practice patient and public involvement with diverse populations’. This project aimed to train ECRs to build confidence in their PPIE-related work in MLTC research, including the recruitment of individuals from diverse backgrounds. As part of the funding application process, letters of support were received from nine UK-wide MLTC-focused consortia. These were ADMISSION (Newcastle Biomedical Research Centre), AIM-CISC (University of Edinburgh), GEMINI (University of Exeter), DECODE (Loughborough University), DEMISTIFI (Imperial College London), AI-MULTIPLY (Newcastle University & Queen Mary University London), AIM (University of Southampton), LINC (University of Bristol) and MMTRC (University College London). All collaboratives were dedicated to identifying ECRs, PPIE contributors and PPIE leads to join the CoP. Additional members have since joined the CoP through word of mouth, various communication channels, and event engagements.

Separately, the National Institute for Health and Care Research established the Artificial Intelligence for Multiple Long-Term Conditions (AIM) programme which would support research that combines data science and AI methods with health, care, and social science expertise to identify new clusters of disease and understand how multiple long-term conditions develop over the life course. In addition to 8 research projects, the “AI for Multiple Long-Term Condition Research Support Facility” (AIM RSF; https://www.turing.ac.uk/research/research-projects/ai-for-multiple-long-term-conditions-research-support-facility) was established as a partnership between The Alan Turing Institute, Swansea University and Edinburgh University with the goal of ensuring effective knowledge sharing across the research collaboratives and embed best practices in data security and standards, reproducibility, and PPIE across the research supported by the AIM programme. The AIM RSF had begun to establish a community of patients, research infrastructure staff, and people with lived experience for mutual learning and to support the implementation of effective and impactful PPIE so that the conducted research would best improve patient care and further the social and scientific understanding of MLTCs.

In December 2022, the initial CoP and AIM RSF teams met to establish a cross-partnership collaboration. Given the ambitions of both projects and to make most efficient use of resources, both comparatively new communities merged under a “PPIE for MLTC CoP” label to support a wider variety of projects and collaborators in embedding diverse voices in PPIE for MLTC research. At the outset of the merged collaboration, the concept of a ‘community of practice’ was explained to all members, emphasising the shared focus around MLTC research and the aim of promoting knowledge sharing through active participation. The new community engaged in co-creation sessions to identify shared aims and ensure that the combined initiative reflected the needs and goals of all contributors and community members. Through these sessions the community centred its focus on three key areas: (1) develop a shared and implementable understanding of how to ensure that members of the public involved in PPIE are actively embedded through the research process and are able to impact the direction of AIM research and its outcomes; (2) support ECRs new to PPIE in upholding ethical, inclusive, and accessible research practices throughout the research process by facilitating training sessions, “pre-research” collaboration and cross-community knowledge sharing; and (3) establish guidance on how to implement PPIE in ways that enable research to address patient care, tackle health inequalities, and improve the community’s collective understanding of Multiple Long-Term Conditions.

As of October 2024, our community members are constituents of 27 different research projects, geographically distributed across the United Kingdom. Beyond bringing together a variety of projects, our community also represents a diverse set of stakeholders amongst the 150 community members: 41% of community members are researchers (majority ECRs) and 38% of community members are PPIE contributors (either patients with MLTCs or members of the public with other connections to MLTCs, including carers). The remaining 21% is split between PPIE support staff, NHS team members, and third-sector organisations such as PPIE charities, and patient organisations, many of whom fulfil a research service role and may support multiple different PPIE projects at any given time.

CoP activities

To reach the community’s goals, the CoP organised itself in a variety of formats and through different activities. Given the geographic scope of these, many of these interactions were facilitated online.

