Involving Experts by Experience in Adult Social Care Research Capacity Building: Impact and Reflections

Involving Experts by Experience in Adult Social Care Research Capacity Building: Impact and Reflections | Research Square window.SnipcartSettings = { analytics: { enabled: false } }; (function() { var accessVector = localStorage.getItem('access_vector') || ''; window.dataLayer = window.dataLayer || []; if (accessVector) { window.dataLayer.push({ user: { profile: { profileInfo: { snid: accessVector } } } }); } })(); (function(w,d,s,l,i){w[l]=w[l]||[];w[l].push({'gtm.start':new Date().getTime(),event:'gtm.js'});var f=d.getElementsByTagName(s)[0],j=d.createElement(s),dl=l!='dataLayer'?'&l='+l:'';j.async=true;j.src='https://www.googletagmanager.com/gtm.js?id='+i+dl;f.parentNode.insertBefore(j,f);})(window,document,'script','dataLayer','GTM-K279D39R'); Browse Preprints In Review Journals COVID-19 Preprints AJE Video Bytes Research Tools Research Promotion AJE Professional Editing AJE Rubriq About Preprint Platform In Review Editorial Policies Our Team Advisory Board Help Center Sign In Submit a Preprint Cite Share Download PDF Research Article Involving Experts by Experience in Adult Social Care Research Capacity Building: Impact and Reflections Rasa Mikelyte, Amanda Bates, John Potts, Georgina Walton, Olivia Trapp, and 3 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-8821574/v1 This work is licensed under a CC BY 4.0 License Status: Posted Version 1 posted You are reading this latest preprint version Abstract To ensure that adult social care delivery is informed by evidence, it is crucial to establish links between the social care workforce, researchers, and people with lived experience of accessing services, as well as their families/carers. The Kent Research Partnership is one such research capacity building initiative in adult social care, supported by a public-led Expert by Experience (EbyE) working group. This 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: (1) an impact log, (2) bi-annual surveys and (3) an NIHR-sponsored ‘CUBE’ evaluation on the quality of public involvement and partnership working and show that each have enabled us to capture different aspects of EbyE impact. Based on this, we argue that a single evaluation tool is unlikely to be sufficient, or adequately uncover both EbyE experiences and impact. EbyE impact is typically captured as part of research projects. Novelly, this paper showcases the impact of and reflections on EbyE involvement in a research capacity building initiative, which has a broader and more emergent remit. adult social care research capacity experts by experience evaluation impact reflections Figures Figure 1 Figure 2 Figure 3 KEY MESSAGES Involving Experts by Experience in advisory and participatory roles within a research capacity building initiative in adult social care is achievable and shows positive impact However, to benefit both the initiative and the Experts by Experience themselves, the involvement process requires careful, iterative, multi-method evaluation Such evaluation then open opportunities to spot challenges in a timely manner and address them 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 (Kings Fund, 2023). 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 (ibid). ASC is fragmented, with services delivered by statutory, private and charity sectors (Bayliss and 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 and Bacon, 2004; Steventon et al, 2012). There is both a notable gap between research and practice in how ASC is delivered (MacIntyre and Paul, 2013; Marshall et al., 2016), and an increasing deficit in research capacity across the ASC workforce (MacIntyre and 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 and Clart, 2019, p.1). To achieve this, 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 and 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 2012) who challenged the pervasive rhetoric around the passivity of research ‘subjects’, positioning the researcher as all-powerful and all-knowledgeable. It is not rocket science 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) KRP is one of six ASC partnerships in England funded by the NIHR. Over the 4-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 (ibid). The partnership has four interlinked streams of work: (1) hosting communities of practice, that bring a range of stakeholders together in ASC and aims 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. 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 bi-monthly to review existing partnership activities and seek areas of change and improvement. Group members were recruited through JP 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 9 members, with 2 people subsequently leaving (both citing time/work pressures as the reason) and 5 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). [Insert Figure 1 about here] 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. Group members have engaged in all streams of the Kent Research Partnership work. Box 1 outlines some examples. Box 1. Summary of EbyE working group activities The working group members have: provided advice on event content and structure helped refine researcher-in-residence roles and their remit took part in setting regional priorities for ASC research in Kent helped to translate regional research priorities into communities of practice guided research training focus and process of training delivery provided advice on making digital platforms (for meetings and information sharing) inclusive and accessible contributed to KRP newsletters by: authoring content advising on what content the newsletter should contain reviewing newsletter pieces supporting Training and Research fellowship applicants’ by commenting on Plain English Summaries pre-submission in some cases meeting fellowship applicants pre-submission for more in-depth discussions and advice taking part in the fellowship funding panel continuing to advise successful Training and Research fellows, including some group members being part of project steering groups and/or commenting on recruitment and data collection strategies informing how the impact of working group meetings is recorded and evaluated joining and remaining active in research-focussed KRP Communities of Practice, both as participants and, in some meetings, as speakers. attending training sessions aimed at ASC workforce and delivered by the partnership six EbyE working group members acting as contributors on a response to the call for evidence for the House of Lords select committee inquiry titled ‘Lifting the veil: Removing the invisibility of adult social care’ (Towers et al., 2022). 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, bi-annual surveys, and an NIHR-sponsored ‘CUBE’ evaluation on the quality of public involvement and partnership working. These approaches are described in detail below. Ethical permission for the evaluation of the Kent Research Partnership, including its EbyE working group was granted by the University of Kent Staff Review Committee (Application: 0708). 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, 2024) to capture EbyE involvement activities across projects. The log, which can be viewed in Supplementary Material 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 continued impact on specific elements of KRP’s work 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, 2023, p3). 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 communities of practice, 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. [insert figure 2 here] 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. Bi-Annual Survey How was the information collected? To uncover barriers and facilitators to involvement, a survey was devised by the working group, with input from the PPI advisor (AB). The survey asked group members to feedback (anonymously) on their experiences of being involved in the partnership. The survey is circulated, completed, and discussed at six monthly intervals to assess overall satisfaction with participation and explore how group member perceptions and experiences evolve over time. The first two waves of the survey (September/October 2022 and April/May 2023) are reported here. At both baseline and 6 months later, the survey was completed by 6 working group members; as the survey is anonymous, it is impossible to say with confidence how many group members completed both surveys. Open-ended questions covered the following topics: (1) importance of respondent / EbyE working group involvement in the KRP; (2) the most important contribution made by the EbyE working group; (3) the most important contribution made by the survey respondent; (4) other significant contributions; (5) greatest source of satisfaction in working with the wider KRP team; 6) barriers and facilitators of working with the wider KRP team; (7) lessons that could be learnt (for the respondent and/or the wider team; and (8) any other comments. Responses were thematically analysed for common trends and analysis resulted in three main themes: the purpose of the EbyE working group, the way being part of the group benefitted the members themselves, and taking the group forward. What did we find? In terms of the purpose of the EbyE group , member responses focussed on sharing their own experiences and learning from the diverse experiences of others and raising the profile of ASC. However, the initial survey also revealed some uncertainty about the group’s role, with two of the six respondents considering it to be a steering or a project oversight group. “[Group’s purpose is] to ensure that social care gets the higher profile it