Involving experts by experience in adult social care research capacity building: impact and reflections

Research capacity in adult social care

Adult social care (ASC) covers a wide range of services in people’s own homes, day centres or care/nursing homes (The Kings Fund, 2025). Its aim is to help adults living with disability, frailty, physical and/or mental illness, and other challenges to stay as well, safe and independent as possible (The Kings Fund, 2025). ASC is fragmented, with services delivered by statutory, private and charity sectors (Bayliss & Gideon, 2020; Chaney, 2022; Hudson, 2021), along with complex funding arrangements that people supported by services have to navigate (Thorlby et al., 2018). How social care is delivered and who is eligible for support also depends on complex influences, including legislation, market forces and changing demographics (Glasby et al., 2021). Compared to healthcare, social care practice in England is also considerably less research-informed; most new ASC programmes are not evidence-based (Mullen & Bacon, 2004; Steventon et al., 2012). There is both a notable gap between research and practice in how ASC is delivered (MacIntyre & Paul, 2013; Marshall et al., 2016), and an increasing deficit in research capacity across the ASC workforce (MacIntyre & Paul, 2013; Morago, 2010).

To support evidence-informed ASC practice, there has been a growing demand to build research capacity in ASC through ‘real partnerships between the research community and local authorities (and other stakeholders)’ (Cyhlarova & Clark, 2019, p.1). We followed the Cooke (2005) framework for research capacity building, which defines it as developing research skills and confidence, ensuring research is ‘close to practice’, supports linkages and partnerships, develops appropriate dissemination, builds sustainability and continuity, and invests in infrastructure (for further detail, see Abrahamson et al., 2025; Zhang et al., 2026). To achieve any of the above, building links between the social care workforce, with their practice knowledge and skills, and researchers who generate robust and relevant research findings is insufficient; involving people with lived experience of accessing services, as well as their families/carers, is equally important (Holmes et al., 2021).

Historically, people with lived experience were only invited to act as research participants rather than playing an active role in the design, development and management of research (Higgins & Lenette, 2024). Recent decades, however, have welcomed the recognition of the importance and necessity of service-user voices in all aspects of research from design to delivery. This fundamental shift in thinking and practice was driven by various rights-based movements such as the disability movement and recovery movement (see Morrow et al., 2011), which challenged the pervasive rhetoric around the passivity of research ‘subjects’, positioning the researcher as all-powerful and all-knowing. It is not difficult to recognise and understand that we all have a right to be involved in issues that affect us – whether directly or indirectly – and research is no different. The disability rights slogan ‘nothing about us without us’ captures this perfectly (Charlton, 2011).

The UK-based National Institute for Health and Care Research (NIHR) is committed to capturing and embedding lived experience to improve research – also known as Patient and Public Involvement (PPI) (NIHR, 2024). Not only is PPI a prerequisite for NIHR funding but it can also enhance research quality, relevance, accessibility and impact (Angell et al., 2003). The term ‘experts by experience’ in research highlights the move away from previous paternalistic approaches and instead recognises the expertise and knowledge of people with lived experience (Fox, 2016). However, including those with lived experience does not automatically mean equal power-sharing within a project, as discussed later in the paper.

This paper describes how a public-led Expert by Experience (EbyE) working group has supported an ASC research capacity-building initiative called the Kent Research Partnership (KRP). The paper discusses the nature of group activities and their model of involvement, as well as evidencing the group’s impact on the partnership overall. We present three evaluation approaches used to date, and comment on the merits of multi-method iterative evaluation.

