Piloting a Minimum Data Set (MDS) in English care homes: a qualitative study of professional perspectives on implementation and data use

Piloting a Minimum Data Set (MDS) in English care homes: a qualitative study of professional perspectives on implementation and data use | 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 Piloting a Minimum Data Set (MDS) in English care homes: a qualitative study of professional perspectives on implementation and data use Rachael E Carroll, Nick Smith, Sinead ER Palmer, Jennifer Kirsty Burton, and 12 more This is a preprint; it has not been peer reviewed by a journal. https://doi.org/ 10.21203/rs.3.rs-4564243/v1 This work is licensed under a CC BY 4.0 License Status: Under Review Version 1 posted 12 You are reading this latest preprint version Abstract Background digitalisation within English care homes offers potential to make more effective use of substantial data collected by staff during care planning and recording. A pilot minimum data set (MDS) was co-designed with stakeholders based on two digital care records (DCRs) with additional structured measures. Objectives to explore care home staff opinions and experiences of collecting structured measures of quality of life (QoL), cognition and function for residents and how MDS data might be used by staff and other professionals interested in care homes. Design: focus groups (FGs) and interviews Setting: three Integrated Care System (ICS) regions of England Subjects: care home staff and ICS participants Methods online FGs and interviews using a semi-structured topic guide. Data collection involved two waves of care home FGs, following MDS data capture, and one with ICS participants. Reflexive thematic analysis was used to develop themes. Results twenty-four staff from 22 homes and 16 staff from 15 homes participated in wave one and two FGs respectively. Ten ICS participants from two of three regions participated. Three themes were developed: the care home context and the importance of an MDS for care, appropriateness and relevance of QoL measures to resident care, and data quality and purpose. Conclusions it is feasible for staff to collect structured measures on resident QoL, function and cognition using DCRs to contribute to an MDS. The data generated can inform and enhance resident care. However, implementation is an evolving process requiring support, trust-building and confidence among those collecting and interpreting data. Care homes minimum data set quality of life measures implementation Figures Figure 1 Background UK care home staff collect and collate substantial data about people living in the care home to support direct care delivery and to fulfil regulatory and contractual requirements.( 1 , 2 ) Additional data about care home residents are collected by primary, secondary and community health services, social care and social work. There is significant variation in how, whether, when, and with whom these data are collected and shared, making them difficult to operationalise at scale.( 3 ) This contrasts with other jurisdictions which use minimum data sets (MDSs), such as the US Medicare Minimum Data Set (MDS 3.0)( 4 ) and InterRAI,( 5 ) to standardise data collection and collation. The COVID-19 pandemic exposed the lack of joined-up data about care home residents, providing impetus to address data gaps.( 6 ) Until recently, most care homes used paper records but there has been a shift towards digital approaches and the development of Digital Care Records (DCRs) software.( 7 ) This digitalisation has been accelerated in England by central government targets and resource to enable care home DCRs to feed into national digital social care records.( 8 ) Data collected within DCRs on routine care, health status and sociodemographic information could enable better understanding of residents’ needs and hold the key to understanding population health and wellbeing in care homes.( 9 ) Reusing these routine data for research could also reduce burden on residents and staff and offer an opportunity to use data for a shared purpose with greater understanding of the context of data collection.( 10 ) As part of the DACHA study (Developing research resources and minimum data set for care homes adoption and use), we set out to develop and test an MDS for English care homes.( 11 ) This involved a programme of work to identify variables for inclusion through: reviewing the international literature;( 12 ) describing measures used in UK care home trials;( 13 ) surveying current care home data collection;( 1 ) a realist review on MDS implementation;( 14 ) consulting key stakeholders;( 15 ) and engaging care home residents.( 16 ) We aimed to link routinely collected administrative health data collected by NHS England with data from statutory social care providers to care home DCRs with a small number of additional structured measures related to resident needs and quality of life added to DCR software. Thus, minimising data collection burden to complete the MDS.( 17 ) This study was undertaken during a period of significant changes within the care home sector, responding to challenges of the COVID-19 pandemic including high staff turnover and vacancies across care services, resulting in unmet need.( 18 ) However, this has also provided the impetus to recognise the need to invest and grow research capacity from within social care, through more participatory approaches.( 19 ) We have described elsewhere the work to access and link data and a description of the feasibility and completeness of the pilot MDS.( 17 ) This paper explores care home staff opinions and experiences of collecting structured measures of residents’ quality of life, cognition and function to contribute to an MDS. It also explores the ways in which care home staff and commissioners of services for care homes felt MDS data could be used. Methods Reporting of this research has been informed by the Consolidated Criteria for Reporting Qualitative Research checklist (COREQ).( 20 ) It is part of a wider mixed-methods study.( 11 ) Setting Care homes in England provide 24-hour care and support for adults with complex needs, encompassing services with and without on-site registered nurses. They form a critical part of the social care system, which includes statutory and privately funded care across communities. For this study, older adult care homes using software from one of two DCR providers, in three geographically and demographically diverse regions of England, each representing an Integrated Care System (ICS), were invited to participate. England has 42 ICSs, health and care partnerships including NHS, local authorities, voluntary sector, and social care providers, responsible for planning, commissioning, and delivering coordinated services.( 21 ) Pilot MDS Most variables in the MDS used data routinely collected by care home staff and were directly extracted from the DCR (e.g. resident characteristics, care needs). Additional measures not previously available in DCRs and added to the pilot MDS assessed cognition, functioning and quality of life (QoL) (Table 1 ). Their addition addressed gaps identified following mapping of existing data items in DCRs against an aspirational MDS to address prevailing concerns of care home stakeholders.( 11 , 22 ) Researchers introduced care home staff to the additional measures, provided support in locating them within the software and how, practically, to complete them. Care home staff were asked to complete these additional measures twice during the study. Table 1 Summary of additional measures added to Digital Care Records for care home staff completion Measurement domain Tool including reference Capability wellbeing Investigating Choice Experiments for the Preferences of Older People (ICEPOP) CAPability instrument (ICECAP-O)( 43 , 44 ) Cognitive impairment MDS Cognitive Performance Scale( 45 ) Delirium Informant Assessment of Geriatric Delirium Scale (I-AGeD)( 46 ) Dementia-specific Quality of Life QUALIDEM( 47 ) Functional independence Barthel Index( 48 ) Healthcare Related Quality of Life EuroQol 5 domain 5 level proxy version (EQ-5D-5L Proxy 2)( 49 ) Social care Related Quality of Life Adult Social Care Outcomes Tool Proxy (ASCOT-Proxy)( 50 , 51 ) Adult Social Care Outcomes Tool (ASCOT): Anxiety and Low Mood subscale( 52 ) Adult Social Care Outcomes Tool (ASCOT): Pain item( 52 ) Adult Social Care Survey in England (Question 2a)( 53 ) Research team and reflexivity Data collection was undertaken by two female researchers experienced in facilitating interviews and focus groups (REC and SERP). REC is a postdoctoral clinical academic with a background in mental health nursing. SERP is a social care researcher with a background in psychology. Data analysis was led by NS, REC and SERP. NS is a male social care researcher from a social policy and sociology background. Analysis was supported by ALG, AMT, JKB and CG, academics working with care homes. All participants were informed of the purpose of focus groups/interviews and provided informed consent. Some care home staff participants were known to the interviewers in a professional context through involvement in the study. ICS participants were not known to interviewers. Study design Focus groups and semi-structured interviews were conducted online with care home staff (Waves One [W1] and Two [W2] in June and October 2023 respectively) and with ICS participants (W2 only) to explore MDS data collection and use. Participant selection A purposive sampling approach was used to ensure care home staff participants had used the pilot MDS (i.e. the DCR and additional measures). Participants were approached by email sent from a researcher, with one reminder email. Integrated Care System participants were recruited based on their work with care homes and social care data and invited via professional connections made during study set up.( 17 ) Data collection Data collection was informed by the Consolidated Framework for Implementation Research (CFIR),( 23 ) focussing on experience of implementing the MDS. Topic guides for each wave were developed, and content adapted after piloting and discussion between researchers ( Supplementary materials ). W1 focus groups discussed participants’ views of the MDS, participation in the study and their experiences completing the additional measures. For W2 senior care home staff (managers or their representatives) and ICS participants were separately presented with an example MDS output to facilitate discussion around how this could support care delivery ( Supplementary materials ). All focus groups were audio recorded and transcribed. Focus groups lasted 43–90 minutes (average duration 70 minutes) and individual interviews 40–90 minutes (average duration 60 minutes). Only researchers and participants were present during focus groups. While the focus groups conducted in this study met all of Krueger’s criteria for a focus group,( 24 ) interaction between participants was, at times, closer to what might be more accurately characterised as a group interview.( 25 ) This was particularly the case in the care home representatives’ groups. While there was some interaction and discussion between care home representatives, most of the interaction in the groups occurred between the care home participants and the focus group facilitator. In contrast, the ICS groups were characterised by much stronger levels of interaction between the ICS participants. Despite this, in the text we refer to all the groups as focus groups. Theoretical framework and analysis Reflexive thematic analysis was undertaken using the six stages described by Braun and Clarke.( 26 ) This approach was chosen for its flexibility, particularly in moving between inductive and deductive coding and theme development. The analysis adopted an experiential orientation to understanding the data, with a focus on the experiences and perspectives of care home staff and ICS participants. Familiarisation Verbatim transcripts were checked by the interviewer/focus group facilitator and uploaded to NVivo (version R1). Thereafter, researchers familiarised themselves through multiple re-reading. Each transcript was reviewed by at least two of three researchers conducting the analysis (REC, SERP, and NS). Coding Discussion following this initial familiarisation among the project team, led to the adoption of a deductive coding framework drawn from implementation science; the CFIR.( 23 ) This initial coding, utilised a semantic coding approach.( 27 ) The coders (RC, SERP, NS) met regularly, including discussing differences in coding and interpretation of any doubled coded transcripts. These sessions focused not on trying to find consensus and a single meaning, but rather to explore the range of different meanings to achieve a richer understanding of the data together. Generating initial themes The first attempt at moving from codes to themes continued the deductive approach and adherence to the CFIR framework, at this stage using CFIR domains to inform the themes. However, these were felt to be too restrictive to capture the rich experiences shared, thus a decision was made to take a more inductive approach to developing themes from the coding. This identified and mapped recurring ideas, and patterns of experiences that could be tested in other accounts and drawn out as themes. Developing and reviewing themes Development and revision of the inductive themes involved a wider set of researchers (REC, SERP, NS, ALG, JKB, AMT & CG) who increasingly adopted a more interpretive and latent approach to the data. The team discussed, reflected on, and revised the themes multiple times. Refining, defining and naming themes Proposed themes were shared within the team and naming was revised to ensure shared meaning, clarity of the relationship between and boundaries of themes. To highlight the non-linear nature of the analytical process, some of these revisions were followed by not only initial attempts at, defining and naming the themes, but also attempts to produce a draft reporting of the findings. Writing-up This was led by two researchers (REC and NS) with discussion and revisions from others (JKB, ALG, CG, and AMT). The final iterations were reviewed by the entire study team and revised in response to comments received. Results From 45 homes recruited to the DACHA study,( 17 ) twenty-seven care homes (60%) were represented in focus groups, of which ten homes were represented in both waves. Twenty-four staff representing 22 homes participated in five W1 focus groups ( Table 2 ) . Groups included between two and nine participants, grouped according to care home type (e.g. single/multiple care home providers) or staff role. Sixteen senior staff representing 15 homes participated in four W2 focus groups ( Table 2 ) . Groups included between two and six participants. A further 25 interested individuals (13 and 12 from W1 and W2 respectively) cancelled due to unforeseen commitments within their care home. Table 2 Summary of care home staff participant characteristics per wave Wave 1 Five focus groups 24 participants Wave 2 Four focus groups 16 participants Number of participants (%) Number of participants (%) Sex Female Male 22 (91.7) 2 (8.3) 16 (100.0) 0 Age group 21–30 years 31–40 years 41–50 years 51–60 years 60 years and over 2 (8.3) 10 (41.7) 6 (25.0) 3 (12.5) 3 (12.5) 2 (12.5) 8 (50.0) 3 (18.8) 3 (18.8) 0 Ethnicity White