deserves, and the working group is there to promote it and have oversight ” (EE_T1_R6) Six months later, completing identical survey questions, the respondents were more unanimous in how they defined the importance of being involved in the EbyE working group and its purpose – that of ensuring EbyE perspectives were represented in and informed the KRP. “Knowing there’s a common purpose/goal and that all contributors are like minded in the desire for change and to make it happen” (EE_T2_R2) When asked about the most important contributions made by the working group, respondents at both survey timepoints spoke of “being able to support the [KRP] team working on this” (EE_T1_R6), “ ability to question, particularly the researchers in residence” (EE_T1_R4), “establishing Communities of Practice” (EE_T1_R5), “ highlighting the reality of people's experiences and needs ” (EE_T2_R4), as well as “ raising awareness of how difficult it can be to access support” (EE_T1_R2). As well as seeing an overall group purpose, members reported personal benefits of EbyE working group membership. For many, group activities (including training) have improved research knowledge: “ My knowledge of research has greatly improved and the ability to also see others viewpoints” (EE_T1_R5) Some respondents stressed the importance of feeling useful and intellectually stimulated, which was characteristic of survey responses at both timepoints: “ Having given up work to care this project allows me to carry on using my brain again. Part of a team. Caring can be isolating and at some points quite monotonous so it is nice to have something to work towards” (EE_T1_R5) “ Being included in the Group has revived my interest in research” (EE_T2_R6) The group also commented on ways to take the group forward in the future and identified existing barriers. At both survey timepoints, group members referred to challenges in finding time to attend meetings and contribute: “ Time is the greatest barrier, but it is something we feel needs to be very high on our priority list” (EE_T2_R6) In terms of personal benefits that in turn benefit the entire group, members expressed a growing appreciation for the magnitude of challenges facing both the ASC sector and specifically ASC research: “ Social care is a huge area to research; lack of progress to solve its difficulties is arguably due to being 'overwhelmed'” (EE_T1_R3) In fact, many respondents stressed the importance of bi-directional learning – researchers learning from the EbyE working group members, and group members benefitting from researchers. “ Researchers learn the value of working with volunteers and we have learned that we can be involved in research without knowing the technicalities, and that it is a very rewarding path to follow” (EE_T1_R5) “ We find the research team we work with are extremely well motivated, well prepared […] and some of their enthusiasm rubs off on the other contributors to the group ” (EE_T1_R4) In terms of taking the group forward, members shared desired changes, particularly in the first survey. This was partly about identifying barriers, which tended to be practical in nature: “ Only tech issues, it would be lovely to have some face to face [meetings]” ( EE_T1_R5) The KRP team have attempted to address this feedback by providing in-person opportunities (including a celebratory get-together and holding some co-production training sessions in-person), in addition to delivering six bespoke technological support drop-in sessions for group members and wider stakeholders and providing equipment such as web cameras. Nonetheless, and despite a £5 additional allowance for home-working which is meant to subsidise costs for internet access, digital accessibility, and Wi-Fi connectivity in particular, remained the most frequently mentioned barriers in the second survey. “ The need to provide free Wi-Fi ” (EE_T2_R2) Practical challenges were only one aspect of desired changes and ideas on how to move the group forward. Greater representation of younger people in the group was wished for (which the working group leads and the wider KRP team have worked on since, with limited success): “It would be nice to see a wider range of ages of carers and cared for represented in the group. Young people should have a voice in their future care and this is the place for them to be included” (EE_T1_R2) Opportunities to make an impact and progress the partnership were also important to respondents to the first survey: “ To date progress has felt slow, but as more bits of the process come together, progress seems to be accelerating” (EE_T1_R4) Six months later, pace no longer came up as a concern. Providing a clearer account of the group’s impact and whether progress is on track was also desired. “More precise and regular updates on progress would be helpful and give us a sense that things are moving forward. This would give us more confidence that we are on track to deliver” (EE_T2_R4) Visualisation of the impact log (Figure 2), the continued surveys, and particularly the ‘CUBE’ evaluation (below), as well as this paper have all been attempts to provide a clearer account of both progress and impact. Overall, the two waves of the EbyE working group member survey have allowed us to track group member experiences and anonymously capture challenges, and desired changes, for the working group co-leads and the KRP team to address. In terms of impact, the survey showed that group members have gained a clearer understanding of their roles and the purpose of the working group, as well as a deeper knowledge of research and practice in ASC. The Cube evaluation is the third evaluative approach with EbyE working group members and allowed for a quantifiable ‘snapshot’ metric of felt active involvement, and influence or power over the working group. 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, four-dimensional tool called the ‘Cube Evaluation.’ This digital web-based framework derived from Rauch and 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 i.e. 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 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) 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, the Cube (see Figure 3) was co-generated by nine EbyE group members in March 2023. 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. [insert Figure 3 here] 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, 2017). 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, focussing 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 member’s 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). Reflections on process and impact In addition to evaluating impact as covered above, the Kent Research Partnership 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 Patient and Public Involvement (PPI) adviser for the Kent Research Partnership. Reflections from the EbyE working group co-lead As a co-applicant to the partnership, I was delighted to take on the role of co-lead of the EbyE working group together with a senior local authority manager. Our individual skills and experience complemented each other in developing the group. Through our personal networks with both KCC and other Health and Social Care providers, as well as EbyE attendees of the initial Partnership Networking events, we engaged a good representation of members. There is always room for improvement, and we continue to seek younger members and to always broaden the demographics of the group. Working with the group we recognised that some co-production training to bring members to a common standard would be of benefit to the group members. Having agreed the need with the group we used an external training organisation to run a 4-session event (2 virtual and 2 face-to-face). This approach had a significant impact on the team dynamics as up to this point there had been no face-to-face meetings. The lessons learnt in respect of co-production were recognised by all and a further follow-up event was held in January this year. We have established bi-monthly meetings to ensure the group are kept updated on the overall Partnership and can all share the achievements and future tasks of the group. The introduction of our Impact Log, which is now managed by group members, continues to demonstrate the work of the group. On reflection, we could have delayed the formation of the group by up to 6 months to ensure that we had initial work and tasks for the group to keep them better-motivated. It has been encouraging to see the willingness of our members to get involved and they have proved to be a valuable asset to the partnership, especially for their work with the Communities of Practice and involvement with the selection and support of the Research and Training Fellowships. A further output from the group has been the publication of Co-production and Team internal working papers. Along with the other group members, I look forward to continuing to develop the role of our group and its contribution to the continuing success of the Partnership. Through the development of the group, we have enabled members to self-develop, which has built considerable new Research capability. Overall, this has been a very interesting and rewarding role, seeing the development of the individuals and the impact on the Partnership together with seeing the principles of co-production across the Partnership. Reflections on payments from the PPI Adviser As PPI Lead for a health and social care research centre, and PPI Adviser on the KRP, the issue of PPI/EbyE payments is often difficult to navigate. The current project was no exception. Originally, payment to EbyE working group members was to be