Monthly virtual meetups

At the heart of the CoP interactions are monthly-recurring CoP meetings. These 1 ½ hour lunchtime meetings are hosted virtually on Zoom and take place on the first Wednesday of each month. These monthly meetups do not follow a fixed format each month and instead adapt to both the content of a given meetup and the community preferences over time. Different formats and approaches we have used are:

1. Open-ended discussions around certain topics. This includes both specific topics brought by community members (e.g. “How do you think about fairness in healthcare?”) or self-referential for planning future community activities (“Which topics should we discuss going forward?”, “What is the CoP doing well or what could we do better?”)

2. Brief (~20 min) talks by invited speakers on topics suggested by the CoP, followed by a discussion on how different CoP members work on given topics. An example of this would be a presentation on accessibility & inclusion and how each project can make their own PPIE more inclusive.

3. Longer (~1 hour) lectures by invited speakers, with the goal of learning on a given, CoP-picked topic (e.g. “What is AI?”). In these cases, the remaining time was used for interactive questions & answers.

To announce the monthly meetups, the community facilitators send out a monthly newsletter, alongside an electronic calendar invite for participants. Additionally, an email reminder is sent in the week of the meetup. Between January 2023 and October 2024, the attendance has fluctuated, with calls attracting between 20 and 100 community members.

Workshops

In addition to our regular CoP meetup sessions, we also organised a number of workshops on topics such as effective science communication and recruiting and facilitating diverse PPIE. The topics of these workshops were informed by CoP input at monthly meetups and then scheduled by the CoP facilitators, who would identify and invite external facilitators with expertise in the selected topic area. These online workshops brought together all CoP stakeholders, including ECRs & PPIE contributors.

Knowledge share sessions

Our CoP also facilitated knowledge share sessions where ECRs could engage directly with patients, carers and public contributors to seek early feedback on project ideas and explore the lived experiences of PPIE members to better inform their research design and processes. The focus was on the early development of projects that incorporated PPIE contributions, supporting ECRs in grant applications and the design of research that actively addressed the needs of patient populations most affected by the research outcomes. Simultaneously, PPIE members were empowered to shape the research by contributing their unique perspectives.

Asynchronous digital communication

Beyond meeting up online via Zoom, our CoP also uses asynchronous text media for communication. Beyond a traditional email list of participants, we used Slack as a text messaging/chat solution to organise some of the workshops, events and planned out future meetings. Whilst unexpected challenges may have arisen, we have successfully used Slack in previous projects, including those with public contributors. We also implemented an onboarding process and created a step-by-step guide for those new to the platform.

Impact of involvement

We captured the impact of involvement in the CoP through various means. One approach was sending ‘impact postcards’ via email to all members, asking them to complete two statements: 1) ‘Something I have learnt or gained from being part of the community is…’, 2) Something I have changed or put into practice as a result of being part of this community is…'. Additionally, we gathered feedback following workshops and knowledge-sharing sessions, both through written responses shared via email and Slack and spoken feedback during subsequent monthly meetups.

Impact of the Community of Practice

To provide a broad overview of the diverse types of impacts that our community of practice delivered, we will highlight some of the different types of community engagement alongside their outcomes as small vignettes or case studies.

Impact of monthly virtual meetups

Between January 2023 and October 2024, we facilitated a total of 18 open-ended community meetings, all of which took place online through Zoom. On average, 20-40 community members attended those meetings (min: 12 max: 85). In these meetups, we observed the benefits of being a “blended community” across both different research projects but also types of interest-holders. By bringing together patients, carers, PPIE professionals and researchers from a wide range of MLTC-related research projects, our CoP assembled a diverse group of participants, allowing for deep knowledge sharing in a safe environment. The diversity of the community was appreciated by both PPIE contributors (“I have thoroughly enjoyed being part, but I am a patient voice rather than an early career researcher. So, I see my role as more to reassure early career researchers that we are not scary and can help them do things better”) as well as researchers, who mentioned the ability to listen to what really matters to patient voices and to receive feedback on project plans.