ethnic group Asian/Asian British Black/Black British Other ethnic group 15 (62.5) 7 (29.2) 0 2 (8.3) 12 (75.0) 1 (6.3) 1 (6.3) 2 (12.5) Years in workplace Mean [Standard Deviation] 3.7 [3.5] 3.7 [5.8] Job title Care home manager/director Deputy manager Registered nurse Activities co-ordinator Administrator Senior care assistant Team lead Clinical service manager 13 (54.2) 4 (16.7) 3 (12.5) 1 (4.2) 2 (8.3) 1 (4.2) 0 0 9 (56.3) 4 (25.0) 0 1 (6.3) 0 0 1 (6.3) 1 (6.3) Ten ICS participants from two of the three study regions participated in three individual interviews and one focus group. While many managers volunteered their homes’ involvement, in larger chains, participation could be determined by senior staff working remotely from the home, which may have influenced within home engagement in data collection. Some managers, new to post, inherited a decision to participate from a predecessor. In these situations, researchers provided additional support to explain and promote the study and stress participation was an individual’s choice. The additional measures added to the DCR were not routinely collected and represented new work for care home staff to input. Experience of completing the additional measures ranged from the home manager completing them for all residents, to named staff members being allocated the task, taking account of concerns including workload, consistency of approach and accuracy. The presentation of an example MDS output to ICS participant interviews and focus group enabled active engagement, interpretation and reflection and peer-peer interaction within the focus groups that went beyond ICS participants’ experience, predominantly, of working with care homes to resolve concerns or difficulties in care provision. Three main themes were developed from the data concerning professional perspectives on implementation and use of data from the pilot MDS: care home context and the importance of an MDS for care; appropriateness and relevance of QoL measures to resident care; and MDS data quality and purpose of data collection (see Fig. 1 ) . Care home context and the importance of an MDS for care Care home staff operated against a backdrop of workforce pressures and rapid post pandemic change towards digitalisation and reporting. Care homes from one chain had introduced new DCR Software in the year leading up to the research project. Comments to the research team suggested that for some staff completing the MDS was affected by how familiar they were using DCR. Staff turnover during the study period influenced uptake, for example, when managers and/or staff members co-ordinating study involvement in some of the homes changed. This affected how the MDS was prioritised. The most marked example was that a large corporate chain of care homes withdrew from the study because of a change in ownership and changes in how their DCR software was implemented. Elsewhere, completion was influenced by the equipment, digital literacy, and the culture of how residents’ needs were documented for example, if DCRs were the basis for staff handovers and discussion of residents’ needs. This staff member from the outset could anticipate how the MDS would be incorporated into the routine of the care home: … I think if it was to be rolled out, it would just get included in the monthly review of the care plans. It wouldn't be our nurses saying, well, I'm not doing that bit, it would actually form part of the monthly or the review of the care plan (Deputy Manager 4, W1 Focus Group) Unsurprisingly, staff accounts reflected an overlay between the experience of implementing the care home part of the MDS, and the experience of being involved in a research study. There was willingness to support the research, but without mandate or additional resources for staff time, even with researcher support, managers had to prioritise front line care. These, to an extent, reflect the wider experience of conducting research in care homes, but also reflect the challenges that would accompany MDS implementation in real life. For those who did persevere and became familiar with the format the inputting required was considered to be simple. It was an artefact of the study timeline that to ensure comparable and meaningful data were extracted for all participating residents, homes needed to collect, collate, and enter additional measures within a month. One participant noted that if collecting these measures became routine, completion could be spread out and more manageable. It was just the fact that we were getting so much information in a short space of time. If it was somebody moving into the home, you'd be doing that set of questions with them and then reviewing it every month on more of a one-to-one basis. Rather than it being like right, I need all 30 people to answer these questions now (Manager 18, W2 Focus Group) If data capture became routine, and data were entered contemporaneously, then care home staff saw the possibility that data could inform resident care planning forming a positive-feedback loop. Staff would be motivated by the available data and the ways in which it had helped them to deliver and improve care. This, in turn, would lead staff to emphasise the importance of data entry as part of their wider routine. However, this was threatened by the specification and availability of digital and handheld devices and the accessibility of residents’ data. Some of the additional measures were too detailed for a small screen and required a desktop computer. Desktops, meanwhile, were limited in number, sometimes in places away from direct care and could be used by multiple staff for different competing activities. The ability to access information and data when needed during care delivery was suggested as a likely reinforcer of completion if an MDS became routine – but only if these issues of data accessibility and device availability were addressed: Hopefully, by having easier access to information and quicker access, rather than having to kind of ring round the houses to find out information that hopefully would, you know, you could just log on to a system and see there. (Manager 5, W1 Focus Group) There were wider concerns about how the sector could address worries about knowledge, skills, and confidence of care home staff, ensuring staff were equipped to administer the care home element of the MDS. Training was seen as one way to address this: A bit more teaching of how to use the information, how to extract the information.....And then hopefully getting them to understand it's not a foreign concept and yes, it can be adopted, or adapted in care homes I should say. (Manager 18, W2 Focus Group) The number of residents lacking mental capacity placed pressure on how resident data were collected and who was accountable. Managers and staff felt responsible for making decisions in residents’ best interests and ensuring 'the right people' were involved. This seemed to be a particular concern regarding QoL measures with staff acting as a resident proxy. There were two issues: whether these fitted with their understanding of how to represent the resident; and staff confidence completing new measures. In some cases, this related to the quantitative nature of the data. Thinking ahead, this manager could see staff would need support as part of phased implementation: You know, some of the decisions we’re inputting, it has to be clear we’re inputting as a best interest rather than the individual.....So it is more of our views, the relative view, and it's really, unless they have a full mental capacity that it's quite difficult to capture that. (Manager 8, W1 Focus Group) So, I think everyone at the start will be nervous about it …. anytime I throw numbers, even if they have to do observations, they’re like oh, oh I'm not sure. So, you would have to really take small steps introducing it. (Manager 18, W2 Focus Group) Appropriateness and relevance of QoL measures to resident care Care home staff highlighted that QoL measure content directly affected their completion and use, especially the perceived appropriateness of some QoL items, whether they felt it possible to quantify QoL, and whether and how staff should or could address the domains included. Though the pilot did not recruit residents considered to be at the end-of-life, concerns about the appropriateness of asking older or unwell residents about their QoL were shared. This raised an important issue around which measures are collected and when, given the short time that many people spend living in care homes. Whether carers felt they could or should respond to QoL domains influenced staff engagement with the MDS. One participant was uncomfortable about the ICECAP-O item on love and friendship and its measurability. Appropriateness was challenged, whilst they accepted, they were responsible for enjoyment (another ICECAP-O item), they questioned if ensuring love should be care homes’ responsibility: The group of people we look after are of a very old age with a lot of end-of-life care here and sometimes it can feel a bit inappropriate to ask these questions as well, like how do you feel? Well, how do you want me to feel, I'm dying [laugh]. (Manager 6, W1 Focus Group) I found it's quite hard to measure love. That might just be how someone feels and that, affected by whether they've got family, whether they've got a good relationship with their family and things like that. Enjoyment sort of feels like it's more our responsibility, if that makes sense. ( Manager 17, W2 Focus Group) ICS participants highlighted wider influences when interpreting data on QoL of residents which need to be considered. They recognised the value of reframing care to focus on the person, their individual needs and perspectives, bringing in concepts of person- and relationship-centred care. For example, enabling homes to evidence the rationale for care plans that reinforced positive risk taking and acknowledging what they can and cannot influence such as how someone feels about being in a care home. Care home staff reflected how some questions, such as the ICECAP-O item ‘thinking about the future’, could trigger different ways of discussing care by prompting conversations about the future not solely about preferences and priorities for end of life. It encouraged staff to consider what could be done to improve QoL for residents in the present: that person’s dignity, their control over their life, safety, it [the QoL measure] all presumes that that comes from the care home. But actually, we [ICS commissioners] know that there are multiple factors that impact on a person's safety and risk taking…....we've got to see people as that holistic being, with multiple factors impacting on them. (ICS participant 3, Focus Group) If I'm honest in terms of a care home, future planning and future preparing, all we do is look at what people's wishes are at the end of their life......There's not as much that we do in terms of well actually, what do you want to do.....So yeah, shines a bit of a light on how we can look at that differently . ( Manager 17, W2 Focus Group ) Believing data could impact on residents QoL was seen as key facilitator towards completion – triangulating with the point made earlier about positive feedback loops inspiring data completion. This was also the case where data informed care home teams ideas about what they were good at, and where further training and staff development were needed. .... maybe if it’s something you had on a monthly basis, you'd be able to then look ahead and say right, well, we've got this training planned, is there something that we need to add in because this has all of a sudden shot up? (Manager 7, W2 Focus Group) Several care home participants discussed how QoL measures fostered a wider view of care beyond medical or physical needs, or environment. Care home participants suggested that QoL measures, ASCOT-Proxy in particular, not only provided a more structured in-depth account of residents’ lives but could also facilitate person-centred approaches to care that enhanced their care work involving staff and providing opportunities for family and friends to contribute: ..... we can sit with them and discuss things with them that we wouldn't normally discuss with them. The care plans, on a whole are becoming so person centred it warms my heart. Our residents are getting much, much better looked after, and this is all because of the DACHA study.... It's changed the way I look at things, and I'm sure if CQC comes out we’ll be able to say to them, look, we've been involved in this study and we've noticed that this has improved our level of care, and the input from our residents and their families It would definitely contribute to the evidence that we would be providing to CQC to say what we do is outstanding. It's definitely what we would use. Because a lot in (Software name) as well, all the risk assessments and stuff that we already do on there are very, very clinical. It's all based on how someone, how your body works, that's what it is. And so....adding all of these additional things in, we're looking at people holistically, it’s so person centred, it's beautiful. (Manager 16 and Manager 17, W2 Focus Group) There was evidence that participating homes used the QoL data to inform changes in practice. Some participants were hopeful that continued use could positively impact residents’ lives. They recognised the process did not necessarily lead to “answers” but triggered important conversations. Part of this was that QoL data could present details about how residents regarded their lives, or day-to-day care, that care home staff found distressing, but that they also found it important to hear to deliver care that met residents’ needs. This is quite heart breaking for me in the setting that I work in, quite devastating. How do you feel about your future, when someone can't remember what day of the week it…..it's great that we are capturing what's important to people, but this was quite difficult. (Manager 4, W1 Focus Group) Balanced against these views was the sense, for some participants that quantitative summaries of QoL were reductive and driven more by measurement than care concerns. For participants who espoused these views, they couldn’t cite examples from their own care homes where QoL data had facilitated reflection or improvement. It is not clear the extent to which negative baseline views about QoL measures cultivated disengagement, or whether these staff had tried to work with the measures and found them of limited use in practice. MDS data quality and purpose of data collection Care home and ICS participants recognised the importance of data quality, as it would influence uptake and data use. Care staff are expected to deliver care and it is a role that carries much responsibility. Managers expressed concerns over the expectations being placed on a low-paid workforce: you want all that accurate data straight away. But I mean this with no disrespect to absolutely anybody, we employ an unskilled labour force that are being paid minimum wage, and yet we want the highest of standards in the most regulated industry that I know of. (Manager 11, W1 Focus Group) There was an extended discussion between ICS participants that they needed to be more trusting, recognising that their opinions were often prejudiced by having to focus on the (minority) of care homes who were not performing