made by the partner institution who held the PPI budget, but this proved too complicated in terms of processes and systems. Institutional barriers to EbyE payments are frustratingly common and often pertain to institutions not being setup for EbyE payments (Selman et al., 2021). Another project partner institution was already setup to pay EbyE in a non-onerous way (EbyEs complete a short claim form declaring they are not an employee and are responsible for paying tax and National Insurance) so this institution facilitated EbyE payments instead. BACS payment (Bankers’ Automated Clearing System; a secure electronic payment method) is made within 4-6 weeks although ideally the timeframe would be shorter. The claim form also makes clear that accepting payment could affect people’s entitlement to certain benefits. This is a complex and sensitive area and as such risks to benefit entitlement was highlighted before people joined the group and it was raised again at the introductory meeting. Whilst important as research/ PPI advisers to not set ourselves up as benefits specialists, it is appropriate to flag this potential issue and to signpost people to appropriate support (e.g. the NIHR Benefits Advice Service co-ordinated by the Bedford Citizens Advice Bureau for EbyE involved in NIHR funded projects). The project started during the COVID pandemic which resulted in a further EbyE finance issue. It was originally planned that EbyE group meetings would be in-person and as such, travel expenses and refreshments would be covered. However, online meetings were the only available option in the initial phases of the project and meeting online has continued in line with group member’s preferences. We were therefore aware that group members were not offered refreshments due to home-working and were also paying for electricity and the Internet. Therefore, NIHR guidance around covering costs for remote/homeworking led to an additional £5 payment to group members as well as their meeting attendance payment. It was also apparent that not all group members chose to claim or were able to claim. Therefore, we wished to thank people for their time in other ways and as such, we sought agreement from NIHR to offer a thank you voucher to those who were not claiming payment (with the caveat that accepting vouchers can still impact benefits). It was also agreed to send “letterbox hampers” to group members six times a year as a thank you but also to acknowledge that catering was not being automatically arranged due to online meetings. 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 (Stanley, 2013). When researchers and EbyE come together and have honest and robust discussions about aspects of the project whilst 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 (ibid). It is crucial for Expert-by-Experience groups to continually share their involvement experiences so 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 bi-annual 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. EbyE involvement is usually written about 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 as 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 focussed 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 and Neil, 2015). As the literature is dominated by healthcare perspectives, social care researchers care 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 focussed 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 above, 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 approach to evaluation then allows to promptly spot and address arising challenges, further benefiting EbyE involvement and the partnership overall. Declarations Research ethics statement The authors declare that ethical approval for the evaluation elements of the Kent Research Partnership was obtained from the University of Kent Staff Ethics Review Committee (Reference: 0708). Consent for publication statement This article uses data from the Expert by Experience group for evaluation and critical reflection. The authors declare that consent to publication of findings – including quotations and any personal or identifiable information – was secured prior to publication. Conflicts of interest statement The authors declare no conflicts of interest with this work. All efforts to sufficiently anonymise the authors during peer review of this article have been made. The authors declare no further conflicts with this article. Funding The project was funded by the National Institute of Health and Care Research (Award ID: NIHR131373). Acknowledgements The authors wish to express their sincere gratitude to the Working Group members for their dedication and contributions to the Kent Research Partnership, without which this paper could not have been produced. We also extend our thanks to the Partnership’s wider collaborators, including Applied Research Collaboration Kent Surrey and Sussex (which partly or fully funds authors RM, WZ and VA), Kent Integrated Care Alliance, Clinical Research Network Kent Surrey and Sussex, the National Care Forum, and Home Care Association. Author Biographies Dr Rasa Mikelyte is a Dementia Research Fellow at the Centre for Health Services Studies, University of Kent. Her main areas of research expertise are dementia care, adult social care, and palliative care. She has extensive experience in co-production and expert-by-experience involvement in research. Dr Amanda Bates is a Patient and Public Involvement Lead at the Centre for Health Services Studies, University of Kent. She provides best practice guidance and support to colleagues and stakeholders on involving experts-by-experience across health and social care research projects as well as facilitating, training and supporting two departmental EbyE groups. John Potts is a member of his local Patient Participation Group and of the Kent County Council’s Peoples’ Panel, where he represents the Patients and Public views. John co-leads the Kent Research Partnership's (KRP) Lived Experience Working Group and has also provided support and guidance on all aspects of KRP work, ensuring that the voice of the public, and particularly people supported by adult social care services, is heard at all times. Gina Walton is Digital and Innovation Lead at Kent County Council, and co-lead of the Kent Research Partnership. She co-leads the Lived Experience Working Group alongside John Potts, ensuring that the group is involved in all aspects of the project. She has extensive experience in co-production in other innovation projects and has worked in Adult Social Care for 15 years in various change and programme management roles. Lilly Trapp is a Research Facilitator for Adult Social Care at Kent County Council, co-located at the Centre for Health Services Studies at the University of Kent as part of the Kent Research Partnership’s Researchers-in-Residence. Lilly has extensively supported the Lived Experience Working Group. Dr Wenjing Zhang is a Research Fellow at the Centre for Health Services Studies at the University of Kent, who also works as a Researcher in Residence for the Kent Research Partnership. Her research focuses on social care, ageing and social policy. She has led co-production projects supporting older people’s moves into and between social care settings. Dr Vanessa Abrahamson is a Research Fellow at the Centre for Health Services Studies, University of Kent, who also works as a Researcher in Residence for the Kent Research Partnership. Qualitative researcher with expertise in co-production and realist evaluation. Interests include end-of-life care, community rehabilitation and evaluating complex interventions. Prof Ann-Marie Towers is Deputy Director of the Health and Social Care Workforce Research Unit, at the Policy Institute, King’s College London and holds honorary contracts at the University of Kent and the UK Health Security Agency. She is a mixed-methods researcher, with expertise in outcome measurement, workforce, care homes, dementia and research capacity building. Ann-Marie co-leads the Kent Research Partnership. References Angell KL, Kreshka MA, McCoy R, Donnelly P, Turner-Cobb JM, Graddy K, Kraemer HC, Koopman C (2003) Psychosocial intervention for rural women with breast cancer: The Sierra Stanford partnership. 