Adjusted CoP communication practices

Feedback from CoP members resulted in changes to our communication strategies. One example related to the organisation of our virtual meetups. During one of our CoP meetings, it became evident that there was a broad range of preferred ways of receiving the invites and reminders for our meetings. While some community members preferred to receive invites by email, with reminder emails sent a few days in advance, others heavily relied on their electronic calendars and thus receiving automated calendar invites was preferred. Insights from these discussions allowed us to adapt our own CoP invite practices, by combining event reminders via email alongside the automated reminders through electronic calendar invites. This small adjustment helped to improve our inclusivity practices and accessibility for CoP members. As a result of these changes, PPIE professionals made similar changes to their own invite practices, as well as, for example, setting up social media groups (e.g., WhatsApp) as another means to share meeting invites and project information.

Throughout the CoP sessions, our community collectively also shared their own experiences, best practices and challenges around running virtual and in-person events, with a particular focus on accessibility for participants with lived experience, ensuring meaningful involvement in the face of potential power imbalances. Experiences and approaches were aggregated from the experiences of our community members and distilled into a chapter on Hosting Events with Members of the Public for the The Turing Way (TTW) online handbook on best practices for data-driven research (The Turing Way Community, 2024). As an open-source project, TTW is written and maintained by a wider community, providing a pathway for the learnings of our CoP to reach a broader audience. Our book chapter was spearheaded by one of our community members, who regularly shared writing progress with the CoP, collecting feedback and reviews to iterate on the chapter.

Training for ECRs & PPIE contributors

To align with our objective to train ECRs to build confidence in PPIE-related work in MLTC research, we provided a series of training opportunities that were aimed at both ECRs and PPIE contributors.

At the outset of the CoP, on 22nd November 2022, we hosted a workshop entitled “Involving People with Multiple Long-Term Health Conditions” which was delivered by an external facilitator. This workshop was attended by 32 participants (17 ECRs, 6 PPIE contributors and 9 PPIE project leads). The workshop aimed to inspire participants to engage in PPIE activities and provide them with practical tools to facilitate and/or enhance involvement of patients and the public in individual research projects. The workshop covered a variety of themes, including defining key PPIE terms, sharing experiences from different research domains (e.g., clinical trials, big data, and qualitative research), and addressing barriers to successful involvement. This initial workshop created a strong foundation for PPIE involvement within the CoP and set the tone for an atmosphere of openness and collaboration between researchers and PPIE contributors in future CoP activities. Participants reported that sessions on “Talking about your research in plain English” and “Taking forward involvement in your project” were instrumental in improving their ability to communicate complex research in an accessible way.

In May 2023, we organised a workshop focused on methods of PPIE evaluation, co-led by external facilitators from NIHR Applied Research Collaboration (ARC) West, a research collaborative focused on applied health research that addresses immediate concerns within the health and social care system. This workshop introduced participants to various methods for planning and evaluating the impact of PPIE activities. This session provided a structured approach to evaluating public engagement, and attendees learned how to apply evaluation tools to measure both short-term and long-term impacts of PPIE on research outcomes. The workshop enhanced participants’ ability to design more reflective and iterative PPIE practices, improving both the transparency and the inclusivity of their projects.

In October 2023, we held a first workshop on public engagement. This workshop was given by an external facilitator, to provide a broader perspective on how one can think about public engagement in research and key considerations for making projects more inclusive for PPIE contributors. This workshop was attended by ECRs and PPIE contributors and included discussions on how to create meaningful interactions between researchers and public contributors.

In November 2023, the CoP supported a reverse focus group co-hosted with a charity working with women experiencing multiple disadvantages during pregnancy and early motherhood. The aim of a reverse focus group session is to “reverse” the traditional dynamic between researchers and participants where, instead of researchers being perceived as the experts in the room, the members of the public are the experts. The session was focused on understanding the barriers to research involvement faced by women experiencing inequalities and disadvantages, and to co-create a list of recommendations to better facilitate involvement in maternity research. Five ECRs participated in this session alongside members of the charity’s Lived Experience Team and staff. This format allowed the researchers to listen directly to the experiences of these women, providing invaluable insights into how best to engage underserved communities in PPIE and healthcare research.