well. This related to two areas of data collection, reporting on residents’ unmet need and the use of proxy assessments. For some ICS participants, what emerged was a belief that care homes and their staff were likely to be biased in their reporting. They wondered if care home staff might feel exposed by highlighting unmet needs and be tempted to frame data entry in a way that portrayed care in the home in a positive light. This was based largely upon supposition and no respondents gave examples where care homes had done this in the past. ... it's going to reflect on the overall care of the care home. So, part of me would be questioning the validity of the data from the care staff who've completed it. You're not going to want to say that they've got safety unmet needs in a care home necessarily. ( ICS participant 1, Interview ) The ICS focus groups also expressed concerns about using proxies to understand QoL, with a preference for measures based on resident self-report QoL, exposing a lack of understanding about care home residents’ capacity to complete such measures. Balanced against this was a recognition that data about care home residents’ lives, experiences and QoL are scarce. Proxy data are better than the current inability to meaningfully describe these: It’s not like we're not trusting them or not that we think that they're fudging the data or the results. I just don't understand how you can make that analysis of somebody else's quality of life.....Even if you ask my partner, my family, what they would say, and the answers they would give would be different to what I would give. (ICS participant 8, Focus Group) QoL metrics....are something that are lacking within datasets, not just in care homes, I think generally across data that we collect. So, I think this is very welcome. (ICS participant 9, Interview) Care home staff shared this sense that proxies somehow fell short of the aspiration of individualised person-centered care. There were examples of staff despite being asked to complete QoL measures in a resident-proxy format, describing how they would engage in additional conversations with residents to try and validate their interpretation of the measures. Despite ICS participants’ concerns around data accuracy, they were able to propose ways data could add value to care. An example around aggregating resident level data to describe the health of the local care home population, and how they used hospitals services over time, illustrated how an MDS could support wider ICS work on population health, resource use and trends. Both care home and ICS participants understood that an MDS has different purposes for different people. For care home representatives, a secondary use of the data could be to evidence their interactions with other parts of the health and social care system. For example, data from the MDS could demonstrate a care home requires more support from visiting health services. These two quotes from an ICS and care home staff participant respectively, demonstrate how aggregate data could inform service review: I think most ICSs are doing, is looking at population health management. So, this isn't about necessarily tackling individual residents and the issues that they face, but it's looking at care homes. And actually, are there clusters of care homes, and a lot of them are provided by the same provider for instance, or in the same patch, or they have the same GP linked to them, for instance. (ICS participant 9, Interview) ... that could be a possibility, to start the conversation with your local authority, CCG to actually identify that there is a lack here, the GP is not supporting.....We can have a conversation and evidence to say that this is the problem comparatively. You know, our home is not receiving the sufficient support, so is there anything that you can actually bring us, give us, something along those lines, yeah. (Manager 9, W2 Focus Group) Both care home and ICS participants said that care homes would want to use data to show regulators how well they supported residents, supporting the case their home provided outstanding care: It's really hard to say what you do and how you do it and be able to prove that. ... I'm thinking for the homes and the workforce in that home, to be able to go and say actually we do a really good job. Our score reflects that we are good at what we do. (ICS participant 5, Focus Group) Using data outside of care homes to create national and local averages would, according to ICS participants, enable benchmarking against other providers. It was hoped this could stimulate “a bit of healthy competition” (ICS participant 9, Interview) and improve performance across the sector. Other ICS participants suggested that QoL could be seen as a marker of care quality and used by the public to value care homes. If [MDS data] went to the public domain......to say that they've got a two [for] QoL or whatever. Then actually, I'd look at CQC rating and it’d be good to have that as well.....So, I think we do compare at the minute just on that ratings and I think it would be good to understand, to have a QoL [score] would be great for all of us. (ICS participant 3, Focus Group) There was discussion of using MDS data to sanction or motivate care homes. The data were attractive to ICSs who were considering how to support quality in their regions. A focus on quality improvement, however, was defined more negatively as “scrutiny” by another ICS participant ( ICS participant 4, Focus Group ) demonstrating how underlying beliefs and assumptions about the role of ICS when working with care homes could affect how MDS findings are perceived. There were contrasting views about if the data should be widely available. Using data to make judgements without understanding the context of care or the variation of provision was a recurring concern for some care home participants: I think if it's freely available, I think that's not really good. I think if you're able to take different aspects of it to use to promote or develop your care and things, that's fine. But not for all and sundry to have full access to everything, because it's judgments again, isn't it? It's making those judgments on the different areas, different homes. (Manager 15, W2 Focus Group) Discussion Data collection in care homes is often represented as administrative work, externally imposed, distracting from core caring responsibilities. Participants’ accounts in this study provided evidence of circumstances supporting culture shift to one where resident data informs day-to-day care. A systematic approach to collecting data on residents’ characteristics and QoL could increase staff awareness and directly inform care planning and delivery. For those care homes who persevered with data capture they identified benefits for individual residents and increased job satisfaction in being able to link care work to how it was documented and discussed. The process of data capture was valued when it enabled identifying residents’ preferences and priorities, evidencing the care staff deliver and identifying areas for improvement. We found that meaningful change required senior staff involvement, a level of organisational readiness, shared confidence in validity of the data, and a belief that new systems aligned with existing organisational values. Data use beyond the care home required trust in data capture and interpretation which is aware of the diversity of care home residents, their capacity to articulate their needs and the circumstances of the homes which support them. While there is a potential value in comparing services and enabling benchmarking, there is a need for data to be adjusted to account for differences in the resident population which may impact findings.( 28 ) The implementation process relied on staff interest and encouragement from researchers and evidence of direct benefit to the resident and staff supporting them. Despite this, some homes stopped collecting data. Sustaining consistent data capture and use requires assessment of staff availability, engagement, and IT resources. Ongoing training needs to reinforce the importance of different data categories, underpinned by opportunities to discuss the evidence within and beyond the care home. These findings are consistent with prior work implementing innovation in care homes,( 29 , 30 ) where health and social care organisations and their staff have established ways of working together based on trust and parity of esteem.( 31 – 33 ) The discussions about who completes, uses and shares MDS information, underline the need to pay more attention to systems of working within care homes and invest in activities that foster a sense of shared responsibility within care homes and with external partners. The narrative of digitalisation and integration needs to be explicit about the work required to achieve this. Our review of MDS implementation internationally found mandates and incentives were key, complemented by bottom-up and top-down approaches for effective implementation.( 14 ) Recent experiences of policy mandates and incentivised care home data capture during the COVID-19 pandemic (the Capacity Tracker) suggest that this alone does not guarantee data completeness or quality.( 29 , 34 ) Incremental, reflective approaches, involving senior care home staff as implementation leaders, focussing on continuity and collaboration are also needed.( 35 , 36 ) To reduce workload and duplication of effort, all stakeholders must be confident that the MDS is sufficient to address their information needs, with additions collectively negotiated and agreed. The researchers did not impose a specific approach with care home staff to complete additional measures. Instead, the study made these available to staff, provided support with practical issues, then observed and reflected on how staff collected and used the data. The experiences shared provide evidence of the potential value added by the data to influence resident care, enhance staff interactions and increase job satisfaction. Some staff found it difficult to explore topics where residents reflected negatively on their own QoL or overtly acknowledged their own limited life expectancy, within our data and our public engagement involving residents.( 16 ) These discussions are important given the vulnerabilities and reality for many people living in care homes in mortality risk.( 37 ) Other measures of personal outcomes have been developed but so far not tested more widely in care home settings.( 38 ) Staff engagement in QoL measures as part of an MDS could be an important way to surface residents’ views using them to inform and personalise their care, enhancing relationships, known to enhance care quality.( 39 ) To enable participation and systematic evaluation of QoL among the care home population, there is a need to use proxy measures.( 22 , 40 ) Despite evidence of validity this was not universally accepted by data users. Education and support is required around this, appreciating proxy measures are not intended as equivalent to those from individuals, but a valid way to offer insight into the QoL of those who would otherwise be excluded.( 41 , 42 ) Reflecting on the data overall, we make recommendations to inform MDS implementation in Table 3 and have identified six research questions to inform a national roll-out in Table 4 . Table 3 Recommendations on measures to support care home MDS implementation • Planned data collection periods that reflect care home priorities and routines • Resource to support additional data gathering • Training to support staff familiarisation, confidence and adoption of new measures • Adequate IT facilities and fit between the hardware and software to enable the completion of simple and more complex assessments close to the older person • Ability for data to influence residents’ care planning • Care home leadership engaged with data capture and supports the embedding of practices that enable review and discussion of MDS • Care home staff, commissioners and visiting professionals develop ways of working that reference MDS findings • Resources and policy briefings that promote a shared understanding of QoL outcome measures. Specifically, how they can inform practice, commissioning and evaluation, recognising when differences in residents’ profiles are due to factors outside of the care homes' control. Table 4 Questions arising from findings requiring further exploration before widespread implementation 1. How do staff respond, in terms of their feelings and care actions, following structured evaluation of a residents’ quality of life? 2. What support do staff need after hearing difficult responses around quality of life among the residents they care for? 3. What is the optimal timing and frequency of MDS data collection, focusing on the perspective of influencing direct care? 4. How can software providers best integrate new measures into their products to make quality of life information accessible to frontline care staff and other data users (e.g. accessing current/previous assessments, longitudinal data and trends at a resident and care home level)? 5. What information and training do stakeholders need to facilitate their interpretation and use of MDS data collected about the care homes they support? 6. How will longitudinal data be interpreted and used if quality of life becomes routinely evaluated in UK care homes? A key strength of the work is drawing on care home staff experience of collecting resident data on QoL, cognition and function to add to the MDS and using the data these generated in their practice. In addition, using pilot MDS data to facilitate discussion with ICS participants and care home staff enabled exploration of potential data use. This facilitated authentic testimony based upon lived experience. Discussions were further focussed onto areas relevant to implementation by using CFIR as an organising principle, with a shift to more inductive analysis to capture the richness of individual experiences. We acknowledge the potential selection bias associated with including those who completed the additional measures in our sample and not those who did not. There are questions around homes’ representativeness in terms of their capacity to take on additional work and we acknowledge that the enthusiasm of staff for the additional measures is likely to have contributed to participation. Our care home participants were predominantly senior staff, as they took the lead on data completion, thus the perspectives of care staff are under-represented within the workforce. Finally, we recognise care homes were at different stages in terms of familiarity with DCR software and the study then altered this content. This represents a change from usual activity, but then so would de novo implementation of an MDS in real-world settings. Conclusions Our data show it is feasible for care home staff to complete structured measures assessing residents QoL, function and cognition to contribute to a pilot MDS using existing DCR software. The data generated by their assessments can be used to inform and influence residents’ care to enhance existing practice. Successful implementation requires a cultural shift such that measures are perceived as appropriate and relevant to direct care with resources to sustain their use. This should be recognised by policymakers and practitioners as an evolving process that requires senior support, and investment in activities that build trust and confidence of those collecting and interpreting data, mindful of the context in which they were collected. Abbreviations CFIR Consolidated Framework for Implementation Research COVID 19 –Coronavirus disease caused by SARS–CoV–2 virus DACHA Developing research resources And minimum data set for Care Homes Adoption and use DCR Digital Care Record FG Focus Group ICS Integrated Care System MDS Minimum Data Set NHS National Health Service QoL Quality of Life UK United Kingdom Declarations Ethics approval and consent to participate: The study received ethical approval from the London Queen’s Square Research Ethics Committee (22/LO/0250). All participants provided individual informed consent to participate. Consent for publication: Not applicable Availability of data and materials: The data generated and analysed during the current study are not publicly available due to the ethical approvals secured for the study but are available from the corresponding author on reasonable request in de-identified form. Competing interests: The authors declare that they have no competing interests Funding: This study is funded by the National Institute for Health and Care Research (NIHR) [HS&DR 127234/Health Service Delivery Research programme] and supported by NIHR ARC East of England. Several authors are supported by the NIHR Applied Research Collaborations in East Midlands (ALG), Kent, Surrey and Sussex (AMT); North East and North Cumbria (BH); Yorkshire and Humber (KS) and East of England (AK, CG). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care. Authors’ contributions: The study was designed by REC, SERP, ALG, AMT and SER. Data were collected by REC and SERP. Data analysis and writing were led by REC, NS, SERP, ALG, AMT, JKB and CG. SER, FT, AK, LW, BH, KS, GA, KDC & JM were involved in substantially revising the initial draft and all authors have approved the submitted version. Acknowledgements: With thanks to all DACHA study participants – people living in care homes and the care home staff supporting them – without whom it would not have been possible to pilot the MDS. We are grateful to those who care home staff and ICS participants who gave up their time to participate in this part of the study. Recruitment to the study was supported by the Clinical Research Network Research Delivery Teams in Kent, Surrey and Sussex and the Direct Delivery Team LCRN North East and North Cumbria Partner Organisation. The authors would also like to thank Louise Jones, Research Nurse, Northumbria Healthcare NHS Trust for her support with the study. References Hanratty B, Wolters AT, Towers AM, Spilsbury K, Meyer J, Killett A et al. Data Collection in Care Homes for Older Adults: A National Survey in England. Journal of Long-Term Care. 2023:288 – 96. Shenkin SD, Johnston L, Hockley J, Henderson DAG. 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Towers A-M, Smith N, Allan S, Vadean F, Collins G, Rand S, et al. Care home residents’ quality of life and its association with CQC ratings and workforce issues: the MiCareHQ mixed-methods study. Health Serv Delivery Res. 2021;9:19. NHS England. Adult Social Care User Survey (ASCS). 2023-24 guidance and materials for councils 2023 [cited 2024 2nd May]. https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/social-care-user-surveys/adult-social-care-user-survey-ascs-2023-24 . Additional Declarations No competing interests reported. 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15:09:31","extension":"jpg","order_by":1,"title":"Figure 1","display":"","copyAsset":false,"role":"figure","size":864301,"visible":true,"origin":"","legend":"\u003cp\u003e\u003cstrong\u003eSummary overview of study themes set in wider context of practice\u003c/strong\u003e\u003c/p\u003e\n\u003cp\u003eFootnotes\u003c/p\u003e\n\u003cp\u003eMDS – minimum data set; QoL – quality of life\u003c/p\u003e","description":"","filename":"Themes09062024.jpg","url":"https://assets-eu.researchsquare.com/files/rs-4564243/v1/f3f51aa486153767568e164c.jpg"},{"id":58673515,"identity":"2f7f28d3-9129-4a48-9d26-bb4a9e7aecba","added_by":"auto","created_at":"2024-06-19 15:17:32","extension":"pdf","order_by":0,"title":"","display":"","copyAsset":false,"role":"manuscript-pdf","size":1635342,"visible":true,"origin":"","legend":"","description":"","filename":"manuscript.pdf","url":"https://assets-eu.researchsquare.com/files/rs-4564243/v1/654ff5a8-44e9-4860-8dea-579989312abc.pdf"},{"id":58672583,"identity":"46d7660f-88f2-4e51-a29d-675790142f09","added_by":"auto","created_at":"2024-06-19 15:09:31","extension":"docx","order_by":1,"title":"","display":"","copyAsset":false,"role":"supplement","size":29076,"visible":true,"origin":"","legend":"","description":"","filename":"SupplementaryMaterials.docx","url":"https://assets-eu.researchsquare.com/files/rs-4564243/v1/c5f18a940fe2e3741b09c804.docx"}],"financialInterests":"No competing interests reported.","formattedTitle":"Piloting a Minimum Data Set (MDS) in English care homes: a qualitative study of professional perspectives on implementation and data use","fulltext":[{"header":"Background","content":"\u003cp\u003eUK care home staff collect and collate substantial data about people living in the care home to support direct care delivery and to fulfil regulatory and contractual requirements.(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e, \u003cspan citationid=\"CR2\" class=\"CitationRef\"\u003e2\u003c/span\u003e) Additional data about care home residents are collected by primary, secondary and community health services, social care and social work. There is significant variation in how, whether, when, and with whom these data are collected and shared, making them difficult to operationalise at scale.(\u003cspan citationid=\"CR3\" class=\"CitationRef\"\u003e3\u003c/span\u003e) This contrasts with other jurisdictions which use minimum data sets (MDSs), such as the US Medicare Minimum Data Set (MDS 3.0)(\u003cspan citationid=\"CR4\" class=\"CitationRef\"\u003e4\u003c/span\u003e) and InterRAI,(\u003cspan citationid=\"CR5\" class=\"CitationRef\"\u003e5\u003c/span\u003e) to standardise data collection and collation.\u003c/p\u003e \u003cp\u003eThe COVID-19 pandemic exposed the lack of joined-up data about care home residents, providing impetus to address data gaps.(\u003cspan citationid=\"CR6\" class=\"CitationRef\"\u003e6\u003c/span\u003e) Until recently, most care homes used paper records but there has been a shift towards digital approaches and the development of Digital Care Records (DCRs) software.(\u003cspan citationid=\"CR7\" class=\"CitationRef\"\u003e7\u003c/span\u003e) This digitalisation has been accelerated in England by central government targets and resource to enable care home DCRs to feed into national digital social care records.(\u003cspan citationid=\"CR8\" class=\"CitationRef\"\u003e8\u003c/span\u003e) Data collected within DCRs on routine care, health status and sociodemographic information could enable better understanding of residents\u0026rsquo; needs and hold the key to understanding population health and wellbeing in care homes.(\u003cspan citationid=\"CR9\" class=\"CitationRef\"\u003e9\u003c/span\u003e) Reusing these routine data for research could also reduce burden on residents and staff and offer an opportunity to use data for a shared purpose with greater understanding of the context of data collection.(\u003cspan citationid=\"CR10\" class=\"CitationRef\"\u003e10\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eAs part of the DACHA study (Developing research resources and minimum data set for care homes adoption and use), we set out to develop and test an MDS for English care homes.(\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e) This involved a programme of work to identify variables for inclusion through: reviewing the international literature;(\u003cspan citationid=\"CR12\" class=\"CitationRef\"\u003e12\u003c/span\u003e) describing measures used in UK care home trials;(\u003cspan citationid=\"CR13\" class=\"CitationRef\"\u003e13\u003c/span\u003e) surveying current care home data collection;(\u003cspan citationid=\"CR1\" class=\"CitationRef\"\u003e1\u003c/span\u003e) a realist review on MDS implementation;(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) consulting key stakeholders;(\u003cspan citationid=\"CR15\" class=\"CitationRef\"\u003e15\u003c/span\u003e) and engaging care home residents.(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) We aimed to link routinely collected administrative health data collected by NHS England with data from statutory social care providers to care home DCRs with a small number of additional structured measures related to resident needs and quality of life added to DCR software. Thus, minimising data collection burden to complete the MDS.(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eThis study was undertaken during a period of significant changes within the care home sector, responding to challenges of the COVID-19 pandemic including high staff turnover and vacancies across care services, resulting in unmet need.(\u003cspan citationid=\"CR18\" class=\"CitationRef\"\u003e18\u003c/span\u003e) However, this has also provided the impetus to recognise the need to invest and grow research capacity from within social care, through more participatory approaches.(\u003cspan citationid=\"CR19\" class=\"CitationRef\"\u003e19\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eWe have described elsewhere the work to access and link data and a description of the feasibility and completeness of the pilot MDS.(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) This paper explores care home staff opinions and experiences of collecting structured measures of residents\u0026rsquo; quality of life, cognition and function to contribute to an MDS. It also explores the ways in which care home staff and commissioners of services for care homes felt MDS data could be used.\u003c/p\u003e"},{"header":"Methods","content":"\u003cp\u003eReporting of this research has been informed by the Consolidated Criteria for Reporting Qualitative Research checklist (COREQ).(\u003cspan citationid=\"CR20\" class=\"CitationRef\"\u003e20\u003c/span\u003e) It is part of a wider mixed-methods study.(\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e)\u003c/p\u003e \u003cdiv id=\"Sec3\" class=\"Section2\"\u003e \u003ch2\u003eSetting\u003c/h2\u003e \u003cp\u003eCare homes in England provide 24-hour care and support for adults with complex needs, encompassing services with and without on-site registered nurses. They form a critical part of the social care system, which includes statutory and privately funded care across communities. For this study, older adult care homes using software from one of two DCR providers, in three geographically and demographically diverse regions of England, each representing an Integrated Care System (ICS), were invited to participate. England has 42 ICSs, health and care partnerships including NHS, local authorities, voluntary sector, and social care providers, responsible for planning, commissioning, and delivering coordinated services.(\u003cspan citationid=\"CR21\" class=\"CitationRef\"\u003e21\u003c/span\u003e)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec4\" class=\"Section2\"\u003e \u003ch2\u003ePilot MDS\u003c/h2\u003e \u003cp\u003eMost variables in the MDS used data routinely collected by care home staff and were directly extracted from the DCR (e.g. resident characteristics, care needs). Additional measures not previously available in DCRs and added to the pilot MDS assessed cognition, functioning and quality of life (QoL) (Table\u0026nbsp;\u003cspan refid=\"Tab1\" class=\"InternalRef\"\u003e1\u003c/span\u003e). Their addition addressed gaps identified following mapping of existing data items in DCRs against an aspirational MDS to address prevailing concerns of care home stakeholders.(\u003cspan citationid=\"CR11\" class=\"CitationRef\"\u003e11\u003c/span\u003e, \u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e) Researchers introduced care home staff to the additional measures, provided support in locating them within the software and how, practically, to complete them. Care home staff were asked to complete these additional measures twice during the study.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab1\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 1\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSummary of additional measures added to Digital Care Records for care home staff completion\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"2\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e \u003cp\u003eMeasurement domain\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eTool including reference\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCapability wellbeing\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInvestigating Choice Experiments for the Preferences of Older People (ICEPOP) CAPability instrument (ICECAP-O)(\u003cspan citationid=\"CR43\" class=\"CitationRef\"\u003e43\u003c/span\u003e, \u003cspan citationid=\"CR44\" class=\"CitationRef\"\u003e44\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eCognitive impairment\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eMDS Cognitive Performance Scale(\u003cspan citationid=\"CR45\" class=\"CitationRef\"\u003e45\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDelirium\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eInformant Assessment of Geriatric Delirium Scale\u003c/p\u003e \u003cp\u003e(I-AGeD)(\u003cspan citationid=\"CR46\" class=\"CitationRef\"\u003e46\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eDementia-specific Quality of Life\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eQUALIDEM(\u003cspan citationid=\"CR47\" class=\"CitationRef\"\u003e47\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eFunctional independence\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eBarthel Index(\u003cspan citationid=\"CR48\" class=\"CitationRef\"\u003e48\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eHealthcare Related Quality of Life\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eEuroQol 5 domain 5 level proxy version (EQ-5D-5L Proxy 2)(\u003cspan citationid=\"CR49\" class=\"CitationRef\"\u003e49\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003eSocial care Related Quality of Life\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003eAdult Social Care Outcomes Tool Proxy (ASCOT-Proxy)(\u003cspan citationid=\"CR50\" class=\"CitationRef\"\u003e50\u003c/span\u003e, \u003cspan citationid=\"CR51\" class=\"CitationRef\"\u003e51\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eAdult Social Care Outcomes Tool (ASCOT): Anxiety and Low Mood subscale(\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eAdult Social Care Outcomes Tool (ASCOT): Pain item(\u003cspan citationid=\"CR52\" class=\"CitationRef\"\u003e52\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eAdult Social Care Survey in England (Question 2a)(\u003cspan citationid=\"CR53\" class=\"CitationRef\"\u003e53\u003c/span\u003e)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec5\" class=\"Section2\"\u003e \u003ch2\u003eResearch team and reflexivity\u003c/h2\u003e \u003cp\u003eData collection was undertaken by two female researchers experienced in facilitating interviews and focus groups (REC and SERP). REC is a postdoctoral clinical academic with a background in mental health nursing. SERP is a social care researcher with a background in psychology.