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Accessed 8 May 2024. https://www.healthwatchkent.co.uk/news/2019-10-11/kent-county-council-peoples-panel Higgins M, Lenette C (2024) Disrupting the Academy with Lived Experience-Led Knowledge: Decolonising and Disrupting the Academy. Policy, Bristol Hinton EC, Fenwick C, Hall M, Bell M, Hamilton-Shield JP, Gibson A (2023) Evaluating the benefit of early patient and public involvement for product development and testing with small companies. Health Expect 26(3):1159–1169 Holmes D, Bowyer S, Smith L (2021) ‘Supporting evidence-informed practice with children and families, young people and adults’. Research In Practice. Accessed 26 April 2024. https://www.researchinpractice.org.uk/all/news-views/2021/march/supporting-evidence-informed-practice-with-children-and-families-young-people-and-adults/ Hudson B (2021) Dilemmas in the provision of adult social care. In: Hudson B (ed) Clients, Consumers or Citizens? Policy, Bristol, pp 47–62 MacIntyre G, and Paul S (2013) Teaching research in social work: Capacity and challenge. Br J Social Work 43(4):685–702 Mann C, Chilcott S, Plumb K, Brooks E, Man MS (2018) Reporting and appraising the context, process and impact of PPI on contributors, researchers and the trial during a randomised controlled trial-the 3D study. Res Involv Engagem 4:1–12 McVey L, Frost T, Issa B, Davison E, Abdulkader J, Randell R, Alvarado N, Zaman H, Hardiker N, Cheong L, V. and, Woodcock D (2023) Working together: Reflections on how to make public involvement in research work. Res Involv Engagem 9(1):14 Morago P (2010) Dissemination and implementation of evidence-based practice in the social services: A UK survey. J Evid Based Soc Work 7(5):452–465 Morrow E, Boaz A, Brearley S, Ross FM (2011) Handbook of Service User Involvement in Nursing and Healthcare Research. Wiley, Hoboken Mullen EJ, Bacon W (2004) A survey of practitioner adoption and implementation of practice guidelines and evidence-based treatments. In: Robert AR, K. and Yeager (ed) Evidence-Based Practice Manual: Research and Outcome Measures in Health and Human Services. Oxford University Press, New York, pp 210–218 National Institute for Health and Care Research (2019) ‘NIHR announces new standards for public involvement in research’. Accessed 8 April 2024. https://www.nihr.ac.uk/news/nihr-announces-new-standards-for-public-involvement-in-research/23830 National Institute for Health and Care Research (2024) ‘Involve patients’. Accessed 15 May 2024. https://www.nihr.ac.uk/health-and-care-professionals/engagement-and-participation-in-research/involve-patients.htm Rauch R, Jordan J (2021) Staff involvement in health and social care teams: Exploration using a 4-dimensional model. Clin Psychol Forum 342:42–47 Selman LE, Clement C, Douglas M, Douglas K, Taylor J, Metcalfe C, Lane JA, Horwood J (2021) Patient and public involvement in randomised clinical trials: A mixed-methods study of a clinical trials unit to identify good practice, barriers and facilitators. Trials 22:1–14 Staley K (2013) There is no paradox with PPI in research. J Med Ethics 39(3):186–187 Steventon A, Bardsley M, Billings J, Georghiou T, Lewis GH (2012) The role of matched controls in building an evidence base for hospital-avoidance schemes: A retrospective evaluation. Health Serv Res 47(4):1679–1698 The Kings Fund (2024) ‘Key facts and figures about adult social care’. Accessed 8 May 2024. https://www.kingsfund.org.uk/insight-and-analysis/data-and-charts/key-facts-figures-adult-social-care#:~:text=What%20is%20adult%20social%20care,and%20stay%20well%20and%20safe Towers A-M, Almack K, Mikelyte R, Zhang W, Keemink J, Welbourne P, McDonald G, Trapp O, Potts J, Smith N, Birks Y, Boaz A (2022) ‘Written Evidence (ASC0057) for the Adult Social Care Committee’. UK Parliament. Accessed 8 May 2024. https://committees.parliament.uk/writtenevidence/108835/pdf/ Additional Declarations The authors declare no competing interests. Cite Share Download PDF Status: Posted Version 1 posted You are reading this latest preprint version Research Square lets you share your work early, gain feedback from the community, and start making changes to your manuscript prior to peer review in a journal. As a division of Research Square Company, we’re committed to making research communication faster, fairer, and more useful. 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Also discoverable on Platform About Our Team In Review Editorial Policies Advisory Board Help Center Resources Author Services Accessibility API Access RSS feed Manage Cookie Preferences © Research Square 2026 | ISSN 2693-5015 (online) Privacy Policy Terms of Service Do Not Sell My Personal Information {"props":{"pageProps":{"initialData":{"identity":"rs-8821574","acceptedTermsAndConditions":true,"allowDirectSubmit":true,"archivedVersions":[],"articleType":"Research Article","associatedPublications":[],"authors":[{"id":587705324,"identity":"1dc602da-b6f9-40ed-9891-cecd56addee3","order_by":0,"name":"Rasa Mikelyte","email":"data:image/png;base64,iVBORw0KGgoAAAANSUhEUgAAAZAAAAAyAQMAAABI0h/eAAAABlBMVEX///8AAABVwtN+AAAACXBIWXMAAA7EAAAOxAGVKw4bAAAA+klEQVRIiWNgGAWjYBAC+wYeg4MNDBZAJvNhuChjAx4tBgf4CoBaJBh4GNiSQXxitPB/YIRo4TEmVgvvxoMzKiQS97P3fDb4uOMPA3/7ATbJGXj9wrvh4IYzEok9PGc3J848Y8AgcSaBTXIDHi12DEAtD9uAWiRyNx/mbQM67AYDm+QDPFqMGYAh9vAfUIv8m8eH/wK1yBPSYggK5I0NIFt4mJMZgVoMQFrwOczgMFDLjGMSxj1n0owNe9uMeQzPJDZb4vO+wfEe4489NTay7e2HH0v8bJOTkzt++ODNHjxaGJghlGMDlM9DIFYQwJ4oVaNgFIyCUTAyAQDlXVJyuudE1QAAAABJRU5ErkJggg==","orcid":"https://orcid.org/0000-0002-2772-8240","institution":"University of Kent","correspondingAuthor":true,"prefix":"","firstName":"Rasa","middleName":"","lastName":"Mikelyte","suffix":""},{"id":587705325,"identity":"f5c71bd0-e814-4577-a082-f0ffe00c3c41","order_by":1,"name":"Amanda Bates","email":"","orcid":"https://orcid.org/0000-0001-6370-752X","institution":"University of Kent","correspondingAuthor":false,"prefix":"","firstName":"Amanda","middleName":"","lastName":"Bates","suffix":""},{"id":587705326,"identity":"d32e3bc2-6f27-4b57-b542-eb3fdb372a52","order_by":2,"name":"John Potts","email":"","orcid":"","institution":"Member of the Public Co-leading the Lived Experience Working Group","correspondingAuthor":false,"prefix":"","firstName":"John","middleName":"","lastName":"Potts","suffix":""},{"id":587705327,"identity":"1f2c0299-d212-4497-b1bb-9bac9f81725b","order_by":3,"name":"Georgina Walton","email":"","orcid":"","institution":"Kent County Council","correspondingAuthor":false,"prefix":"","firstName":"Georgina","middleName":"","lastName":"Walton","suffix":""},{"id":587705328,"identity":"fea51b72-4f09-4238-8708-4cecb62f03ee","order_by":4,"name":"Olivia Trapp","email":"","orcid":"https://orcid.org/0009-0005-9236-231X","institution":"Kent County Council","correspondingAuthor":false,"prefix":"","firstName":"Olivia","middleName":"","lastName":"Trapp","suffix":""},{"id":587705329,"identity":"53f2d652-55e1-4691-aa77-11a82d39d9c7","order_by":5,"name":"Wenjing Zhang","email":"","orcid":"https://orcid.org/0000-0002-1810-791X","institution":"Health and Social Care Workforce Research Unit, The Policy Institute, King’s College London","correspondingAuthor":false,"prefix":"","firstName":"Wenjing","middleName":"","lastName":"Zhang","suffix":""},{"id":587705330,"identity":"42022985-fd34-4182-b4c5-d617d981ed95","order_by":6,"name":"Vanessa Abrahamson","email":"","orcid":"https://orcid.org/0000-0002-1169-9457","institution":"University of Kent","correspondingAuthor":false,"prefix":"","firstName":"Vanessa","middleName":"","lastName":"Abrahamson","suffix":""},{"id":587705331,"identity":"abd20e1b-b7ef-4568-a938-5fc0b5559105","order_by":7,"name":"Ann-Marie Towers","email":"","orcid":"https://orcid.org/0000-0003-3597-1061","institution":"Health and Social Care Workforce Research Unit, The Policy Institute, King’s College London","correspondingAuthor":false,"prefix":"","firstName":"Ann-Marie","middleName":"","lastName":"Towers","suffix":""}],"badges":[],"createdAt":"2026-02-08 12:40:54","currentVersionCode":1,"declarations":{"humanSubjects":false,"vertebrateSubjects":false,"conflictsOfInterestStatement":false,"humanSubjectEthicalGuidelines":false,"humanSubjectConsent":false,"humanSubjectClinicalTrial":false,"humanSubjectCaseReport":false,"vertebrateSubjectEthicalGuidelines":false},"doi":"10.21203/rs.3.rs-8821574/v1","doiUrl":"https://doi.org/10.21203/rs.3.rs-8821574/v1","draftVersion":[],"editorialEvents":[],"editorialNote":"","failedWorkflow":false,"files":[{"id":102288939,"identity":"69623497-e045-46df-9212-0fbe08c3f7c4","added_by":"auto","created_at":"2026-02-10 08:52:12","extension":"png","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":9771198,"visible":true,"origin":"","legend":"\u003cp\u003eWorking group member profiles, areas of interest and wider links (each box represents a different Expert by Experience; names have been redacted)\u003c/p\u003e","description":"","filename":"floatimage1.png","url":"https://assets-eu.researchsquare.com/files/rs-8821574/v1/34d6c0c6cc18b961af2d3ba1.png"},{"id":102288938,"identity":"83204069-5cc1-4406-9ecd-53631f02b63c","added_by":"auto","created_at":"2026-02-10 08:52:12","extension":"png","order_by":2,"title":"Figure 2","display":"","copyAsset":false,"role":"figure","size":1263510,"visible":true,"origin":"","legend":"\u003cp\u003eExpert by Experience Impact on Communities of Practice\u003c/p\u003e","description":"","filename":"floatimage2.png","url":"https://assets-eu.researchsquare.com/files/rs-8821574/v1/5495273a1b77a90460b21b9f.png"},{"id":102288937,"identity":"5c228113-73a6-4d43-9cf3-36dca9a4f821","added_by":"auto","created_at":"2026-02-10 08:52:12","extension":"png","order_by":3,"title":"Figure 3","display":"","copyAsset":false,"role":"figure","size":2182990,"visible":true,"origin":"","legend":"\u003cp\u003eScreenshot 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)\u003c/p\u003e","description":"","filename":"floatimage3.png","url":"https://assets-eu.researchsquare.com/files/rs-8821574/v1/982c3f1c26ac45af4e268896.png"},{"id":102298103,"identity":"fd12265c-06a6-42b3-a6ee-3cdda5e66657","added_by":"auto","created_at":"2026-02-10 10:30:39","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":13849637,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-8821574/v1/99e376ce-ebcc-4498-b9e8-66f6e4735d99.pdf"}],"financialInterests":"The authors declare no competing interests.","formattedTitle":"\u003cp\u003eInvolving Experts by Experience in Adult Social Care Research Capacity Building: Impact and Reflections\u003c/p\u003e","fulltext":[{"header":"KEY MESSAGES","content":"\u003cp\u003e \u003cul\u003e \u003cli\u003e \u003cp\u003eInvolving Experts by Experience in advisory and participatory roles within a research capacity building initiative in adult social care is achievable and shows positive impact\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eHowever, to benefit both the initiative and the Experts by Experience themselves, the involvement process requires careful, iterative, multi-method evaluation\u003c/p\u003e \u003c/li\u003e \u003cli\u003e \u003cp\u003eSuch evaluation then open opportunities to spot challenges in a timely manner and address them\u003c/p\u003e \u003c/li\u003e \u003c/ul\u003e \u003c/p\u003e"},{"header":"Research Capacity in Adult Social Care","content":"\u003cp\u003eAdult social care (ASC) covers a wide range of services in people’s own homes, day centres or care/nursing homes (Kings Fund, 2023). 