The Kent Research Partnership

KRP is one of six ASC partnerships in England funded by the NIHR. Over the four-year programme of work, the partnership aims to build ASC research capacity (NIHR, 2021). The partnership started in June 2021 and is led by the University of Kent and Kent County Council, with collaborators from the University of Brighton, Kent Integrated Care Alliance, The Home Care Association and the National Care Forum. The partnership is additionally supported by the NIHR Applied Research Collaboration Kent, Surrey and Sussex, and the NIHR Clinical Research Network Kent, Surrey and Sussex. The partnership has four interlinked streams of work: (1) hosting communities of practice, that bring a range of stakeholders together in ASC and aim to generate and share knowledge on evidence-based practice; (2) employing researchers-in-residence to support the development and sustainability of a research culture in the ASC sector, research and training fellowships; (3) funding members of Kent’s ASC workforce to undertake pilot research projects in regional ASC priority areas; and (4) sharing knowledge and creating impact by providing audience-tailored access to research. All KRP activities are supported by a working group of members of the public with lived experience of ASC (for further detail, see Abrahamson et al., 2025; Hashem et al., 2024; Smith et al., 2026; Zhang et al., 2026).

Expert by Experience working group

A public involvement and engagement working group (henceforth EbyE working group) first met in July 2021 and its purpose was to ensure that EbyE informed every aspect of the partnership. The group was established and is co-led by a public member project co-applicant (JP) and a Digital and Innovation Lead (GW) for Adult Social Care and Health at the Kent County Council (KCC). The group consists of 12 experts by experience, who meet every two months to review existing partnership activities and seek areas of change and improvement.

Group members were recruited through JP’s and GW’s existing contacts, the People’s Panel – a joint initiative between KCC and Healthwatch Kent to bring a range of ideas in discussions about social care service delivery (Healthwatch Kent, 2019) – and at online networking events organised by KRP. The group originally had nine members, with two people subsequently leaving (both citing time/work pressures as the reason) and five new members joining later. All members, past and current, have experience of receiving social care support or caring for a family member/friend who does (Figure 1 shows the experience and expertise areas of the current working-group members).

Figure 1.

Working group member profiles, areas of interest and wider links (each box represents a different Expert by Experience; names have been redacted)

Working group activities

Upon formation, the EbyE working group identified the need for specific co-production training. Using an external agency with previous experience of working with KCC, working group co-leads, along with significant input from the group members, developed course objectives. This training, split across four sessions with a mix of virtual and face-to-face delivery modes, was well-received by the group and identified as a source of motivation. This training was distinct from broader research capacity-building initiatives aimed at the adult social care workforce. It was a tailored, EbyE-specific component that then enabled EbyEs to play an active role in workforce-capacity building, for example by contributing to the training design and presenting at Community of Practice meetings.

Group members engaged in all streams of KRP work. Box 1 outlines some examples.

Part of the group activities involved both informing and participating in the evaluation of EbyE impact.

EbyE working group impact

Impact on the partnership and its overarching objective to build research capacity in ASC was measured iteratively in a variety of ways, including: an impact log; biannual surveys; and an NIHR-sponsored ‘Cube’ evaluation on the quality of public involvement and partnership working. These approaches are described in detail in the following sections. Separate analyses were conducted for each evaluation method, informed by an explicit commitment to methodological triangulation and the recognition that no individual approach offered a way to capture impact in a comprehensive way (Vivek et al., 2023). Integration focused primarily on complementarity across methods, aiming to enrich our understanding of the working group impact by applying different lenses, rather than simply ‘cross-checking’ whether different methods provided the same results (Moran-Elllis et al., 2006).

Ethical permission for the evaluation of KRP, including its EbyE working group, was granted by the University of Kent Staff Review Committee (Application: 0708). During the reported period, the impact log was compiled by researchers in residence and did not carry individual EbyE details; we periodically checked with the working group that the impact log entries were correct and comprehensive. Both the biannual survey and the Cube evaluation were completed anonymously and were optional activities, to enable honest and potentially critical contributions. Close relationships as well as trust built over time between working-group members and researchers in residence also served as a way to bolster openness and honesty. Emotional wellbeing was also ensured through consistent and timely communication, incorporating both professional and personalised interactions (e.g. follow-up on prior conversations or individual circumstances). This approach was intended to signal respect for participants as individuals and to reinforce their sense of value and engagement with the project. Boundaries were also adhered to by safeguarding personal contact information, and obtaining explicit consent before sharing any participant-related information within the research team.

EbyE working group impact log

How was the information collected?