\u003c/p\u003e \u003cp\u003eData analysis was led by NS, REC and SERP. NS is a male social care researcher from a social policy and sociology background. Analysis was supported by ALG, AMT, JKB and CG, academics working with care homes.\u003c/p\u003e \u003cp\u003e All participants were informed of the purpose of focus groups/interviews and provided informed consent. Some care home staff participants were known to the interviewers in a professional context through involvement in the study. ICS participants were not known to interviewers.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec6\" class=\"Section2\"\u003e \u003ch2\u003eStudy design\u003c/h2\u003e \u003cp\u003eFocus groups and semi-structured interviews were conducted online with care home staff (Waves One [W1] and Two [W2] in June and October 2023 respectively) and with ICS participants (W2 only) to explore MDS data collection and use.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec7\" class=\"Section2\"\u003e \u003ch2\u003eParticipant selection\u003c/h2\u003e \u003cp\u003eA purposive sampling approach was used to ensure care home staff participants had used the pilot MDS (i.e. the DCR and additional measures).\u003c/p\u003e \u003cp\u003eParticipants were approached by email sent from a researcher, with one reminder email. Integrated Care System participants were recruited based on their work with care homes and social care data and invited \u003cem\u003evia\u003c/em\u003e professional connections made during study set up.(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e)\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec8\" class=\"Section2\"\u003e \u003ch2\u003eData collection\u003c/h2\u003e \u003cp\u003eData collection was informed by the Consolidated Framework for Implementation Research (CFIR),(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) focussing on experience of implementing the MDS. Topic guides for each wave were developed, and content adapted after piloting and discussion between researchers (\u003cb\u003eSupplementary materials\u003c/b\u003e).\u003c/p\u003e \u003cp\u003eW1 focus groups discussed participants\u0026rsquo; views of the MDS, participation in the study and their experiences completing the additional measures. For W2 senior care home staff (managers or their representatives) and ICS participants were separately presented with an example MDS output to facilitate discussion around how this could support care delivery (\u003cb\u003eSupplementary materials\u003c/b\u003e). All focus groups were audio recorded and transcribed. Focus groups lasted 43\u0026ndash;90 minutes (average duration 70 minutes) and individual interviews 40\u0026ndash;90 minutes (average duration 60 minutes). Only researchers and participants were present during focus groups.\u003c/p\u003e \u003cp\u003eWhile the focus groups conducted in this study met all of Krueger\u0026rsquo;s criteria for a focus group,(\u003cspan citationid=\"CR24\" class=\"CitationRef\"\u003e24\u003c/span\u003e) interaction between participants was, at times, closer to what might be more accurately characterised as a group interview.(\u003cspan citationid=\"CR25\" class=\"CitationRef\"\u003e25\u003c/span\u003e) This was particularly the case in the care home representatives\u0026rsquo; groups. While there was some interaction and discussion between care home representatives, most of the interaction in the groups occurred between the care home participants and the focus group facilitator. In contrast, the ICS groups were characterised by much stronger levels of interaction between the ICS participants. Despite this, in the text we refer to all the groups as focus groups.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec9\" class=\"Section2\"\u003e \u003ch2\u003eTheoretical framework and analysis\u003c/h2\u003e \u003cp\u003eReflexive thematic analysis was undertaken using the six stages described by Braun and Clarke.(\u003cspan citationid=\"CR26\" class=\"CitationRef\"\u003e26\u003c/span\u003e) This approach was chosen for its flexibility, particularly in moving between inductive and deductive coding and theme development. The analysis adopted an experiential orientation to understanding the data, with a focus on the experiences and perspectives of care home staff and ICS participants.\u003c/p\u003e \u003cp\u003e \u003cstrong\u003eFamiliarisation\u003c/strong\u003e \u003cp\u003eVerbatim transcripts were checked by the interviewer/focus group facilitator and uploaded to NVivo (version R1). Thereafter, researchers familiarised themselves through multiple re-reading. Each transcript was reviewed by at least two of three researchers conducting the analysis (REC, SERP, and NS).\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eCoding\u003c/strong\u003e \u003cp\u003eDiscussion following this initial familiarisation among the project team, led to the adoption of a deductive coding framework drawn from implementation science; the CFIR.(\u003cspan citationid=\"CR23\" class=\"CitationRef\"\u003e23\u003c/span\u003e) This initial coding, utilised a semantic coding approach.(\u003cspan citationid=\"CR27\" class=\"CitationRef\"\u003e27\u003c/span\u003e) The coders (RC, SERP, NS) met regularly, including discussing differences in coding and interpretation of any doubled coded transcripts. These sessions focused not on trying to find consensus and a single meaning, but rather to explore the range of different meanings to achieve a richer understanding of the data together.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eGenerating initial themes\u003c/strong\u003e \u003cp\u003eThe first attempt at moving from codes to themes continued the deductive approach and adherence to the CFIR framework, at this stage using CFIR domains to inform the themes. However, these were felt to be too restrictive to capture the rich experiences shared, thus a decision was made to take a more inductive approach to developing themes from the coding. This identified and mapped recurring ideas, and patterns of experiences that could be tested in other accounts and drawn out as themes.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eDeveloping and reviewing themes\u003c/strong\u003e \u003cp\u003eDevelopment and revision of the inductive themes involved a wider set of researchers (REC, SERP, NS, ALG, JKB, AMT \u0026amp; CG) who increasingly adopted a more interpretive and latent approach to the data. The team discussed, reflected on, and revised the themes multiple times.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eRefining, defining and naming themes\u003c/strong\u003e \u003cp\u003eProposed themes were shared within the team and naming was revised to ensure shared meaning, clarity of the relationship between and boundaries of themes. To highlight the non-linear nature of the analytical process, some of these revisions were followed by not only initial attempts at, defining and naming the themes, but also attempts to produce a draft reporting of the findings.\u003c/p\u003e \u003c/p\u003e \u003cp\u003e \u003cstrong\u003eWriting-up\u003c/strong\u003e \u003cp\u003eThis was led by two researchers (REC and NS) with discussion and revisions from others (JKB, ALG, CG, and AMT). The final iterations were reviewed by the entire study team and revised in response to comments received.\u003c/p\u003e \u003c/p\u003e \u003c/div\u003e"},{"header":"Results","content":"\u003cp\u003eFrom 45 homes recruited to the DACHA study,(\u003cspan citationid=\"CR17\" class=\"CitationRef\"\u003e17\u003c/span\u003e) twenty-seven care homes (60%) were represented in focus groups, of which ten homes were represented in both waves. Twenty-four staff representing 22 homes participated in five W1 focus groups \u003cb\u003e(\u003c/b\u003eTable\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e\u003cb\u003e)\u003c/b\u003e. Groups included between two and nine participants, grouped according to care home type (e.g. single/multiple care home providers) or staff role. Sixteen senior staff representing 15 homes participated in four W2 focus groups \u003cb\u003e(\u003c/b\u003eTable\u0026nbsp;\u003cspan refid=\"Tab2\" class=\"InternalRef\"\u003e2\u003c/span\u003e\u003cb\u003e)\u003c/b\u003e. Groups included between two and six participants. A further 25 interested individuals (13 and 12 from W1 and W2 respectively) cancelled due to unforeseen commitments within their care home.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab2\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 2\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eSummary of care home staff participant characteristics per wave\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"3\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c2\" colnum=\"2\"\u003e\u003c/div\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c3\" colnum=\"3\"\u003e\u003c/div\u003e \u003cthead\u003e \u003ctr\u003e \u003cth align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/th\u003e \u003cth align=\"left\" colname=\"c2\"\u003e \u003cp\u003eWave 1\u003c/p\u003e \u003cp\u003e\u003cem\u003eFive focus groups\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003e24 participants\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003cth align=\"left\" colname=\"c3\"\u003e \u003cp\u003eWave 2\u003c/p\u003e \u003cp\u003e\u003cem\u003eFour focus groups\u003c/em\u003e\u003c/p\u003e \u003cp\u003e\u003cem\u003e16 participants\u003c/em\u003e\u003c/p\u003e \u003c/th\u003e \u003c/tr\u003e \u003c/thead\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e\u0026nbsp;\u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e\u003cb\u003eNumber of participants\u003c/b\u003e (%)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e\u003cb\u003eNumber of participants\u003c/b\u003e (%)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eSex\u003c/b\u003e\u003c/p\u003e \u003cp\u003eFemale\u003c/p\u003e \u003cp\u003eMale\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e22 (91.7)\u003c/p\u003e \u003cp\u003e2 (8.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e16 (100.0)\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eAge group\u003c/b\u003e\u003c/p\u003e \u003cp\u003e21\u0026ndash;30 years\u003c/p\u003e \u003cp\u003e31\u0026ndash;40 years\u003c/p\u003e \u003cp\u003e41\u0026ndash;50 years\u003c/p\u003e \u003cp\u003e51\u0026ndash;60 years\u003c/p\u003e \u003cp\u003e60 years and over\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e2 (8.3)\u003c/p\u003e \u003cp\u003e10 (41.7)\u003c/p\u003e \u003cp\u003e6 (25.0)\u003c/p\u003e \u003cp\u003e3 (12.5)\u003c/p\u003e \u003cp\u003e3 (12.5)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e2 (12.5)\u003c/p\u003e \u003cp\u003e8 (50.0)\u003c/p\u003e \u003cp\u003e3 (18.8)\u003c/p\u003e \u003cp\u003e3 (18.8)\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eEthnicity\u003c/b\u003e\u003c/p\u003e \u003cp\u003eWhite ethnic group\u003c/p\u003e \u003cp\u003eAsian/Asian British\u003c/p\u003e \u003cp\u003eBlack/Black British\u003c/p\u003e \u003cp\u003eOther ethnic group\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e15 (62.5)\u003c/p\u003e \u003cp\u003e7 (29.2)\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003cp\u003e2 (8.3)\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e12 (75.0)\u003c/p\u003e \u003cp\u003e1 (6.3)\u003c/p\u003e \u003cp\u003e1 (6.3)\u003c/p\u003e \u003cp\u003e2 (12.5)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eYears in workplace\u003c/b\u003e\u003c/p\u003e \u003cp\u003eMean [Standard Deviation]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e3.7 [3.5]\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e3.7 [5.8]\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u003cb\u003eJob title\u003c/b\u003e\u003c/p\u003e \u003cp\u003eCare home manager/director\u003c/p\u003e \u003cp\u003eDeputy manager\u003c/p\u003e \u003cp\u003eRegistered nurse\u003c/p\u003e \u003cp\u003eActivities co-ordinator\u003c/p\u003e \u003cp\u003eAdministrator\u003c/p\u003e \u003cp\u003eSenior care assistant\u003c/p\u003e \u003cp\u003eTeam lead\u003c/p\u003e \u003cp\u003eClinical service manager\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c2\"\u003e \u003cp\u003e13 (54.2)\u003c/p\u003e \u003cp\u003e4 (16.7)\u003c/p\u003e \u003cp\u003e3 (12.5)\u003c/p\u003e \u003cp\u003e1 (4.2)\u003c/p\u003e \u003cp\u003e2 (8.3)\u003c/p\u003e \u003cp\u003e1 (4.2)\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003c/td\u003e \u003ctd align=\"left\" colname=\"c3\"\u003e \u003cp\u003e9 (56.3)\u003c/p\u003e \u003cp\u003e4 (25.0)\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003cp\u003e1 (6.3)\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003cp\u003e0\u003c/p\u003e \u003cp\u003e1 (6.3)\u003c/p\u003e \u003cp\u003e1 (6.3)\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eTen ICS participants from two of the three study regions participated in three individual interviews and one focus group.\u003c/p\u003e \u003cp\u003eWhile many managers volunteered their homes\u0026rsquo; involvement, in larger chains, participation could be determined by senior staff working remotely from the home, which may have influenced within home engagement in data collection. Some managers, new to post, inherited a decision to participate from a predecessor. In these situations, researchers provided additional support to explain and promote the study and stress participation was an individual\u0026rsquo;s choice.\u003c/p\u003e \u003cp\u003eThe additional measures added to the DCR were not routinely collected and represented new work for care home staff to input. Experience of completing the additional measures ranged from the home manager completing them for all residents, to named staff members being allocated the task, taking account of concerns including workload, consistency of approach and accuracy.\u003c/p\u003e \u003cp\u003e The presentation of an example MDS output to ICS participant interviews and focus group enabled active engagement, interpretation and reflection and peer-peer interaction within the focus groups that went beyond ICS participants\u0026rsquo; experience, predominantly, of working with care homes to resolve concerns or difficulties in care provision.\u003c/p\u003e \u003cp\u003eThree main themes were developed from the data concerning professional perspectives on implementation and use of data from the pilot MDS: care home context and the importance of an MDS for care; appropriateness and relevance of QoL measures to resident care; and MDS data quality and purpose of data collection \u003cb\u003e(see\u003c/b\u003e Fig.\u0026nbsp;\u003cspan refid=\"Fig1\" class=\"InternalRef\"\u003e1\u003c/span\u003e\u003cb\u003e)\u003c/b\u003e.