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 (ibid). ASC is fragmented, with services delivered by statutory, private and charity sectors (Bayliss and 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 and Bacon, 2004; Steventon et al, 2012). There is both a notable gap between research and practice in how ASC is delivered (MacIntyre and Paul, 2013; Marshall et al., 2016), and an increasing deficit in research capacity across the ASC workforce (MacIntyre and Paul, 2013; Morago, 2010).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo 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 and Clart, 2019, p.1). To achieve this, 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).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eHistorically, 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 and 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 2012) who challenged the pervasive rhetoric around the passivity of research ‘subjects’, positioning the researcher as all-powerful and all-knowledgeable. It is not rocket science 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).\u003c/p\u003e\n\u003cp\u003eThe 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.\u003c/p\u003e\n\u003cp\u003eThis 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.\u0026nbsp;\u003c/p\u003e"},{"header":"The Kent Research Partnership (KRP)","content":"\u003cp\u003eKRP is one of six ASC partnerships in England funded by the NIHR. Over the 4-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 (ibid). The partnership has four interlinked streams of work: (1) hosting communities of practice, that bring a range of stakeholders together in ASC and aims 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\u0026rsquo;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.\u0026nbsp;\u003c/p\u003e"},{"header":"Expert by Experience Working Group","content":"\u003cp\u003eA 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 bi-monthly to review existing partnership activities and seek areas of change and improvement.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eGroup members were recruited through JP 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 9 members, with 2 people subsequently leaving (both citing time/work pressures as the reason) and 5 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).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e[Insert Figure 1 about here]\u003c/p\u003e"},{"header":"Working Group Activities","content":"\u003cp\u003eUpon formation, the\u0026nbsp;\u0026nbsp;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.\u003c/p\u003e\n\u003cp\u003eGroup members have engaged in all streams of the Kent Research Partnership work. Box 1 outlines some examples.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eBox 1. Summary of EbyE working group activities\u0026nbsp;\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eThe working group members have:\u003c/strong\u003e\u003c/p\u003e\n \u003cul\u003e\n \u003cli\u003eprovided advice on event content and structure\u003c/li\u003e\n \u003cli\u003ehelped refine researcher-in-residence roles and their remit\u003c/li\u003e\n \u003cli\u003etook part in setting regional priorities for ASC research in Kent\u0026nbsp;\u003c/li\u003e\n \u003cli\u003ehelped to translate regional research priorities into communities of practice\u003c/li\u003e\n \u003cli\u003eguided research training focus and process of training delivery\u003c/li\u003e\n \u003cli\u003eprovided advice on making digital platforms (for meetings and information sharing) inclusive and accessible\u003c/li\u003e\n \u003cli\u003econtributed to KRP newsletters by:\u003cul\u003e\n \u003cli\u003eauthoring content\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eadvising on what content the newsletter should contain\u003c/li\u003e\n \u003cli\u003ereviewing newsletter pieces\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/li\u003e\n \u003cli\u003esupporting Training and Research fellowship applicants\u0026rsquo; by\u003cul\u003e\n \u003cli\u003ecommenting on Plain English Summaries pre-submission\u003c/li\u003e\n \u003cli\u003ein some cases meeting fellowship applicants pre-submission for more in-depth discussions and advice\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/li\u003e\n \u003cli\u003etaking part in the fellowship funding panel\u003c/li\u003e\n \u003cli\u003econtinuing to advise successful Training and Research fellows, including some group members being part of project steering groups and/or commenting on recruitment and data collection strategies\u003c/li\u003e\n \u003cli\u003einforming how the impact of working group meetings is recorded and evaluated\u003c/li\u003e\n \u003cli\u003ejoining and remaining active in research-focussed KRP Communities of Practice, both as participants and, in some meetings, as speakers.\u0026nbsp;\u003c/li\u003e\n \u003cli\u003eattending training sessions aimed at ASC workforce and delivered by the partnership\u0026nbsp;\u003c/li\u003e\n \u003cli\u003esix\u0026nbsp;EbyE working group members acting as contributors on a response to the call for evidence for the House of Lords select committee inquiry titled \u0026lsquo;Lifting the veil: Removing the invisibility of adult social care\u0026rsquo; (Towers et al., 2022).\u003c/li\u003e\n \u003c/ul\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003ePart of the group activities involved both informing and participating in the evaluation of EbyE impact.\u0026nbsp;\u003c/p\u003e"},{"header":"EbyE Working Group Impact ","content":"\u003cp\u003eImpact 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, bi-annual surveys, and an NIHR-sponsored ‘CUBE’ evaluation on the quality of public involvement and partnership working. These approaches are described in detail below.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEthical permission for the evaluation of the Kent Research Partnership, including its EbyE working group was granted by the University of Kent Staff Review Committee (Application: 0708).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eEbyE Working Group Impact Log\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eHow was the information collected?\u0026nbsp;\u003c/em\u003eSix months into the partnership, a Public Involvement Impact log was introduced, documenting how the working group influenced different strands of the KRP project.\u0026nbsp;This approach has been used by many health and social care research teams (e.g. Mann et al. 2018; UCL, 2024) to capture EbyE involvement activities across projects. The log, which can be viewed in Supplementary Material 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.\u003c/p\u003e\n\u003cp\u003eAlongside the impact log, and with the input of the\u0026nbsp;EbyE working group members, a way of visually tracking continued impact on specific elements of KRP’s work 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, 2023, p3).\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWhat did we find?\u0026nbsp;\u003c/em\u003eAs 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 communities of practice, 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e[insert figure 2 here]\u003c/p\u003e\n\u003cp\u003eThe 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.\u0026nbsp;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.\u003c/p\u003e\n\u003cp\u003eA 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eBi-Annual Survey\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eHow was the information collected?\u003c/em\u003e To uncover barriers and facilitators to involvement, \u0026nbsp;a survey was devised by the working group, with input from the PPI advisor (AB). The survey asked group members to feedback (anonymously) on their experiences of being involved in the partnership. The survey is circulated, completed, and discussed at six monthly intervals to assess overall satisfaction with participation and explore how group member perceptions and experiences evolve over time. The first two waves of the survey (September/October 2022 and April/May 2023) are reported here.\u003c/p\u003e\n\u003cp\u003eAt both baseline and 6 months later, the survey was completed by 6 working group members; as the survey is anonymous, it is impossible to say with confidence how many group members completed both surveys.\u0026nbsp;Open-ended questions covered the following topics: (1) importance of respondent / EbyE working group involvement in the\u0026nbsp;KRP; (2) the most important contribution made by the EbyE working group; (3) the most important contribution made by\u0026nbsp;the survey respondent; (4) other significant contributions; (5) greatest source of satisfaction in working with the wider KRP team; 6) barriers and facilitators of working with the wider KRP team; (7) lessons that could be learnt (for the respondent and/or the wider team; and (8) any other comments. Responses were thematically analysed for common trends and analysis resulted in three main themes: the \u003cem\u003epurpose\u003c/em\u003e of the EbyE working group, the way being part of the group benefitted the members themselves, and taking the group forward.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eWhat did we find?