1 Introduction

The Developing research resources And minimum data set for Care Homes' Adoption and use (DACHA) study aimed to develop and pilot a minimum data set (MDS) for care homes for older people in [1]. The purpose of an MDS is to enable care coordination, governance and service planning [2]. Information on care home residents in England is currently held by different organisations (e.g., care home records, health records) and not easily shared [3].

The DACHA pilot MDS linked data routinely collected by health providers to data from care homes’ digital care records by identifying care home residents aged 65 or older in National Health Service (NHS) data sets [2]. The content of the pilot MDS was informed by literature reviews, stakeholder development workshops, surveys and public involvement (PI) [4-10]. The 4.5 years (2019–2024) study was divided into five related work packages (WPs) (Figure 1). Fourteen original collaborators came from nine universities, the National Care Forum, The Health Foundation (THF) and the Alzheimer's Society Research Network.

There are important stakeholders in this enterprise, and the means of involvement or engagement need to be tailored to their interest, preference, area of existing knowledge and communication needs. At the centre are the older people living in the care homes, and their families. Data recording or use has implications for those running and working in care homes. Health care organisations contribute to the care of older people in care homes [11]. Local authority adult social services departments and the Care Quality Commission (CQC) require data from care homes in their commissioning, quality assurance and regulatory roles. Care planning systems are moving from paper-based to digital, with a government target for 80% implementation in England by 2025 [12] therefore providers of digital care planning software are also stakeholders. Effective PI could reduce the risks of negative unintended consequences from findings and recommendations [13, 14] by weighing up implications for care practices of collecting particular information which could in future be used for benchmarking.

Meaningful PI in care home research requires relationship building between researchers and PI stakeholders, and consideration of the differing perspectives and interests of stakeholders [15]. Care home research programmes have involved public representatives at each stage of the research cycle and in project management meetings [16] and in particular roles [17] but transparency about the extent, nature and influence of PI in published care home research is varied [18] with calls for more discussion of processes and evaluation [19]. Edelman and Barron [20] argued for the evaluation of PI as a component of the research process rather than as if it were a therapeutic intervention. Indeed such evaluation positions PI members as research participants, ‘othering’ them from more agentic roles in research [21]. Rather than constructing and evaluating PI as an intervention it could be conceptualised as a social practice in which researchers and the public interact and power relations are considered [22]. It is clear that research with care homes will be most effective with authentic co-production and active collaboration between researchers and care home representatives [5].

Frith argues that PI in applied health research is best understood as an attempt to make research more democratic, with the potential to change both what is studied and the research processes, to broaden which knowledge is valued and who is involved in the production of knowledge [23]. In England, PI in health research was advocated in a national research development strategy in 1991, framed as ‘consumer’ involvement in 1996 with a publicly funded body to support it [24]. This body became INVOLVE. In 2015, the National Institute for Health and Care Research (NIHR) recommended co-production between the public, researchers and health professionals [25]. An overview of systematic reviews of PI in clinical trials identified a range of innovative PI but oriented to consultation rather than decision-making [26]. UK Standards for PI in Research were published in 2018 [27] providing practical examples of good PI but less consideration of the rationale for involving the public in research [28]. The remit of INVOLVE was taken into NIHR in 2020. Debates continue over PI should be part of the establishment with a remit to improve research processes or a socially transformative practice [24].

PI can be related to concepts of activism [29], active citizenship [30] and participatory research [31], with common arguments for the place of local and contextual knowledge, indigenous knowledge, experiential knowledge and situated knowledge, alongside scientific knowledge, in science policy [32]. Care homes are part of social care provision, which in the UK is argued to be in crisis and in need of a shift from a charity welfare to a rights-based paradigm [33]. Fricker [34] proposed a concept of epistemic justice, including hermeneutic injustice, where members of groups do not have access to equal participation in the generation of social meanings and are at a disadvantage when making sense of their social experience. We argue care home staff and relatives of care home residents can be said to experience hermeneutic injustice. They are not equally included in the generation of social meaning about data and reporting requirements for care homes. Their experience is frequently marginalised. Care workers in Ontario had few opportunities to contribute their knowledge when an MDS was implemented, framed as an experience of epistemological violence [35]. We aimed to create a structure and social relations underpinned by democratic principles in which care home staff and family members' knowledge could be recognised, valued and shape the knowledge developed by the project [34]. With the findings of earlier work feeding into later stages, we aimed for iterative engagement so that stakeholders could contribute to the developing understanding. Democratic principles underpinned the DACHA approach to PI, with the aim of enabling those least heard and most affected groups to contribute their own expertise and to advocate for others. We worked to the democratic principles that public contributors would be involved in decision making [23] in order that their contributions influenced the research process.