\u003c/p\u003e \u003cp\u003e \u003c/p\u003e \u003cdiv id=\"Sec11\" class=\"Section2\"\u003e \u003ch2\u003eCare home context and the importance of an MDS for care\u003c/h2\u003e \u003cp\u003eCare home staff operated against a backdrop of workforce pressures and rapid post pandemic change towards digitalisation and reporting. Care homes from one chain had introduced new DCR Software in the year leading up to the research project. Comments to the research team suggested that for some staff completing the MDS was affected by how familiar they were using DCR. Staff turnover during the study period influenced uptake, for example, when managers and/or staff members co-ordinating study involvement in some of the homes changed. This affected how the MDS was prioritised. The most marked example was that a large corporate chain of care homes withdrew from the study because of a change in ownership and changes in how their DCR software was implemented. Elsewhere, completion was influenced by the equipment, digital literacy, and the culture of how residents\u0026rsquo; needs were documented for example, if DCRs were the basis for staff handovers and discussion of residents\u0026rsquo; needs. This staff member from the outset could anticipate how the MDS would be incorporated into the routine of the care home:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u0026hellip;\u003cem\u003eI think if it was to be rolled out, it would just get included in the monthly review of the care plans. It wouldn't be our nurses saying, well, I'm not doing that bit, it would actually form part of the monthly or the review of the care plan (Deputy Manager 4, W1 Focus Group)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eUnsurprisingly, staff accounts reflected an overlay between the experience of implementing the care home part of the MDS, and the experience of being involved in a research study. There was willingness to support the research, but without mandate or additional resources for staff time, even with researcher support, managers had to prioritise front line care. These, to an extent, reflect the wider experience of conducting research in care homes, but also reflect the challenges that would accompany MDS implementation in real life. For those who did persevere and became familiar with the format the inputting required was considered to be simple. It was an artefact of the study timeline that to ensure comparable and meaningful data were extracted for all participating residents, homes needed to collect, collate, and enter additional measures within a month. One participant noted that if collecting these measures became routine, completion could be spread out and more manageable.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eIt was just the fact that we were getting so much information in a short space of time. If it was somebody moving into the home, you'd be doing that set of questions with them and then reviewing it every month on more of a one-to-one basis. Rather than it being like right, I need all 30 people to answer these questions now (Manager 18, W2 Focus Group)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eIf data capture became routine, and data were entered contemporaneously, then care home staff saw the possibility that data could inform resident care planning forming a positive-feedback loop. Staff would be motivated by the available data and the ways in which it had helped them to deliver and improve care. This, in turn, would lead staff to emphasise the importance of data entry as part of their wider routine. However, this was threatened by the specification and availability of digital and handheld devices and the accessibility of residents\u0026rsquo; data. Some of the additional measures were too detailed for a small screen and required a desktop computer. Desktops, meanwhile, were limited in number, sometimes in places away from direct care and could be used by multiple staff for different competing activities. The ability to access information and data when needed during care delivery was suggested as a likely reinforcer of completion if an MDS became routine \u0026ndash; but only if these issues of data accessibility and device availability were addressed:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eHopefully, by having easier access to information and quicker access, rather than having to kind of ring round the houses to find out information that hopefully would, you know, you could just log on to a system and see there. (Manager 5, W1 Focus Group)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere were wider concerns about how the sector could address worries about knowledge, skills, and confidence of care home staff, ensuring staff were equipped to administer the care home element of the MDS. Training was seen as one way to address this:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eA bit more teaching of how to use the information, how to extract the information.....And then hopefully getting them to understand it's not a foreign concept and yes, it can be adopted, or adapted in care homes I should say. (Manager 18, W2 Focus Group)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe number of residents lacking mental capacity placed pressure on how resident data were collected and who was accountable. Managers and staff felt responsible for making decisions in residents\u0026rsquo; best interests and ensuring 'the right people' were involved. This seemed to be a particular concern regarding QoL measures with staff acting as a resident proxy. There were two issues: whether these fitted with their understanding of how to represent the resident; and staff confidence completing new measures. In some cases, this related to the quantitative nature of the data. Thinking ahead, this manager could see staff would need support as part of phased implementation:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eYou know, some of the decisions we\u0026rsquo;re inputting, it has to be clear we\u0026rsquo;re inputting as a best interest rather than the individual.....So it is more of our views, the relative view, and it's really, unless they have a full mental capacity that it's quite difficult to capture that. (Manager 8, W1 Focus Group)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eSo, I think everyone at the start will be nervous about it \u0026hellip;. anytime I throw numbers, even if they have to do observations, they\u0026rsquo;re like oh, oh I'm not sure. So, you would have to really take small steps introducing it. (Manager 18, W2 Focus Group)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec12\" class=\"Section2\"\u003e \u003ch2\u003eAppropriateness and relevance of QoL measures to resident care\u003c/h2\u003e \u003cp\u003eCare home staff highlighted that QoL measure content directly affected their completion and use, especially the perceived appropriateness of some QoL items, whether they felt it possible to quantify QoL, and whether and how staff should or could address the domains included.\u003c/p\u003e \u003cp\u003eThough the pilot did not recruit residents considered to be at the end-of-life, concerns about the appropriateness of asking older or unwell residents about their QoL were shared. This raised an important issue around which measures are collected and when, given the short time that many people spend living in care homes. Whether carers felt they could or should respond to QoL domains influenced staff engagement with the MDS. One participant was uncomfortable about the ICECAP-O item on love and friendship and its measurability. Appropriateness was challenged, whilst they accepted, they were responsible for enjoyment (another ICECAP-O item), they questioned if ensuring love should be care homes\u0026rsquo; responsibility:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThe group of people we look after are of a very old age with a lot of end-of-life care here and sometimes it can feel a bit inappropriate to ask these questions as well, like how do you feel? Well, how do you want me to feel, I'm dying [laugh]. (Manager 6, W1 Focus Group)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eI found it's quite hard to measure love. That might just be how someone feels and that, affected by whether they've got family, whether they've got a good relationship with their family and things like that. Enjoyment sort of feels like it's more our responsibility, if that makes sense.\u003c/em\u003e (\u003cem\u003eManager 17, W2 Focus Group)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eICS participants highlighted wider influences when interpreting data on QoL of residents which need to be considered. They recognised the value of reframing care to focus on the person, their individual needs and perspectives, bringing in concepts of person- and relationship-centred care. For example, enabling homes to evidence the rationale for care plans that reinforced positive risk taking and acknowledging what they can and cannot influence such as how someone feels about being in a care home.\u003c/p\u003e \u003cp\u003eCare home staff reflected how some questions, such as the ICECAP-O item \u0026lsquo;thinking about the future\u0026rsquo;, could trigger different ways of discussing care by prompting conversations about the future not solely about preferences and priorities for end of life. It encouraged staff to consider what could be done to improve QoL for residents in the present:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003ethat person\u0026rsquo;s dignity, their control over their life, safety, it [the QoL measure] all presumes that that comes from the care home. But actually, we [ICS commissioners] know that there are multiple factors that impact on a person's safety and risk taking\u0026hellip;....we've got to see people as that holistic being, with multiple factors impacting on them. (ICS participant 3, Focus Group)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eIf I'm honest in terms of a care home, future planning and future preparing, all we do is look at what people's wishes are at the end of their life......There's not as much that we do in terms of well actually, what do you want to do.....So yeah, shines a bit of a light on how we can look at that differently\u003c/em\u003e. (\u003cem\u003eManager 17, W2 Focus Group\u003c/em\u003e)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eBelieving data could impact on residents QoL was seen as key facilitator towards completion \u0026ndash; triangulating with the point made earlier about positive feedback loops inspiring data completion. This was also the case where data informed care home teams ideas about what they were good at, and where further training and staff development were needed.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e....\u003cem\u003emaybe if it\u0026rsquo;s something you had on a monthly basis, you'd be able to then look ahead and say right, well, we've got this training planned, is there something that we need to add in because this has all of a sudden shot up? (Manager 7, W2 Focus Group)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eSeveral care home participants discussed how QoL measures fostered a wider view of care beyond medical or physical needs, or environment. Care home participants suggested that QoL measures, ASCOT-Proxy in particular, not only provided a more structured in-depth account of residents\u0026rsquo; lives but could also facilitate person-centred approaches to care that enhanced their care work involving staff and providing opportunities for family and friends to contribute:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e.....\u003cem\u003ewe can sit with them and discuss things with them that we wouldn't normally discuss with them. The care plans, on a whole are becoming so person centred it warms my heart. Our residents are getting much, much better looked after, and this is all because of the DACHA study.... It's changed the way I look at things, and I'm sure if CQC comes out we\u0026rsquo;ll be able to say to them, look, we've been involved in this study and we've noticed that this has improved our level of care, and the input from our residents and their families\u003c/em\u003e\u003c/p\u003e\u003cp\u003e\u003cem\u003eIt would definitely contribute to the evidence that we would be providing to CQC to say what we do is outstanding. It's definitely what we would use. Because a lot in (Software name) as well, all the risk assessments and stuff that we already do on there are very, very clinical. It's all based on how someone, how your body works, that's what it is. And so....adding all of these additional things in, we're looking at people holistically, it\u0026rsquo;s so person centred, it's beautiful. (Manager 16 and Manager 17, W2 Focus Group)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere was evidence that participating homes used the QoL data to inform changes in practice. Some participants were hopeful that continued use could positively impact residents\u0026rsquo; lives. They recognised the process did not necessarily lead to \u0026ldquo;answers\u0026rdquo; but triggered important conversations. Part of this was that QoL data could present details about how residents regarded their lives, or day-to-day care, that care home staff found distressing, but that they also found it important to hear to deliver care that met residents\u0026rsquo; needs.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eThis is quite heart breaking for me in the setting that I work in, quite devastating. How do you feel about your future, when someone can't remember what day of the week it\u0026hellip;..it's great that we are capturing what's important to people, but this was quite difficult. (Manager 4, W1 Focus Group)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eBalanced against these views was the sense, for some participants that quantitative summaries of QoL were reductive and driven more by measurement than care concerns. For participants who espoused these views, they couldn\u0026rsquo;t cite examples from their own care homes where QoL data had facilitated reflection or improvement. It is not clear the extent to which negative baseline views about QoL measures cultivated disengagement, or whether these staff had tried to work with the measures and found them of limited use in practice.\u003c/p\u003e \u003c/div\u003e \u003cdiv id=\"Sec13\" class=\"Section2\"\u003e \u003ch2\u003eMDS data quality and purpose of data collection\u003c/h2\u003e \u003cp\u003eCare home and ICS participants recognised the importance of data quality, as it would influence uptake and data use. Care staff are expected to deliver care and it is a role that carries much responsibility. Managers expressed concerns over the expectations being placed on a low-paid workforce:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eyou want all that accurate data straight away. But I mean this with no disrespect to absolutely anybody, we employ an unskilled labour force that are being paid minimum wage, and yet we want the highest of standards in the most regulated industry that I know of. (Manager 11, W1 Focus Group)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere was an extended discussion between ICS participants that they needed to be more trusting, recognising that their opinions were often prejudiced by having to focus on the (minority) of care homes who were not performing well. This related to two areas of data collection, reporting on residents\u0026rsquo; unmet need and the use of proxy assessments.\u003c/p\u003e \u003cp\u003eFor some ICS participants, what emerged was a belief that care homes and their staff were likely to be biased in their reporting. They wondered if care home staff might feel exposed by highlighting unmet needs and be tempted to frame data entry in a way that portrayed care in the home in a positive light. This was based largely upon supposition and no respondents gave examples where care homes had done this in the past.