Six months into the partnership, a Public Involvement Impact log was introduced, documenting how the working group influenced different strands of the KRP project. This approach has been used by many health and social care research teams (e.g. Mann et al., 2018; UCL, n.d.) to capture EbyE involvement activities across projects. The log, which can be viewed in Appendix Table 1, records EbyE working-group members’ comments and contributions during the meeting, alongside researcher reflections and EbyE influence on the partnership. The last section of the log also maps working group activities (and meetings as whole) to the UK Standards for Public Involvement (NIHR, 2019): inclusive opportunities, working together, support and learning, governance, communications and impact.

Alongside the impact log, and with the input of the EbyE working-group members, a way of visually tracking the continued impact of KRP’s work on specific elements has also been developed. The visualisation focuses on separate elements of the partnership, and summarises EbyE working group member impact over all the meetings where that element is discussed. Figure 2 provides an example of one such element – Communities of Practice (COPs) (Hashem et al., 2024).

Figure 2.

EbyE impact on Communities of Practice

What did we find?

As Figure 2 demonstrates, EbyE input has been instrumental in determining the content and format of priority-setting events, including piloting prioritisation/ranking processes. This was to both ‘sense-check’ the approach, and also to ensure that experts by experience, both within and external to the working group, found the event accessible and felt able to share their views and opinions. Working-group members were also crucial in ‘translating’ priority areas into CoPs, commenting on early versions of CoP conceptual frameworks and focus. In subsequent meetings, members informed timings for the newly established CoPs and associated digital platforms, and helped to define Researcher-in-Residence roles for supporting the CoPs. Further input involved advising on drop-in IT sessions for CoP members, as well as comments on the content and structure of the CoP handbook.

The CoP example demonstrates the potential for the impact log and its associated timeline visualisation to capture the substantial and tangible changes that EbyE input makes to the partnership. Updating and circulating the log in a timely manner ahead of each group meeting has ensured that nothing has been missed and has been a useful tool to promote ongoing discussion about EbyE impact.

A limitation of the impact log, however, is that it does not record members’ experiences or the impact their ongoing involvement has on them. To evaluate these elements, additional methods were used, including a survey.

The Cube evaluation

How was the information collected?

The work of the EbyE working group coincided with the piloting of a new public involvement, NIHR-sponsored, three-dimensional tool called the ‘Cube’ evaluation.

This digital web-based framework derived from Rauch & Jordan’s (2021) work aims to gather anonymous and self-reported levels of involvement within a research project or an EbyE group. The Cube presents four questions which are answered on a sliding scale leading to immediate visual feedback of how far EbyE feel they are involved in the KRP. It taps into people’s perceptions of power, that is, who holds the power in the partnership: is it researchers/EbyE group leads or is it EbyE themselves (Hinton et al., 2023).

The four questions were adapted from the original Cube evaluation tool for specific use with the KRP by AB. They covered (1) different ways to participate, (2) having a voice in discussions and decisions, (3) the ability to set and influence the agenda and (4) the ability to create change based on own input (see Table 1 for details). Following a presentation of the Cube, including reasons for its use and how results might benefit the group, nine working-group members individually generated a response to the set questions during a meeting in March 2023. The Cube display shown in Figure 3 combined responses from EbyE group members.

Figure 3.

Screenshot of the Cube. Each dimension is on a different axis: Contribute on the x-axis, Voice on the y-axis, Agenda on the z-axis and change as colour of the data point (yellow is neutral; red is resists change; green is willing to change)

Table 1.

Cube questions

Cube dimension	Question*
Contribute	Do you think there are different ways for people to participate in the Kent Research Partnership Working Group activities and contribute to its future directions?
Voice	Do you feel you have a strong or weak voice in decisions about Kent Research Partnership working group activities and its future directions? A strong voice participates in discussions, makes suggestions, and influences decisions. A weak voice participates in discussions but has little chance of making suggestions or influencing decisions.
Agenda	Who sets the agenda? Do you think that you can influence the Working Group’s agenda and its forward direction? If so, why? If not, what are the barriers?
Change	How much of the Kent Research Partnership Working Group agenda and its future directions do you think will change or have changed based on your suggestions and input?