This paper presents an analysis of the involvement of care home staff and family members of care home residents in the DACHA project, using a social relations and democratic approach and reflection on examples of key effects over the 4 years of the study. Rather than separating out and evaluating the PI component of the study we examine it in the context of building a project and outputs that are fit for purpose.

Ethical review was not sought for this analysis of the PI process as it is not required for PI activity.

GRIPP2 reporting guidelines are followed [36].

2 Materials and Methods

3 Results

3.2 How the Involvement Influenced the DACHA Project

Influences of the involvement were extensive, pervasive and dynamic, as researchers' appreciation of the care home data context deepened, PI contributors developed understanding of research approaches and influence early on in the project had ongoing effects later. Themes are listed, illustrated with subthemes (Figure 2) and discussed below.

4 Discussion

We aimed with this paper to analyse the involvement of care home staff and family members in the context of the overall project [20, 22, 43]. The DACHA project aimed to keep the concerns and priorities of people living and working in care homes informing all stages of the project and we argue that this was achieved, as shown in the inclusion in the MDS of content prioritised by the PI Panel. We aimed to use a democratic approach, valuing different knowledges through the involvement of public contributors in decision making [23]. There is evidence in reflections from the panel that members did feel that their knowledge and experience were valued and heard. The input of the panel directly informed decisions, notably to include quality of life measures in the pilot MDS, and to link to data on community health services. The Panel was involved in implementing these decisions in the ongoing research by reviewing and giving feedback to decide which measures of quality of life should be used. There was increased work for researchers who needed to identify the data owners for community services and negotiate data-sharing agreements. Decision making in the project was progressive. Final decisions about which items to include in the MDS were ultimately taken by the research teams working on the relevant WPs, in negotiation with the RMT, in which PI team members advocated for the PI panel perspective. Decision making was therefore a process over time rather than a single event, but we argue a shift in the ‘soft’ norms, codes and values of research practice [22] was achieved, with researchers responding to and feeling accountable to PI members.

We aimed to keep these groups' priorities central to our research, in the belief that for an MDS to be useful to improve care and usable in day-to-day practice, the research approach should be of close collaboration with those groups most affected who would bring unique insights. Social care has not had the research attention that health has enjoyed. Research questions and policies for practice tend to be heavily influenced by health practice needs. Care practitioners are not traditionally represented in academia. The impact of Covid-19 further illustrated the policy neglect of the care sector [44], and strengthened our conviction for collaborative work. Researchers need to consider the political context of their research field and project [45] and relative power positions of the groups who have a legitimate interest in the research.

A democratic PI approach is fragile and can be challenged by the contractual obligations of completing a funded research project in the context of unexpected events [43]. Fragile democratic relations between the research team and the PI panel members could be argued to have been bolstered in this project by the consistent process of quarterly meetings, and by chairing that aimed to developed shared understanding and trust between Panel members and researchers attending each panel meeting. The views of the Panel were ascribed power through technical tools of agendas and reporting at both core team meetings and RMT meetings [46]. Panel members could invoke the power of authentic accounts of lived experience, but this was at times contested by researchers citing their own experience in care homes [47, 48]. Family members frustrated with the PI arrangements drew on existing social relationships to escalate these concerns, leading to feelings of vulnerability for some researchers. Social relations in PI activity are both the means for constructing shared understandings but also likely sites for misunderstanding, disappointed expectations and tension [49]. These tensions can be productive [50] but there needs to be attention to those in less powerful positions, both PI members and researchers [51].

One alternative approach to PI in this project, suggested in RMT reflections, would have been to have PI representatives linking to each WP team rather than a central Panel. This may have strengthened social relations between researchers and PI members, increased the PI members' opportunity to understand detailed aspects of the research methods and help to resolve challenges. However, this would have made it more difficult for PI to hold the overall project to account on issues such as the focus of the project including the mental health and wellbeing of people living in care homes. An ideal might be to combine both approaches, although this would need a greater time commitment from PI Panel members and increased support to negotiate the wider role.

This PI Panel brought together in the same meetings care staff, care home managers and family members of people living in care homes. There were some difficulties in voicing views and experiences openly in this mixed group at first. We made use of the function to have the individual groups meeting in smaller ‘breakout’ groups within the online meetings. As the project progressed however trust built between group members, and members valued hearing alternative perspectives. As described earlier in the paper, people living in care homes had PI facilitated by care home activity staff [37]. Further development of the PI Panel approach should consider supporting direct representation in the Panel from people living in care homes [52].