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e... \u003cem\u003eit's going to reflect on the overall care of the care home. So, part of me would be questioning the validity of the data from the care staff who've completed it. You're not going to want to say that they've got safety unmet needs in a care home necessarily.\u003c/em\u003e (\u003cem\u003eICS participant 1, Interview\u003c/em\u003e)\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThe ICS focus groups also expressed concerns about using proxies to understand QoL, with a preference for measures based on resident self-report QoL, exposing a lack of understanding about care home residents\u0026rsquo; capacity to complete such measures. Balanced against this was a recognition that data about care home residents\u0026rsquo; lives, experiences and QoL are scarce. Proxy data are better than the current inability to meaningfully describe these:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt\u0026rsquo;s not like we're not trusting them or not that we think that they're fudging the data or the results. I just don't understand how you can make that analysis of somebody else's quality of life.....Even if you ask my partner, my family, what they would say, and the answers they would give would be different to what I would give. (ICS participant 8, Focus Group)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e \u003cem\u003eQoL metrics....are something that are lacking within datasets, not just in care homes, I think generally across data that we collect. So, I think this is very welcome. (ICS participant 9, Interview)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eCare home staff shared this sense that proxies somehow fell short of the aspiration of individualised person-centered care. There were examples of staff despite being asked to complete QoL measures in a resident-proxy format, describing how they would engage in additional conversations with residents to try and validate their interpretation of the measures.\u003c/p\u003e \u003cp\u003eDespite ICS participants\u0026rsquo; concerns around data accuracy, they were able to propose ways data could add value to care. An example around aggregating resident level data to describe the health of the local care home population, and how they used hospitals services over time, illustrated how an MDS could support wider ICS work on population health, resource use and trends. Both care home and ICS participants understood that an MDS has different purposes for different people. For care home representatives, a secondary use of the data could be to evidence their interactions with other parts of the health and social care system. For example, data from the MDS could demonstrate a care home requires more support from visiting health services. These two quotes from an ICS and care home staff participant respectively, demonstrate how aggregate data could inform service review:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eI think most ICSs are doing, is looking at population health management. So, this isn't about necessarily tackling individual residents and the issues that they face, but it's looking at care homes. And actually, are there clusters of care homes, and a lot of them are provided by the same provider for instance, or in the same patch, or they have the same GP linked to them, for instance. (ICS participant 9, Interview)\u003c/em\u003e \u003c/p\u003e\u003cp\u003e...\u003cem\u003ethat could be a possibility, to start the conversation with your local authority, CCG to actually identify that there is a lack here, the GP is not supporting.....We can have a conversation and evidence to say that this is the problem comparatively. You know, our home is not receiving the sufficient support, so is there anything that you can actually bring us, give us, something along those lines, yeah. (Manager 9, W2 Focus Group)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eBoth care home and ICS participants said that care homes would want to use data to show regulators how well they supported residents, supporting the case their home provided outstanding care:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIt's really hard to say what you do and how you do it and be able to prove that. ... I'm thinking for the homes and the workforce in that home, to be able to go and say actually we do a really good job. Our score reflects that we are good at what we do. (ICS participant 5, Focus Group)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eUsing data outside of care homes to create national and local averages would, according to ICS participants, enable benchmarking against other providers. It was hoped this could stimulate \u003cem\u003e\u0026ldquo;a bit of healthy competition\u0026rdquo; (ICS participant 9, Interview)\u003c/em\u003e and improve performance across the sector. Other ICS participants suggested that QoL could be seen as a marker of care quality and used by the public to value care homes.\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e \u003cem\u003eIf [MDS data] went to the public domain......to say that they've got a two [for] QoL or whatever. Then actually, I'd look at CQC rating and it\u0026rsquo;d be good to have that as well.....So, I think we do compare at the minute just on that ratings and I think it would be good to understand, to have a QoL [score] would be great for all of us. (ICS participant 3, Focus Group)\u003c/em\u003e \u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003cp\u003eThere was discussion of using MDS data to sanction or motivate care homes. The data were attractive to ICSs who were considering how to support quality in their regions. A focus on quality improvement, however, was defined more negatively as \u003cem\u003e\u0026ldquo;scrutiny\u0026rdquo;\u003c/em\u003e by another ICS participant (\u003cem\u003eICS participant 4, Focus Group\u003c/em\u003e) demonstrating how underlying beliefs and assumptions about the role of ICS when working with care homes could affect how MDS findings are perceived.\u003c/p\u003e \u003cp\u003eThere were contrasting views about if the data should be widely available. Using data to make judgements without understanding the context of care or the variation of provision was a recurring concern for some care home participants:\u003cdiv class=\"BlockQuote\"\u003e\u003cp\u003e\u003cem\u003eI think if it's freely available, I think that's not really good. I think if you're able to take different aspects of it to use to promote or develop your care and things, that's fine. But not for all and sundry to have full access to everything, because it's judgments again, isn't it? It's making those judgments on the different areas, different homes. (Manager 15, W2 Focus Group)\u003c/em\u003e\u003c/p\u003e\u003c/div\u003e\u003c/p\u003e \u003c/div\u003e"},{"header":"Discussion","content":"\u003cp\u003eData collection in care homes is often represented as administrative work, externally imposed, distracting from core caring responsibilities. Participants\u0026rsquo; accounts in this study provided evidence of circumstances supporting culture shift to one where resident data informs day-to-day care. A systematic approach to collecting data on residents\u0026rsquo; characteristics and QoL could increase staff awareness and directly inform care planning and delivery. For those care homes who persevered with data capture they identified benefits for individual residents and increased job satisfaction in being able to link care work to how it was documented and discussed. The process of data capture was valued when it enabled identifying residents\u0026rsquo; preferences and priorities, evidencing the care staff deliver and identifying areas for improvement. We found that meaningful change required senior staff involvement, a level of organisational readiness, shared confidence in validity of the data, and a belief that new systems aligned with existing organisational values. Data use beyond the care home required trust in data capture and interpretation which is aware of the diversity of care home residents, their capacity to articulate their needs and the circumstances of the homes which support them. While there is a potential value in comparing services and enabling benchmarking, there is a need for data to be adjusted to account for differences in the resident population which may impact findings.(\u003cspan citationid=\"CR28\" class=\"CitationRef\"\u003e28\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eThe implementation process relied on staff interest and encouragement from researchers and evidence of direct benefit to the resident and staff supporting them. Despite this, some homes stopped collecting data. Sustaining consistent data capture and use requires assessment of staff availability, engagement, and IT resources. Ongoing training needs to reinforce the importance of different data categories, underpinned by opportunities to discuss the evidence within and beyond the care home. These findings are consistent with prior work implementing innovation in care homes,(\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR30\" class=\"CitationRef\"\u003e30\u003c/span\u003e) where health and social care organisations and their staff have established ways of working together based on trust and parity of esteem.(\u003cspan additionalcitationids=\"CR32\" citationid=\"CR31\" class=\"CitationRef\"\u003e31\u003c/span\u003e\u0026ndash;\u003cspan citationid=\"CR33\" class=\"CitationRef\"\u003e33\u003c/span\u003e) The discussions about who completes, uses and shares MDS information, underline the need to pay more attention to systems of working within care homes and invest in activities that foster a sense of shared responsibility within care homes and with external partners. The narrative of digitalisation and integration needs to be explicit about the work required to achieve this.\u003c/p\u003e \u003cp\u003e Our review of MDS implementation internationally found mandates and incentives were key, complemented by bottom-up and top-down approaches for effective implementation.(\u003cspan citationid=\"CR14\" class=\"CitationRef\"\u003e14\u003c/span\u003e) Recent experiences of policy mandates and incentivised care home data capture during the COVID-19 pandemic (the Capacity Tracker) suggest that this alone does not guarantee data completeness or quality.(\u003cspan citationid=\"CR29\" class=\"CitationRef\"\u003e29\u003c/span\u003e, \u003cspan citationid=\"CR34\" class=\"CitationRef\"\u003e34\u003c/span\u003e) Incremental, reflective approaches, involving senior care home staff as implementation leaders, focussing on continuity and collaboration are also needed.(\u003cspan citationid=\"CR35\" class=\"CitationRef\"\u003e35\u003c/span\u003e, \u003cspan citationid=\"CR36\" class=\"CitationRef\"\u003e36\u003c/span\u003e) To reduce workload and duplication of effort, all stakeholders must be confident that the MDS is sufficient to address their information needs, with additions collectively negotiated and agreed.\u003c/p\u003e \u003cp\u003eThe researchers did not impose a specific approach with care home staff to complete additional measures. Instead, the study made these available to staff, provided support with practical issues, then observed and reflected on how staff collected and used the data. The experiences shared provide evidence of the potential value added by the data to influence resident care, enhance staff interactions and increase job satisfaction. Some staff found it difficult to explore topics where residents reflected negatively on their own QoL or overtly acknowledged their own limited life expectancy, within our data and our public engagement involving residents.(\u003cspan citationid=\"CR16\" class=\"CitationRef\"\u003e16\u003c/span\u003e) These discussions are important given the vulnerabilities and reality for many people living in care homes in mortality risk.(\u003cspan citationid=\"CR37\" class=\"CitationRef\"\u003e37\u003c/span\u003e) Other measures of personal outcomes have been developed but so far not tested more widely in care home settings.(\u003cspan citationid=\"CR38\" class=\"CitationRef\"\u003e38\u003c/span\u003e) Staff engagement in QoL measures as part of an MDS could be an important way to surface residents\u0026rsquo; views using them to inform and personalise their care, enhancing relationships, known to enhance care quality.(\u003cspan citationid=\"CR39\" class=\"CitationRef\"\u003e39\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eTo enable participation and systematic evaluation of QoL among the care home population, there is a need to use proxy measures.(\u003cspan citationid=\"CR22\" class=\"CitationRef\"\u003e22\u003c/span\u003e, \u003cspan citationid=\"CR40\" class=\"CitationRef\"\u003e40\u003c/span\u003e) Despite evidence of validity this was not universally accepted by data users. Education and support is required around this, appreciating proxy measures are not intended as equivalent to those from individuals, but a valid way to offer insight into the QoL of those who would otherwise be excluded.(\u003cspan citationid=\"CR41\" class=\"CitationRef\"\u003e41\u003c/span\u003e, \u003cspan citationid=\"CR42\" class=\"CitationRef\"\u003e42\u003c/span\u003e)\u003c/p\u003e \u003cp\u003eReflecting on the data overall, we make recommendations to inform MDS implementation in Table\u0026nbsp;\u003cspan refid=\"Tab3\" class=\"InternalRef\"\u003e3\u003c/span\u003e and have identified six research questions to inform a national roll-out in Table\u0026nbsp;\u003cspan refid=\"Tab4\" class=\"InternalRef\"\u003e4\u003c/span\u003e.\u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab3\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 3\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eRecommendations on measures to support care home MDS implementation\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e\u0026bull; Planned data collection periods that reflect care home priorities and routines\u003c/p\u003e \u003cp\u003e\u0026bull; Resource to support additional data gathering\u003c/p\u003e \u003cp\u003e\u0026bull; Training to support staff familiarisation, confidence and adoption of new measures\u003c/p\u003e \u003cp\u003e\u0026bull; Adequate IT facilities and fit between the hardware and software to enable the completion of simple and more complex assessments close to the older person\u003c/p\u003e \u003cp\u003e\u0026bull; Ability for data to influence residents\u0026rsquo; care planning\u003c/p\u003e \u003cp\u003e\u0026bull; Care home leadership engaged with data capture and supports the embedding of practices that enable review and discussion of MDS\u003c/p\u003e \u003cp\u003e\u0026bull; Care home staff, commissioners and visiting professionals develop ways of working that reference MDS findings\u003c/p\u003e \u003cp\u003e\u0026bull; Resources and policy briefings that promote a shared understanding of QoL outcome measures. Specifically, how they can inform practice, commissioning and evaluation, recognising when differences in residents\u0026rsquo; profiles are due to factors outside of the care homes' control.