\u0026nbsp;\u003c/em\u003eIn terms of the \u003cem\u003epurpose of the EbyE group\u003c/em\u003e, member responses focussed on sharing their own experiences and learning from the diverse experiences of others and raising the profile of ASC. However, the initial survey also revealed some uncertainty about the group’s role, with two of the six respondents considering it to be a steering or a project oversight group.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“[Group’s purpose is] to ensure that social care gets the higher profile it deserves, and the working group is there to promote it and have oversight\u003c/em\u003e” (EE_T1_R6)\u003c/p\u003e\n\u003cp\u003eSix months later, completing identical survey questions, the respondents were more unanimous in how they defined the importance of being involved in the EbyE working group and its purpose – that of ensuring EbyE perspectives were represented in and informed the KRP.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“Knowing there’s a common purpose/goal and that all contributors are like minded in the desire for change and to make it happen” (EE_T2_R2)\u0026nbsp;\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eWhen asked about the most important contributions made by the working group, respondents at both survey timepoints spoke of \u003cem\u003e“being able to support the [KRP] team working on this”\u003c/em\u003e (EE_T1_R6), “\u003cem\u003eability to question, particularly the researchers in residence”\u0026nbsp;\u003c/em\u003e(EE_T1_R4), \u003cem\u003e“establishing Communities of Practice”\u003c/em\u003e (EE_T1_R5), “\u003cem\u003ehighlighting the reality of people's experiences and needs\u003c/em\u003e”\u0026nbsp;(EE_T2_R4), as well as \u003cem\u003e“\u003c/em\u003e\u003cem\u003eraising awareness of how difficult it can be to access support”\u0026nbsp;\u003c/em\u003e(EE_T1_R2).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAs well as seeing an overall group purpose, members reported personal benefits of EbyE working group membership. For many, group activities (including training) have improved research knowledge:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eMy knowledge of research has greatly improved and the ability to also see others viewpoints”\u0026nbsp;\u003c/em\u003e(EE_T1_R5)\u003c/p\u003e\n\u003cp\u003eSome respondents stressed the importance of feeling useful and intellectually stimulated, which was characteristic of survey responses at both timepoints:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eHaving given up work to care this project allows me to carry on using my brain again. Part of a team. Caring can be isolating and at some points quite monotonous so it is nice to have something to work towards”\u003c/em\u003e (EE_T1_R5)\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eBeing included in the Group has revived my interest in research”\u003c/em\u003e (EE_T2_R6)\u003c/p\u003e\n\u003cp\u003eThe group also commented on ways to take the group forward in the future and identified existing barriers. At both survey timepoints, group members referred to challenges in finding time to attend meetings and contribute:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eTime is the greatest barrier, but it is something we feel needs to be very high on our priority list”\u003c/em\u003e (EE_T2_R6)\u003c/p\u003e\n\u003cp\u003eIn terms of personal benefits that in turn benefit the entire group, members expressed a growing appreciation for the magnitude of challenges facing both the ASC sector and specifically ASC research:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eSocial care is a huge area to research; lack of progress to solve its difficulties is arguably due to being 'overwhelmed'”\u003c/em\u003e (EE_T1_R3)\u003c/p\u003e\n\u003cp\u003eIn fact, many respondents stressed the importance of bi-directional learning – researchers learning from the EbyE working group members, and group members benefitting from researchers.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eResearchers learn the value of working with volunteers and we have learned that we can be involved in research without knowing the technicalities, and that it is a very rewarding path to follow”\u003c/em\u003e (EE_T1_R5)\u003c/p\u003e\n\u003cp\u003e“\u003cem\u003eWe find the research team we work with are extremely well motivated, well prepared […] and some of their enthusiasm rubs off on the other contributors to the group\u003c/em\u003e” (EE_T1_R4)\u003c/p\u003e\n\u003cp\u003eIn terms of taking the group forward, members shared desired changes, particularly in the first survey. This was partly about identifying barriers, which tended to be practical in nature:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eOnly tech issues, it would be lovely to have some face to face [meetings]” (\u003c/em\u003e\u003cem\u003eEE_T1_R5)\u003c/em\u003e\u003c/p\u003e\n\u003cp\u003eThe KRP team have attempted to address this feedback by providing in-person opportunities (including a celebratory get-together and holding some co-production training sessions in-person), in addition to delivering six bespoke technological support drop-in sessions for group members and wider stakeholders and providing equipment such as web cameras. Nonetheless, and despite a £5 additional allowance for home-working which is meant to subsidise costs for internet access, digital accessibility, and Wi-Fi connectivity in particular, remained the most frequently mentioned barriers in the second survey.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e“\u003cem\u003eThe need to provide free Wi-Fi\u003c/em\u003e” (EE_T2_R2)\u003c/p\u003e\n\u003cp\u003ePractical challenges were only one aspect of desired changes and ideas on how to move the group forward.\u0026nbsp;Greater representation of younger people in the group was wished for (which the working group leads and the wider KRP team have worked on since, with limited success):\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“It would be nice to see a wider range of ages of carers and cared for represented in the group. Young people should have a voice in their future care and this is the place for them to be included”\u0026nbsp;\u003c/em\u003e(EE_T1_R2)\u003c/p\u003e\n\u003cp\u003eOpportunities to make an impact and progress the partnership were also important to respondents to the first survey:\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“\u003c/em\u003e\u003cem\u003eTo date progress has felt slow, but as more bits of the process come together, progress seems to be accelerating”\u003c/em\u003e (EE_T1_R4)\u003c/p\u003e\n\u003cp\u003eSix months later, pace no longer came up as a concern. Providing a clearer account of the group’s impact and whether progress is on track was also desired.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e“More precise and regular updates on progress would be helpful and give us a sense that things are moving forward. This would give us more confidence that we are on track to deliver”\u0026nbsp;\u003c/em\u003e(EE_T2_R4)\u003c/p\u003e\n\u003cp\u003eVisualisation of the impact log (Figure 2), the continued surveys, and particularly the ‘CUBE’ evaluation (below), as well as this paper have all been attempts to provide a clearer account of both progress and impact.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOverall, the two waves of the EbyE working group member survey have allowed us to track group member experiences and \u0026nbsp;anonymously capture challenges, and desired changes, for the working group co-leads and the KRP team to address. In terms of impact, the survey showed that group members have gained a clearer understanding of their roles and the purpose of the working group, as well as a deeper knowledge of research and practice in ASC.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe Cube evaluation is the third evaluative approach with EbyE working group members and allowed for a quantifiable ‘snapshot’ metric of felt active involvement, and influence or power over the working group.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eThe ‘CUBE’ Evaluation\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003e\u003cem\u003eHow was the information collected?\u003c/em\u003e The work of the \u0026nbsp;EbyE working group coincided with the piloting of a new public involvement, NIHR-sponsored, four-dimensional tool called the ‘Cube Evaluation.’\u003c/p\u003e\n\u003cp\u003eThis digital web-based framework derived from Rauch and 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 i.e. who holds the power in the Partnership, is it researchers / EbyE group Leads or is it EbyE themselves (Hinton et al, 2023).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eThe four questions 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) 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, the Cube (see Figure 3) was co-generated by nine EbyE group members in March 2023.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTable 1. CUBE questions\u003c/p\u003e\n\u003ctable border=\"1\" cellspacing=\"0\" cellpadding=\"0\"\u003e\n \u003ctbody\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eCUBE dimension\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003e\u003cstrong\u003eQuestion*\u003c/strong\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eContribute\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eDo you think there are different ways for people to participate in the Kent Research Partnership Working Group activities and contribute to its future directions?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eVoice\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eDo you feel you have a strong or weak voice in decisions about Kent Research Partnership working group activities and its future directions?