In December 2023, two public contributors and a member of a Young People’s Advisory Group (YPAG) delivered a session on how to work effectively with public contributors. They shared a co-created guidance document aimed at supporting researchers to develop stronger relationships with PPIE contributors. The workshop facilitators shared valuable insights and tips on how to involve children and young people in research. More broadly, this workshop was particularly successful in equipping researchers with practical advice for engaging underrepresented groups in research. Attendees reported that the guidance document provided a clear, actionable framework for ensuring that PPIE contributors feel valued and empowered to shape the research process. The session also helped to highlight the importance of tailoring engagement approaches to meet the specific needs of different contributor groups.

Similarly, in February 2024, we organised a workshop on how to recruit for and run PPIE activities for diverse groups such as with contributors that are from historically underrepresented or marginalised communities. As external facilitators, we invited a health inequalities charity, to facilitate a session on ensuring diverse representation in research projects involving PPIE. Attended by 37 participants (10 ECRs, 12 PPIE Contributors, and 15 PPIE project leads and staff), the workshop covered practical strategies for researchers to ensure that PPIE activities are not only inclusive, but also genuinely reflective of the needs and concerns of patients and communities that are typically excluded from health research. The facilitators emphasised the importance for researchers to engage with local organisations and charities to build trust within communities and better understand how to tailor outreach efforts for contributors who are historically underrepresented in health data sets and data intensive health care research. The workshop helped both ECRs and PPIE community members recognise the critical role that diverse perspectives play in shaping AI and data science project outputs. Further, it highlighted the importance of involving a diverse range of PPIE contributors to ensure that research reflects the lived experiences of different communities, and it directly benefits all those it intends to serve.

Our final funded activity was a Research Engagement Event held in September 2024 with the same charity who hosted the February 2024 workshop. The purpose of the event was to afford 7 ECRs the opportunity to present their research, with the assistance of a lay language poster, to local community members for feedback. Recruitment of community members was facilitated by the charity team, ensuring a diverse mix of individuals, including those who required English language interpretation support. A World Café style format was adopted whereby 5-6 community members were grouped together with a table ‘host’ (charity worker or interpreter) and ECRs were directed to four of the seven tables at 20-minute intervals, ensuring those individuals were well placed to input into individual project topics and questions. One community member reported that “it was a lot better than zoom, it was brilliant. I’m impressed with how natural it was. It was nice that everyone felt comfortable” whilst a facilitator commented, “participants want more information on research. They would like research to be in community centres.” One of our ECRs also shared positive thoughts as they said, “it was a hugely valuable and productive opportunity to share with people and hear their thoughts on my research.”

In addition to externally facilitated workshops, our CoP members also hosted a number of sessions focused on topics that were previously identified as being of interest to our contributors. This included talks on alternative forms of public engagement (e.g., co-created citizen science), the role of AI in “data” and the use and creation of synthetic data to investigate MLTC. These community-hosted sessions served two purposes. Firstly, to actively support the training and knowledge-building of CoP members, and secondly, to offer applied, hands-on learning opportunities for presenters to gain first-hand experience of presenting to a diverse audience, including public contributors.

Project development and supporting related activities

Beyond organising its own events and workshops, our CoP also provided feedback on new project ideas and other related dissemination activities.

One example is the development of a survey focused on understanding potential barriers to fairness on the use of AI in healthcare to address MLTCs. Starting out with initial brainstorming between researchers that are regular attendees of CoP meetings, the research team used both the regular CoP community meetings to present their ideas, as well as for recruiting for more formal focus group sessions, in which they obtained community feedback to align the survey both with the needs and recommendations of PPIE contributors. The research team are currently in the process of collecting survey responses from a range of patients with MLTC, whilst following the diverse recruitment principles outlined in previous CoP workshops.