Social relations were more complex than simply between PI panel members and the research team. Many individuals had more than one role or identity [47]. The research team included members linked to practice (NCF) and with family carer experience. Researchers also have relevant family or social care practice experience. The research team grew substantially to conduct the study. Some of the team know each other well while others were working together for the first time. PI Panel members, both family members and practitioners, brought experience in other roles including research, social care practice, advocacy and volunteering [53]. These multiple roles and identities also underpin complex power relations [22, 54]. Reflections in the RMT meeting and in the PI Panel touched on these issues. Notably the concern and sense of responsibility expressed by PI Panel members either initially sceptical that a research project could be ‘realistic’, or struggling to reconcile a sense of responsibility to advocate for the care sector with personal experience of poor practice. Some PI members moved into other research related roles, meeting the policy agenda for developing social care research capacity [55]. These overlapping roles brought shared experience and empathy to the panel interactions, but also, with individuals as ‘boundary spanners’, the potential for advocating for social care research grounded in practice.

We argue there have been ‘soft’ effects from the PI process that are important for growing a social care research practice. Researchers' understanding of, and attitudes towards, residents and care home staff have benefitted from a deeper appreciation their situation. Many of us have completed the project having learned far more than can be wrapped up and capitalised on in this project and the challenge is to sustain and re-invest this learning. This project had resource for PI co-applicants to contribute to project design and committed resources to support PI throughout. While this is recommended good practice [56] it is not easy to identify funding for research development. For PI to be influential from the earliest stages of project inception it is necessary to support and sustain interest groups of, for example, care home staff and people living in care homes, beyond individual projects.

5 Conclusion

The DACHA project shows that with integrated PI, commitment demonstrated from the Chief Investigator and sufficient resources designed into the project, collaborative research leading to outcomes prioritised by those most affected can be achieved. The PI not only informed the MDS but also deepened our understanding of the context in which we were working and provided both accountability and support when there were issues. The PI exemplified a ‘social practice of dialogue and learning between researchers and the public’ [22]. The next steps of development and implementation of an MDS for care homes should build on this example of socially transformative PI practice [24], incorporating relevant knowledge and experience, to minimise negative unforeseen consequences. There is a need to tap the deep knowledge in practice by spanning boundaries between research and practice, and rapidly enhance practitioner research in social care.

Author Contributions

Anne Killett: conceptualisation, investigation, funding acquisition, writing–original draft, writing–review and editing, project administration. Kerry Micklewright: conceptualisation, investigation, writing–review and editing, formal analysis, project administration. Rachael Carroll: conceptualisation, investigation, writing–review and editing. Gizdem Akdur: writing–review and editing, project administration. Emily Allinson: writing–review and editing, investigation. Liz Crellin: investigation, writing–review and editing, formal analysis. Kaat de Corte: investigation, writing–review and editing. Margaret Fox: investigation, writing–review and editing. Barbara Hanratty: investigation, funding acquisition, writing–review and editing. Lisa Irvine: investigation, funding acquisition, writing–review and editing, project administration. Liz Jones: conceptualisation, investigation, funding acquisition, writing–review and editing. Marlene Kelly: investigation, writing–review and editing. Therese Lloyd: investigation, writing–review and editing. Julienne Meyer: conceptualisation, investigation, funding acquisition, writing–review and editing. Karen Spilsbury: conceptualisation, investigation, funding acquisition, writing–review and editing. Ann-Marie Towers: conceptualisation, investigation, funding acquisition, writing–review and editing, formal analysis. Freya Tracey: investigation, writing–review and editing, formal analysis. John Willmott: investigation, writing–review and editing. Claire Goodman: conceptualisation, investigation, funding acquisition, writing–review and editing, project administration.

Ethics Statement

The DACHA project received ethical approval for distinct elements of the research project. Work Package (WP) 2: received ethical approval from Health, Science, Engineering and Technology ECDA—University of Hertfordshire (HSK/SF/UH/04185). WP3 national care home survey: received ethical approval from Health, Science, Engineering and Technology ECDA—University of Hertfordshire (HSK/SF/UH/04301). WP5 care home pilot: received ethical approval from the London Queen's Square Research Ethics Committee (22/LO/0250). National consultation 2022: received ethical approval from Health, Science, Engineering and Technology ECDA—University of Hertfordshire (HSK/SF/UH/05009). National consultation 2023-24: received ethical approval from Health, Science, Engineering and Technology ECDA—University of Hertfordshire (HSK/SF/UH/05487). Ethical review was not sought for this analysis of the PI process as it is not required for public involvement activity.

Conflicts of Interest

Emily Allinson now works for the NIHR (but did not at outset of the project). This was not considered to be a conflict of interest by the DACHA team or the NIHR because her work is in an entirely separate department to the funding stream for this project. Since commencing employment at the NIHR she has not accepted remuneration from DACHA.