• *Each of the four questions ended with ‘If so, why? If not, what are the barriers?’; there were also free-text boxes for people to make additional comments if they wished.

What did we find?

While no results were in ‘red’, meaning there was no resistance to change by KRP staff, the sliding scale and free-text comments showed mixed feelings about involvement in the partnership. Responses were, however, mostly positive. Those who did not feel they contributed in a multitude of ways might have felt this way because they were relatively new to the group; people commented that more opportunities became apparent as people bedded into the role. Over half of respondents felt they had a ‘strong voice’, although they recognised this might be because they were naturally ‘expressive’ and/or ‘respected’ by others.

When asked about the influence people felt they had over the EbyE working group and its forward direction, including the agenda, the sliding scale suggested that the KRP (staff) team mostly set the agenda and direction. However, free-text responses indicated some felt they could ‘100% [be influential]’ (EbyE2) and there was ‘always opportunity for influencing what happens in the group’ (EbyE5), in addition to feeling ‘listened to’ (EbyE3). Others were not so positive and said that understanding the terminology and information was a barrier (Beresford, 2013; Dawson et al., 2018). Their free text indicated some felt they needed to justify requests to influence agendas: ‘I think that if I ask for an item to put on the agenda and give a good reason for it, it will be added’ (EbyE1). Further, ‘we are asked for AOB etc and we are able to contribute once the agenda is sent’ (EbyE6), again suggesting that people’s feedback is invited post-meeting and post-agenda-setting rather than at the planning stage. As a result of the Cube evaluation, the co-leads have worked further on addressing power imbalances in the way contributions and ownership of the group are encouraged, and in transparent communication of progress, focusing on involving rather merely informing group members.

Finally, when asked if the KRP’s agenda and direction has changed or will change as a result of group members’ input, responses included ‘100%’ (EbyE2). People felt they could influence research fellowship application outcomes and noted there was no ‘resistance to change’ (EbyE6). In line with the survey results, respondents wished to increase group diversity (e.g. involving young people and a wider range of carers), suggesting a wider recognition that their impact could be greater: ‘As a group I think that we are trying to change this’ (EbyE8).

The core partnership team reflected on the ‘power imbalances’ identified in the Cube evaluation, particularly that working-group members did not feel able to set the agenda. Efforts to address this were gradual, and many occurred beyond the period reported in this paper. Changes included revisions to working-group meeting practices, with the EbyE co-lead more proactively inviting agenda items from group members, and two working-group members taking over responsibility for impact logging. Alterations to the format of the impact log and to who collected the data limited comparability across all timepoints; however, this was considered a worthwhile trade-off to enable power-sharing and greater group ownership by EbyEs. Power-sharing also extended beyond working-group meetings, with some members becoming co-chairs of CoPs and facilitating partnership events.

Reflections on process and impact

In addition to evaluating impact as covered previously, the KRP team members with responsibility for supporting the EbyE group have also routinely met to reflect and consider both the process and the impact of the EbyE activities. Presented below are reflections from JP, the working group co-lead, and AB, the PPI adviser for the KRP.

Conclusions

Undertaking social care research without EbyE perspectives runs the risk of missing important elements pertaining to the feasibility, scope and execution of the project (Staley, 2013). When researchers and EbyE come together and have honest and robust discussions about aspects of the project while truly acknowledging and valuing each other’s positions it is unsurprising that real and tangible changes to the project and its activities happen (McVey et al., 2023). Opportunities to work together and good intentions from researchers who, by definition of research projects or initiatives, hold the power, is not in itself sufficient (McVey et al., 2023). Checking-in with EbyEs throughout the process is paramount. As discussed, the use of iterative evaluation enabled us to identify and respond to issues related to power-sharing with EbyEs over time. This process can also challenge commonly held perspectives on what ‘good’ EbyE involvement looks like. For example, researcher perspectives suggest that EbyE involvement should begin as early as possible (e.g. Jackson et al., 2020). While this remains broadly appropriate, our findings indicate that further consideration may be needed regarding the timing and scale of EbyE involvement. Although the working group was established early in line with best practice, members reported that the initial six months lacked momentum and risked frustration. In this context, a delayed or more phased establishment of the working group may have been preferable. It is therefore crucial for EbyE groups to continually share their involvement experiences so that necessary changes can be made. Care must also be taken to provide feedback to EbyE on the value of their input (Wilson et al., 2015).