Four ECRs from projects affiliated with the CoP sought feedback on their early-stage research ideas during knowledge share sessions. PPIE members provided valuable insights into the relevance and feasibility of the proposed research questions and methodologies and discussed the potential for wider impact in improving healthcare for individuals with MLTC. All four research proposals were successfully funded, demonstrating the effectiveness of the CoP in enhancing PPIE engagement in both current and future projects. Additionally, PPIE CoP members contributed to the development phase of externally led projects, such as one focused on AI-based early prediction of dementia, further extending the impact of the CoP.

Finally, our CoP played an essential role in supporting the organisers of the 2024 AIM conference ensuring that the needs of PPIE contributors were integrated into the planning process and delivery of the conference. Building on the general recommendations outlined in the TTW chapter (see above), the conference organisers became regular attendees at the monthly CoP sessions, where they shared updates and sought informal feedback.

Discussion

Here, we have presented our work at organising a participatory community of practice (CoP) around the topic of doing patient and public involvement and engagement (PPIE) around the topic of multiple long-term conditions (MLTC). Over the past two years, our community has grown to include 150 people, representing 27 different projects across the UK. Jointly, this CoP not only brought together different research projects, but also patients, carers, ECRs, clinicians and PPIE staff. Following our experiences, we aim to discuss some of the benefits as well as some of the challenges that we encountered as part of our community facilitation, with the goal to support other practitioners who consider setting up a similar CoP for their own domain.

We found that our community members reported the CoP as having a positive impact on their PPIE engagements in their respective projects. Multiple ECRs as well as PPIE facilitators reported the monthly community meetings as a useful “space to discuss which bits of PPIE are hard and brainstorming solutions.” Similarly, community members acknowledged that the peer-support and training fit the needs for newcomers to PPIE (“I don’t know how I’d have navigated my job without this group”). ECRs highlighted the broader benefits of the CoP in enhancing their knowledge and communication skills with PPIE contributors, e.g. “I came to [project name] halfway through so I had experience with the PPIE world but never in the world of MLTC nor in the world of artificial intelligence or digital tools. It was extremely helpful to build on my own personal knowledge and also to learn about how to communicate about complicated topics.” Another ECR shared their experiences of engaging with the CoP: “I was able to learn more about evaluation and impact in PPIE through the really informative and engaging session held by the CoP on this topic. I was able to share my PhD project idea and gain feedback from the public contributors and researchers which shaped and informed my fellowship proposal and application. I was successful in my application and really value the support and involvement of the CoP.”

PPIE leads also shared details on the ways in which the CoP impacted PPIE strategies and engagement in individual projects. One PPIE lead described learning about and embedding “the ‘3-tiered’ approach of having experienced service users as co-apps plus recent service users as an advisory group, complemented by ‘deep dives’ to consult on specific PPI questions”. They also spoke about being “encouraged by the CoP to think about how we communicate about the special challenges of multimorbidity and the importance of research” and stated that they were “in the process of producing a video about this aimed at policymakers and other external audiences.” One other PPIE lead fed back on how the CoP assisted in raising awareness of the complexity of financial incentives for carers of people living with disabilities: “We had already considered that receiving research payments may affect the benefits of people with learning disabilities but hadn’t thought of the impact on carers who might receive carers allowance for example. I think carers talking about such issues in the COP helped us to be more aware of this.”

Our contributors saw particular value in the “blended” nature of a community that was not exclusively consisting of ECRs, PPIE contributors or professional facilitators but rather combined these different groups and perspectives. This diversity provided a way for community members to expand their own understanding of MLTCs and PPIE, beyond their professional network and individual research projects. For example, PPIE facilitators reported learning about the “differing impacts of MLTCs at various life stages” and getting a sense of shared concerns, in which different people experience similar challenges in their PPIE-engaged research, and how to learn from each other. Overall, this blended approach led to building a network of trust between the diverse set of community members, with participants noting how the group “has become supportive online friends”, in which “listening to other people makes you feel better”.