\u003cbr\u003e\u0026nbsp;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.\u0026nbsp;\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eAgenda\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eWho 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?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eChange\u003c/p\u003e\n \u003c/td\u003e\n \u003ctd valign=\"top\"\u003e\n \u003cp\u003eHow 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?\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003ctr\u003e\n \u003ctd colspan=\"2\" valign=\"top\"\u003e\n \u003cp\u003e*\u003cem\u003eEach 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.\u003c/em\u003e\u003c/p\u003e\n \u003c/td\u003e\n \u003c/tr\u003e\n \u003c/tbody\u003e\n\u003c/table\u003e\n\u003cp\u003e\u003cem\u003eWhat did we find?\u0026nbsp;\u003c/em\u003eWhile no results were in ‘red,’ meaning there was no resistance to change by KRP staff, the sliding scale and \u0026nbsp; 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e[insert Figure 3 here]\u003c/p\u003e\n\u003cp\u003eWhen 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 \u0026nbsp;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, 2017). Their free text indicated some felt they needed to justify requests to influence agendas:\u0026nbsp;“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, focussing on involving rather merely informing group members.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eFinally, when asked if the KRP’s agenda and direction has changed or will change, as a result of group member’s input, responses included “100%” (EbyE2). People felt they could influence research fellowship application outcomes and noted there was no “ resistance to change” (EbyE6). \u0026nbsp;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: \u0026nbsp;“As a group I think that we are trying to change this” (EbyE8).\u0026nbsp;\u003c/p\u003e"},{"header":"Reflections on process and impact","content":"\u003cp\u003eIn addition to evaluating impact as covered above, the Kent Research Partnership 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 Patient and Public Involvement (PPI) adviser for the Kent Research Partnership.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eReflections from the\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e\u003cem\u003eEbyE\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003cstrong\u003e\u003cem\u003eworking group co-lead\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAs a co-applicant to the partnership, I was delighted to take on the role of co-lead of the EbyE working group together with a senior local authority manager. Our individual skills and experience complemented each other in developing the group. Through our personal networks with both KCC and other Health and Social Care providers, as well as EbyE attendees of the initial Partnership Networking events, we engaged a good representation of members. There is always room for improvement, and we continue to seek younger members and to always broaden the demographics of the group.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWorking with the group we recognised that some co-production training to bring members to a common standard would be of benefit to the group members. Having agreed the need with the group we used an external training organisation to run a 4-session event (2 virtual and 2 face-to-face). This approach had a significant impact on the team dynamics as up to this point there had been no face-to-face meetings. The lessons learnt in respect of co-production were recognised by all and a further follow-up event was held in January this year. We have established bi-monthly meetings to ensure the group are kept updated on the overall Partnership and can all share the achievements and future tasks of the group. The introduction of our Impact Log, which is now managed by group members, continues to demonstrate the work of the group.\u003c/p\u003e\n\u003cp\u003eOn reflection, we could have delayed the formation of the group by up to 6 months to ensure that we had initial work and tasks for the group to keep them better-motivated. It has been encouraging to see the willingness of our members to get involved and they have proved to be a valuable asset to the partnership, especially for their work with the Communities of Practice and involvement with the selection and support of the Research and Training Fellowships. A further output from the group has been the publication of Co-production and Team internal working papers.\u003c/p\u003e\n\u003cp\u003eAlong with the other group members, I look forward to continuing to develop the role of our group and its contribution to the continuing success of the Partnership. Through the development of the group, we have enabled members to self-develop, which has built considerable new Research capability. Overall, this has been a very interesting and rewarding role, seeing the development of the individuals and the impact on the Partnership together with seeing the principles of co-production across the Partnership.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eReflections on payments from the PPI Adviser\u0026nbsp;\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eAs PPI Lead for a health and social care research centre, and PPI Adviser on the KRP, the issue of PPI/EbyE payments is often difficult to navigate. The current project was no exception. Originally, payment to EbyE working group members was to be made by the partner institution who held the PPI budget, but this proved too complicated in terms of processes and systems. Institutional barriers to EbyE payments are frustratingly common and often pertain to institutions not being setup for EbyE payments (Selman et al., 2021).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eAnother project partner institution was already setup to pay EbyE in a non-onerous way (EbyEs complete a short claim form declaring they are not an employee and are responsible for paying tax and National Insurance) so this institution facilitated EbyE payments instead. BACS payment (Bankers’ Automated Clearing System; a secure electronic payment method) is made within 4-6 weeks although ideally the timeframe would be shorter. The claim form also makes clear that accepting payment could affect people’s entitlement to certain benefits. This is a complex and sensitive area and as such risks to benefit entitlement was highlighted before people joined the group and it was raised again at the introductory meeting. Whilst important as research/ PPI advisers to not set ourselves up as benefits specialists, it is appropriate to flag this potential issue and to signpost people to appropriate support (e.g. the NIHR Benefits Advice Service co-ordinated by the Bedford Citizens Advice Bureau for EbyE involved in NIHR funded projects).\u003c/p\u003e\n\u003cp\u003eThe project started during the COVID pandemic which resulted in a further EbyE finance issue. It was originally planned that EbyE group meetings would be in-person and as such, travel expenses and refreshments would be covered. However, online meetings were the only available option in the initial phases of the project and meeting online has continued in line with group member’s preferences. We were therefore aware that group members were not offered refreshments due to home-working and were also paying for electricity and the Internet. Therefore, NIHR guidance around covering costs for remote/homeworking led to an additional £5 payment to group members as well as their meeting attendance payment. It was also apparent that not all group members chose to claim or were able to claim. Therefore, we wished to thank people for their time in other ways and as such, we sought agreement from NIHR to offer a thank you voucher to those who were not claiming payment (with the caveat that accepting vouchers can still impact benefits). It was also agreed to send “letterbox hampers” to group members six times a year as a thank you but also to acknowledge that catering was not being automatically arranged due to online meetings.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eUndertaking social care research without EbyE perspectives runs the risk of missing important elements pertaining to the feasibility, scope, and execution of the project (Stanley, 2013). When researchers and EbyE come together and have honest and robust discussions about aspects of the project whilst 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 (ibid). It is crucial for Expert-by-Experience groups to continually share their involvement experiences so 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).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eOur 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 bi-annual 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.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eEbyE involvement is usually written about 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 as well, where the initial pace may result in frustrations and/or disengagement of EbyEs.\u003c/p\u003e\n\u003cp\u003eEbyE involvement in health and social care research in the UK has predominantly focussed 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 and Neil, 2015). As the literature is dominated by healthcare perspectives, social care researchers care 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 focussed 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 above, 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.’ \u0026nbsp;\u003c/p\u003e\n\u003cp\u003eTo conclude, evaluating\u0026nbsp;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 approach to evaluation then allows to promptly spot and address arising challenges, further benefiting EbyE involvement and the partnership overall.\u003c/p\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eResearch ethics statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare that ethical approval for the evaluation elements of the Kent Research Partnership was obtained from the University of Kent Staff Ethics Review Committee (Reference: 0708).\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThis article uses data from the Expert by Experience group for evaluation and critical reflection. The authors declare that consent to publication of findings – including quotations and any personal or identifiable information – was secured prior to publication.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConflicts of interest statement\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eThe authors declare no conflicts of interest with this work. All efforts to sufficiently anonymise the authors during peer review of this article have been made. The authors declare no further conflicts with this article.\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eFunding\u003c/strong\u003e\u003c/em\u003e\u003cbr\u003e\u0026nbsp;The project was funded by the National Institute of Health and Care Research (Award ID: NIHR131373).\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cem\u003e\u003cstrong\u003eAcknowledgements\u003c/strong\u003e\u003c/em\u003e\u003cbr\u003e\u0026nbsp;The authors wish to express their sincere gratitude to the Working Group members for their dedication and contributions to the Kent Research Partnership, without which this paper could not have been produced. We also extend our thanks to the Partnership’s wider collaborators, including Applied Research Collaboration Kent Surrey and Sussex (which partly or fully funds authors RM, WZ and VA), Kent Integrated Care Alliance, Clinical Research Network Kent Surrey and Sussex, the National Care Forum, and Home Care Association.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003e\u003cem\u003eAuthor Biographies\u003c/em\u003e\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eDr Rasa Mikelyte is a Dementia Research Fellow at the Centre for Health Services Studies, University of Kent. Her main areas of research expertise are dementia care, adult social care, and palliative care. She has extensive experience in co-production and expert-by-experience involvement in research.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eDr Amanda Bates is a Patient and Public Involvement Lead at the Centre for Health Services Studies, University of Kent. She provides best practice guidance and support to colleagues and stakeholders on involving experts-by-experience across health and social care research projects as well as facilitating, training and supporting two departmental EbyE groups.\u003c/p\u003e\n\u003cp\u003eJohn Potts is a member of his local Patient Participation Group and of the Kent County Council’s Peoples’ Panel, where he represents the Patients and Public views. John co-leads the Kent Research Partnership's (KRP) Lived Experience Working Group and has also provided support and guidance on all aspects of KRP work, ensuring that the voice of the public, and particularly people supported by adult social care services, is heard at all times.\u003c/p\u003e\n\u003cp\u003eGina Walton is Digital and Innovation Lead at Kent County Council, and co-lead of the Kent Research Partnership. She co-leads the Lived Experience Working Group alongside John Potts, ensuring that the group is involved in all aspects of the project. She has extensive experience in co-production in other innovation projects and has worked in Adult Social Care for 15 years in various change and programme management roles.\u003c/p\u003e\n\u003cp\u003eLilly Trapp is a Research Facilitator for Adult Social Care at Kent County Council, co-located at the Centre for Health Services Studies at the University of Kent as part of the Kent Research Partnership’s Researchers-in-Residence. Lilly has extensively supported the Lived Experience Working Group.\u003c/p\u003e\n\u003cp\u003eDr Wenjing Zhang is a Research Fellow at the Centre for Health Services Studies at the University of Kent, who also works as a Researcher in Residence for the Kent Research Partnership. Her research focuses on social care, ageing and social policy. She has led co-production projects supporting older people’s moves into and between social care settings.\u003c/p\u003e\n\u003cp\u003eDr Vanessa Abrahamson is a Research Fellow at the Centre for Health Services Studies, University of Kent, who also works as a Researcher in Residence for the Kent Research Partnership. \u0026nbsp;Qualitative researcher with expertise in co-production and realist evaluation. Interests include end-of-life care, community rehabilitation and evaluating complex interventions.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eProf Ann-Marie Towers is Deputy Director of the Health and Social Care Workforce Research Unit, at the Policy Institute, King’s College London and holds honorary contracts at the University of Kent and the UK Health Security Agency. She is a mixed-methods researcher, with expertise in outcome measurement, workforce, care homes, dementia and research capacity building. 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Accessed 8 May 2024. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://www.kingsfund.org.uk/insight-and-analysis/data-and-charts/key-facts-figures-adult-social-care#:~:text=What%20is%20adult%20social%20care,and%20stay%20well%20and%20safe\u003c/span\u003e\u003cspan address=\"https://www.kingsfund.org.uk/insight-and-analysis/data-and-charts/key-facts-figures-adult-social-care#:~:text=What%20is%20adult%20social%20care,and%20stay%20well%20and%20safe\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e \u003cli\u003e\u003cspan\u003eTowers A-M, Almack K, Mikelyte R, Zhang W, Keemink J, Welbourne P, McDonald G, Trapp O, Potts J, Smith N, Birks Y, Boaz A (2022) \u0026lsquo;Written Evidence (ASC0057) for the Adult Social Care Committee\u0026rsquo;. UK Parliament. Accessed 8 May 2024. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://committees.parliament.uk/writtenevidence/108835/pdf/\u003c/span\u003e\u003cspan address=\"https://committees.parliament.uk/writtenevidence/108835/pdf/\" targettype=\"URL\" class=\"RefTarget\"\u003e\u003c/span\u003e\u003c/span\u003e\u003c/span\u003e\u003c/li\u003e\u003c/ol\u003e"}],"fulltextSource":"","fullText":"","funders":[],"hasAdminPriorityOnWorkflow":false,"hasManuscriptDocX":true,"hasOptedInToPreprint":true,"hasPassedJournalQc":"","hasAnyPriority":true,"hideJournal":true,"highlight":"","institution":"","isAcceptedByJournal":false,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true},"keywords":"adult social care, research capacity, experts by experience, evaluation, impact, reflections","lastPublishedDoi":"10.21203/rs.3.rs-8821574/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-8821574/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003eTo ensure that adult social care delivery is informed by evidence, it is crucial to establish links between the social care workforce, researchers, and people with lived experience of accessing services, as well as their families/carers. The Kent Research Partnership is one such research capacity building initiative in adult social care, supported by a public-led Expert by Experience (EbyE) working group. This paper discusses the nature of group activities and their model of involvement, as well as evidencing the group\u0026rsquo;s impact on the partnership overall. We present three evaluation approaches used to date: (1) an impact log, (2) bi-annual surveys and (3) an NIHR-sponsored \u0026lsquo;CUBE\u0026rsquo; evaluation on the quality of public involvement and partnership working and show that each have enabled us to capture different aspects of EbyE impact. Based on this, we argue that a single evaluation tool is unlikely to be sufficient, or adequately uncover both EbyE experiences and impact.\u003c/p\u003e \u003cp\u003eEbyE impact is typically captured as part of research projects. Novelly, this paper showcases the impact of and reflections on EbyE involvement in a research capacity building initiative, which has a broader and more emergent remit.\u003c/p\u003e","manuscriptTitle":"Involving Experts by Experience in Adult Social Care Research Capacity Building: Impact and Reflections","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2026-02-10 08:52:08","doi":"10.21203/rs.3.rs-8821574/v1","editorialEvents":[{"type":"communityComments","content":0}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"researchsquare","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":true,"externalIdentity":"","sideBox":"","snPcode":"","submissionUrl":"/submission","title":"Research Square","twitterHandle":"researchsquare","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"","reportingPortfolio":"","inReviewEnabled":false,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"a0c7a18e-3576-493c-a94c-682816b3ed1e","owner":[],"postedDate":"February 10th, 2026","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"posted","subjectAreas":[],"tags":[],"updatedAt":"2026-02-10T08:52:08+00:00","versionOfRecord":[],"versionCreatedAt":"2026-02-10 08:52:08","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-8821574","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-8821574","identity":"rs-8821574","version":["v1"]},"buildId":"XKTyCvWXoU3ODBz1xrDgd","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}