Our paper goes further, to emphasise that a single evaluation tool is unlikely to be sufficient or adequately uncover both EbyE experiences and impact. The impact log has clearly demonstrated how the KRP has and continues to benefit from EbyE input on its various work packages and elements. On its own, however, it would not have captured how working-group members felt or how their experiences (and the working group overall) could be improved. The biannual anonymous survey has enabled challenges and issues to be shared as well as positive feedback and allows the group to comment on whether subsequent changes have resulted in improvements. However, further challenges of power imbalances were uncovered via the Cube evaluation which in particular showed space for improvement. Our approach to evaluation is consistent with participatory and co-production evaluation approaches and frameworks. These approaches emphasise shared control in generating evaluative knowledge (Leask et al., 2019), position iterative and participatory evaluation as an integral part of the co-creation cycle rather than an external add-on (Agnello et al., 2024; McLean et al., 2023), and advocate for the use of both formative and summative multi-method approaches that are responsive to stakeholder priorities and changing contexts (Lee et al., 2022).

Nonetheless, EbyE involvement is usually evaluated in relation to research projects (Greenhalgh et al., 2019). This paper instead showcases the impact of and reflections on EbyE involvement in a research capacity-building initiative, co-led by an academic team and a local authority. A different kind of research involvement has therefore been covered with some notable differences from existing literature. For example, the broad remit of research-capacity building makes it more difficult to have a shared understanding of goals compared to more concrete EbyE input in a traditional research project. Even when there is a shared understanding of purpose, as had developed by the second survey timepoint, the slow pace of change in research-capacity building can be frustrating to EbyEs, especially for those with research steering or advisory group experience. Impact is also less self-evident to EbyEs, underscoring the importance of routinely feeding back on impact made. Lastly, engaging EbyEs in research as early as possible is recommended (e.g. Dawson et al., 2020) to democratise research, but this might not fit research-capacity initiatives so well, where the initial pace may result in frustrations and/or disengagement of EbyEs.

EbyE involvement in health and social care research in the UK has predominantly focused on health topics (Brett et al., 2014). ASC research initiatives have not been extensively covered in PPI literature, with the exception of lived-experience input in social work research (Cossar & Neil, 2015). As the literature is dominated by healthcare perspectives, social care researchers typically draw from healthcare research/guidance when setting up and facilitating EbyE involvement and engagement. In addition to offering a detailed and reflective account of the EbyE working group as part of an ASC research capacity-building partnership, this paper goes some way to suggest PPI approaches in health research may not be suitable to ‘lift and shift’ across to social care research. Our EbyE working group evaluation to date has not explicitly focused on how and why EbyE involvement may be different in ASC research; this is now a focus of future evaluative work within KRP. Nonetheless, as discussed previously, working-group members have repeatedly remarked on both the breadth of aspects that social care covers, and the magnitude of challenges the sector currently faces, suggesting that it is, indeed, ‘different in social care’.

To conclude, evaluating EbyE involvement in research-capacity-building initiatives in adult social care is feasible, but requires careful, iterative, multi-method evaluation. Both EbyE activities and the evaluation itself benefits from being informed by EbyEs themselves. This ensures that lived experience is represented in leadership structures (e.g. EbyE group leadership and partnership co-applicant roles), which then goes towards ‘flattening’ unequal power structures between researchers and people with lived experience. Such an approach to evaluation then allows the prompt spotting and addressing of arising challenges, further benefiting EbyE involvement and the partnership overall.

Declarations and conflicts of interest