While we acknowledge that mostly online facilitated communities undergo a self-selected recruitment – that can lead to overly positive views (Ciffolilli, 2003)– we would like to encourage others who are planning to start a CoP to think about if it could be beneficial to grow their community beyond a narrow set of groups and how this could be achieved. In our case, while our community was initially focused on ECRs and PPIE staff, the community had a much broader positive impact once we widened our interest-holder groups. Depending on your CoP’s context, different target groups might be useful to support a deeper and more meaningful experience for all community members.

The broad, diverse nature of the community did create a few challenges, though. The first challenge we encountered was maintaining some balance between the different groups. One community member shared, “There is always going to be a tension between the needs of patients and carers (i.e. non researchers) and researchers. It does not mean we want different things, but the language might be different: the concepts not familiar”, whilst another commented on the role of PPIE contributors in improving the language used in community sessions: “At the beginning, CoP sessions were too technical (academic) and focussing too much on what the individual team were doing. The topic of discussions was not too useful or helpful to other CoP teams and understanding outcome or impact of their work was also not easy. With the help of public attendees and their guidance, language used by the CoP teams was much simplified for lay audience and more effort was made to share learning on methodologies and outcomes.”

We also quickly discovered that certain groups were more likely to attend community events than others. To counterbalance this, we engaged with our community members to understand potential limitations. For our CoP, we identified a number of barriers that led to the wide range in attendance numbers and a skew in participants at our events (online and offline), which may have been due to a lack of protected time to attend for different participants (e.g. PPIE contributors who volunteer their time to research efforts and ECRs for whom PPIE is often not considered part of their key responsibilities). To at least ameliorate those challenges, we decided to organise our monthly community meetings over a lunch-time slot, as those are easier to fit into the schedules of people who might have conflicting responsibilities. Similarly, we adjusted our community meetups to have invites with clear agendas beforehand, instead of keeping meetings more open-ended. As a result, community members were given more information about what to expect and could prioritise their schedules accordingly. Community members fed back that, once meeting logistics had been amended, these lunchtime sessions served as a useful platform “to hear comments from different groups of people as a blended contribution. This helped to bring the conversation on and enable a better understanding of the topic being discussed.” One PPIE facilitator also shared that “this community was really great for including the voices of public contributors. The meetings were useful to hear those points of view. It was fundamental, it was better to host it this way, it wouldn’t have been a community like it has been.”

Despite our best efforts at planning for and running the online events, the challenge of digital exclusion remained. Across the different contributor groups, not all participants feel equally comfortable or able to participate in digital meetings that are held in synchronous video calls or asynchronously via email and text messaging. At the same time, the distributed nature that does not require travel can be particularly useful for patient contributors that can face larger barriers due to ill health and potential health risks (Heyen et al., 2022). For online meetings, it is particularly important that facilitators establish an environment where everyone, especially public contributors, feel comfortable and supported in contributing to discussions. One CoP member reported that our facilitators were “brilliant at engaging with people, particularly members of the public and giving them time to talk and reinforcing that their views were important”, whilst another thought that the CoP “had clear leadership and named contacts that lay members could reach out to individually for support joining the calls or to provide feedback individually on a specific topic, which hopefully helped to mitigate the barriers that individuals faced in terms of contributing in a group.” Further, utilising a communication platform (e.g., Slack) provides an alternative way for people to stay connected with the CoP, offering text-message style exchanges that may be more suitable for some than email communication. Nevertheless, both in-person and virtual events present their own challenges, so trade-offs must be considered, and barriers to participation should be identified, with efforts made to minimise these in both formats. Regarding the mix of virtual and in-person events, one CoP member fed back that “it’s really convenient being online as it’s just about fitting it into your diary. The conference events were helpful to meet people in person. I think the balance was about right.” Regarding the setup and delivery of future CoPs, one of our public contributors recommended, “planning and sharing of information for at least 1 or 2 in-person full day sessions where at least 2/4 reps from each teams / stakeholder groups should (or could) attend to share ideas.”