\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003e \u003cdiv class=\"gridtable\"\u003e\u003ctable float=\"Yes\" id=\"Tab4\" border=\"1\"\u003e \u003ccaption language=\"En\"\u003e \u003cdiv class=\"CaptionNumber\"\u003eTable 4\u003c/div\u003e \u003cdiv class=\"CaptionContent\"\u003e \u003cp\u003eQuestions arising from findings requiring further exploration before widespread implementation\u003c/p\u003e \u003c/div\u003e \u003c/caption\u003e \u003ccolgroup cols=\"1\"\u003e \u003cdiv align=\"left\" class=\"colspec\" colname=\"c1\" colnum=\"1\"\u003e\u003c/div\u003e \u003ctbody\u003e \u003ctr\u003e \u003ctd align=\"left\" colname=\"c1\"\u003e \u003cp\u003e1. How do staff respond, in terms of their feelings and care actions, following structured evaluation of a residents\u0026rsquo; quality of life?\u003c/p\u003e \u003cp\u003e2. What support do staff need after hearing difficult responses around quality of life among the residents they care for?\u003c/p\u003e \u003cp\u003e3. What is the optimal timing and frequency of MDS data collection, focusing on the perspective of influencing direct care?\u003c/p\u003e \u003cp\u003e4. How can software providers best integrate new measures into their products to make quality of life information accessible to frontline care staff and other data users (e.g. accessing current/previous assessments, longitudinal data and trends at a resident and care home level)?\u003c/p\u003e \u003cp\u003e5. What information and training do stakeholders need to facilitate their interpretation and use of MDS data collected about the care homes they support?\u003c/p\u003e \u003cp\u003e6. How will longitudinal data be interpreted and used if quality of life becomes routinely evaluated in UK care homes?\u003c/p\u003e \u003c/td\u003e \u003c/tr\u003e \u003c/tbody\u003e \u003c/colgroup\u003e \u003c/table\u003e\u003c/div\u003e \u003c/p\u003e \u003cp\u003eA key strength of the work is drawing on care home staff experience of collecting resident data on QoL, cognition and function to add to the MDS and using the data these generated in their practice. In addition, using pilot MDS data to facilitate discussion with ICS participants and care home staff enabled exploration of potential data use. This facilitated authentic testimony based upon lived experience. Discussions were further focussed onto areas relevant to implementation by using CFIR as an organising principle, with a shift to more inductive analysis to capture the richness of individual experiences. We acknowledge the potential selection bias associated with including those who completed the additional measures in our sample and not those who did not. There are questions around homes\u0026rsquo; representativeness in terms of their capacity to take on additional work and we acknowledge that the enthusiasm of staff for the additional measures is likely to have contributed to participation. Our care home participants were predominantly senior staff, as they took the lead on data completion, thus the perspectives of care staff are under-represented within the workforce. Finally, we recognise care homes were at different stages in terms of familiarity with DCR software and the study then altered this content. This represents a change from usual activity, but then so would de novo implementation of an MDS in real-world settings.\u003c/p\u003e"},{"header":"Conclusions","content":"\u003cp\u003eOur data show it is feasible for care home staff to complete structured measures assessing residents QoL, function and cognition to contribute to a pilot MDS using existing DCR software. The data generated by their assessments can be used to inform and influence residents\u0026rsquo; care to enhance existing practice. Successful implementation requires a cultural shift such that measures are perceived as appropriate and relevant to direct care with resources to sustain their use. This should be recognised by policymakers and practitioners as an evolving process that requires senior support, and investment in activities that build trust and confidence of those collecting and interpreting data, mindful of the context in which they were collected.\u003c/p\u003e"},{"header":"Abbreviations","content":"\u003cdiv class=\"DefinitionList\"\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eCFIR\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eConsolidated Framework for Implementation Research\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eCOVID\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003e \u003cb\u003e19\u003c/b\u003e\u0026ndash;Coronavirus disease caused by SARS\u0026ndash;CoV\u0026ndash;2 virus\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eDACHA\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDeveloping research resources And minimum data set for Care Homes Adoption and use\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eDCR\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eDigital Care Record\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eFG\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eFocus Group\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eICS\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eIntegrated Care System\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eMDS\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eMinimum Data Set\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eNHS\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eNational Health Service\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eQoL\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eQuality of Life\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003cdiv class=\"DefinitionListEntry\"\u003e \u003cdiv class=\"Term\"\u003e\u003cb\u003eUK\u003c/b\u003e\u003c/div\u003e \u003cdiv class=\"Description\"\u003e \u003cp\u003eUnited Kingdom\u003c/p\u003e \u003c/div\u003e \u003c/div\u003e \u003c/div\u003e"},{"header":"Declarations","content":"\u003cp\u003e\u003cstrong\u003eEthics approval and consent to participate:\u0026nbsp;\u003c/strong\u003eThe study received ethical approval from the London Queen’s Square Research Ethics Committee (22/LO/0250).\u003c/p\u003e\n\u003cp\u003eAll participants provided individual informed consent to participate.\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eConsent for publication:\u0026nbsp;\u003c/strong\u003eNot applicable\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAvailability of data and materials:\u0026nbsp;\u003c/strong\u003eThe data generated and analysed during the current study are not publicly available due to the ethical approvals secured for the study but are available from the corresponding author on reasonable request in de-identified form.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eCompeting interests:\u0026nbsp;\u003c/strong\u003eThe authors declare that they have no competing interests\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eFunding:\u0026nbsp;\u003c/strong\u003eThis study is funded by the National Institute for Health and Care Research (NIHR) [HS\u0026amp;DR 127234/Health Service Delivery Research programme] and supported by NIHR ARC East of England. Several authors are supported by the NIHR Applied Research Collaborations in East Midlands (ALG), Kent, Surrey and Sussex (AMT); North East and North Cumbria (BH); Yorkshire and Humber (KS) and East of England (AK, CG). The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.\u0026nbsp;\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAuthors’ contributions:\u0026nbsp;\u003c/strong\u003eThe study was designed by REC, SERP, ALG, AMT and SER. Data were collected by REC and SERP. Data analysis and writing were led by REC, NS, SERP, ALG, AMT, JKB and CG. SER, FT, AK, LW, BH, KS, GA, KDC \u0026amp; JM were involved in substantially revising the initial draft and all authors have approved the submitted version.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003e\u003cstrong\u003eAcknowledgements:\u0026nbsp;\u003c/strong\u003eWith thanks to all DACHA study participants – people living in care homes and the care home staff supporting them – without whom it would not have been possible to pilot the MDS.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eWe are grateful to those who care home staff and ICS participants who gave up their time to participate in this part of the study.\u0026nbsp;\u003c/p\u003e\n\u003cp\u003eRecruitment to the study was supported by the Clinical Research Network Research Delivery Teams in Kent, Surrey and Sussex and the Direct Delivery Team LCRN North East and North Cumbria Partner Organisation.\u003c/p\u003e\n\u003cp\u003eThe authors would also like to thank Louise Jones, Research Nurse, Northumbria Healthcare NHS Trust for her support with the study.\u003c/p\u003e"},{"header":"References","content":"\u003col\u003e\u003cli\u003e\u003cspan\u003eHanratty B, Wolters AT, Towers AM, Spilsbury K, Meyer J, Killett A et al. 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Adult Social Care User Survey (ASCS). 2023-24 guidance and materials for councils 2023 [cited 2024 2nd May]. \u003cspan class=\"ExternalRef\"\u003e\u003cspan class=\"RefSource\"\u003ehttps://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/social-care-user-surveys/adult-social-care-user-survey-ascs-2023-24\u003c/span\u003e\u003cspan address=\"https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/social-care-user-surveys/adult-social-care-user-survey-ascs-2023-24\" 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":false,"highlight":"","institution":"","isAcceptedByJournal":true,"isAuthorSuppliedPdf":false,"isDeskRejected":"","isHiddenFromSearch":false,"isInQc":false,"isInWorkflow":false,"isPdf":false,"isPdfUpToDate":true,"isWithdrawnOrRetracted":false,"journal":{"display":true,"email":"[email protected]","identity":"bmc-geriatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bgtc","sideBox":"Learn more about [BMC Geriatrics](http://bmcgeriatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bgtc/default.aspx","title":"BMC Geriatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true},"keywords":"Care homes, minimum data set, quality of life, measures, implementation","lastPublishedDoi":"10.21203/rs.3.rs-4564243/v1","lastPublishedDoiUrl":"https://doi.org/10.21203/rs.3.rs-4564243/v1","license":{"name":"CC BY 4.0","url":"https://creativecommons.org/licenses/by/4.0/"},"manuscriptAbstract":"\u003cp\u003e\u003cb\u003eBackground\u003c/b\u003e\u003c/p\u003e \u003cp\u003edigitalisation within English care homes offers potential to make more effective use of substantial data collected by staff during care planning and recording. A pilot minimum data set (MDS) was co-designed with stakeholders based on two digital care records (DCRs) with additional structured measures.\u003c/p\u003e\u003cp\u003e\u003cb\u003eObjectives\u003c/b\u003e\u003c/p\u003e \u003cp\u003eto explore care home staff opinions and experiences of collecting structured measures of quality of life (QoL), cognition and function for residents and how MDS data might be used by staff and other professionals interested in care homes.\u003c/p\u003e\u003cp\u003e\u003cb\u003eDesign:\u003c/b\u003e\u003c/p\u003e \u003cp\u003efocus groups (FGs) and interviews\u003c/p\u003e\u003cp\u003e\u003cb\u003eSetting:\u003c/b\u003e\u003c/p\u003e \u003cp\u003ethree Integrated Care System (ICS) regions of England\u003c/p\u003e\u003cp\u003e\u003cb\u003eSubjects:\u003c/b\u003e\u003c/p\u003e \u003cp\u003ecare home staff and ICS participants\u003c/p\u003e\u003cp\u003e\u003cb\u003eMethods\u003c/b\u003e\u003c/p\u003e \u003cp\u003eonline FGs and interviews using a semi-structured topic guide. Data collection involved two waves of care home FGs, following MDS data capture, and one with ICS participants. Reflexive thematic analysis was used to develop themes.\u003c/p\u003e\u003cp\u003e\u003cb\u003eResults\u003c/b\u003e\u003c/p\u003e \u003cp\u003etwenty-four staff from 22 homes and 16 staff from 15 homes participated in wave one and two FGs respectively. Ten ICS participants from two of three regions participated. Three themes were developed: the care home context and the importance of an MDS for care, appropriateness and relevance of QoL measures to resident care, and data quality and purpose.\u003c/p\u003e\u003cp\u003e\u003cb\u003eConclusions\u003c/b\u003e\u003c/p\u003e \u003cp\u003eit is feasible for staff to collect structured measures on resident QoL, function and cognition using DCRs to contribute to an MDS. The data generated can inform and enhance resident care. However, implementation is an evolving process requiring support, trust-building and confidence among those collecting and interpreting data.\u003c/p\u003e","manuscriptTitle":"Piloting a Minimum Data Set (MDS) in English care homes: a qualitative study of professional perspectives on implementation and data use","msid":"","msnumber":"","nonDraftVersions":[{"code":1,"date":"2024-06-19 15:09:26","doi":"10.21203/rs.3.rs-4564243/v1","editorialEvents":[{"type":"communityComments","content":0},{"type":"decision","content":"Revision requested","date":"2024-10-04T16:06:49+00:00","index":"","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-08-28T13:39:18+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-08-28T12:34:13+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"306277659365113313959767101603081459976","date":"2024-08-18T14:13:27+00:00","index":"hide","fulltext":""},{"type":"editorInvitedReview","content":"","date":"2024-08-14T12:56:37+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"844736788370457502235028017363215803","date":"2024-08-08T12:09:38+00:00","index":"hide","fulltext":""},{"type":"reviewerAgreed","content":"126116512450090150519373597807373892481","date":"2024-08-06T09:09:51+00:00","index":"hide","fulltext":""},{"type":"reviewersInvited","content":"","date":"2024-08-06T05:24:37+00:00","index":"","fulltext":""},{"type":"editorInvited","content":"","date":"2024-06-19T12:34:34+00:00","index":"","fulltext":""},{"type":"editorAssigned","content":"","date":"2024-06-17T12:29:30+00:00","index":"","fulltext":""},{"type":"checksComplete","content":"","date":"2024-06-17T12:29:23+00:00","index":"","fulltext":""},{"type":"submitted","content":"BMC Geriatrics","date":"2024-06-11T12:47:50+00:00","index":"","fulltext":""}],"status":"published","journal":{"display":true,"email":"[email protected]","identity":"bmc-geriatrics","isNatureJournal":false,"hasQc":true,"allowDirectSubmit":false,"externalIdentity":"bgtc","sideBox":"Learn more about [BMC Geriatrics](http://bmcgeriatr.biomedcentral.com/)","snPcode":"","submissionUrl":"https://www.editorialmanager.com/bgtc/default.aspx","title":"BMC Geriatrics","twitterHandle":"BMC_series","acdcEnabled":true,"dfaEnabled":false,"editorialSystem":"em","reportingPortfolio":"BMC Series","inReviewEnabled":true,"inReviewRevisionsEnabled":true}}],"origin":"","ownerIdentity":"e8bcc4af-08ce-4b81-83fb-f8faf6478174","owner":[],"postedDate":"June 19th, 2024","published":true,"recentEditorialEvents":[],"rejectedJournal":[],"revision":"","amendment":"","status":"under-review","subjectAreas":[],"tags":[],"updatedAt":"2025-07-09T11:08:36+00:00","versionOfRecord":[],"versionCreatedAt":"2024-06-19 15:09:26","video":"","vorDoi":"","vorDoiUrl":"","workflowStages":[]},"version":"v1","identity":"rs-4564243","journalConfig":"researchsquare"},"__N_SSP":true},"page":"/article/[identity]/[[...version]]","query":{"redirect":"/article/rs-4564243","identity":"rs-4564243","version":["v1"]},"buildId":"qtupq5eGEP_6zYnWcrvyt","isFallback":false,"isExperimentalCompile":false,"dynamicIds":[84888],"gssp":true,"scriptLoader":[]}