We also worked as community facilitators to ensure that the topics of our community sessions were tailored to the needs and interests of the group as a whole and that a balance of interests was maintained. For us, this meant identifying topics that were of interest to all community sub-groups, whilst also ensuring that workshops, presentations and other less discussion-based events were accessible and of interest for the CoP as a whole. This requirement for community input could at times present its own challenge. Depending on the question or topic, it was not always easy to receive input from the members of the CoP. One PPIE lead shared that, “this may be due to the lack of experience of the group members on the topic and the fact that PPI has some inherent challenges in the field that people continue to struggle with, such as diversity or involving new people.” This led to a two-fold learning process amongst the facilitators. On the one hand, we improved on the way we framed and presented options to the community, moving from more open-ended requests for input to more concrete questions. On the other hand, the facilitators also became more skilled in interpreting the often-broad suggestions and wishes for future topics, based on being more familiar with the community and its members and the trust built with CoP members over time. Despite this challenge, feedback from CoP members was extremely positive. One PPIE contributor described attending two sessions where “there was an expert who did a presentation at each of them. It really helped because they were talking at our level, whereas sometimes in [place], they talk about data in a language that we don’t understand. It was excellent in the way it was explained to us so we could go back to our projects and take a more active role.” Despite this, funding remained an issue. In our CoP, individual projects were required to fund PPIE contributors to attend monthly lunchtime meetups and the dedicated CoP funding was utilised for workshops and knowledge sharing sessions. However, one PPIE contributor highlighted that "it became a burden for non-academic team members to attend [monthly meetups] because of financial burden on individual team’s budget", and they recommended that “future CoP programme should receive dedicated budget to support these activities which will allow for the logistical support and dedicated resource.”

This level of facilitation also brings us to the last challenge in sustaining a CoP like ours. The amount of effort required for the facilitation (hosting a call, planning out future meetings, inviting speakers, sending around invites and notes), is hard to sustain without dedicated funding for a full-time or at least part-time facilitators. For our CoP, we initially employed a part-time “research coordinator”, and later on a full-time “research community manager” as a more novel research infrastructure role (Sharan et al., 2024). Funding for sustaining such activities over longer periods of time is rare though. In our specific case, most PPIE efforts are funded as part of individual research projects, which by their nature are time-limited, which means that it can be hard to maintain long-term continuity.

For our CoP, we already successfully managed to elongate our CoP’s lifespan by growing and joining two distinct communities, as the original CoP was planned to end in April 2024, but thanks to the support of the AIM RSF, this could be expanded to at least October 2024. Despite this, other than a few early conversations, we must acknowledge that, currently, our CoP has no clear sustainability plans beyond that date. Since May 2024, in community meetings, we have started to brainstorm how we may continue or wind down efforts as the whole community. So far, our community has not agreed on a clear way forward, with some people preferring winding it down as other research projects would, while others are in favour of expanding it if possible, with fewer resources. While we are still navigating this uncertainty, it is clear that the CoP has evolved into a supportive and friendly space, and the potential emotional impact of its complete dissolution could be significant. We encourage people planning a CoP to think early about if and how to sustain or close down the CoP when the time might come. Importantly, we would also encourage facilitators to engage with the community itself to find a satisfactory solution for all members.

We conclude that forming inclusive and diverse CoPs can be a powerful way of providing safe spaces for mutual learning and growth. We are confident that our CoP approach would be a fit both for PPIE engagements in disciplines outside of MLTCs, but also in other public engagement settings that want to (or have to) engage a diverse set of groups.

Funding

This work was also funded by the NIHR AIM Research Support Facility (NIHR202647) and the Medical Research Council (MR/X004341/1). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

Acknowledgements

We thank the whole community contributors that supported our work and the community of practice over its lifespan. We thank Batool Almarzouq and Sydney Ambrose of the AIM Research Support Facility for their support in preparing our community meetings.