In the last ten years, research in and with older adult care homes has grown in response to the population's complex health and social care demands.
Residents' needs, preferences, and care are collected by care homes, visiting physicians, commissioners, and regulators. In England, there is no standard approach to how this information is organised, handled, or shared between organisations. Without a national core dataset based on resident-level information very little, outside of research evidence, is known about this population. An increasing post-pandemic priority is ensuring efficient and effective sharing of resident data for the purposes of care planning, service development, commissioning and research. An MDS that links routine data with standardised measures has the potential to improve the care of older people, while reducing duplication and the administrative workload of care home staff.
The DACHA study (Developing research resources and minimum data set for care homes’ adoption and use) is an ARC East of England supported, NIHR HS&DR funded study being led by the University of Hertfordshire. The four-year project started in November 2019 and is divided into five work packages. The 14 collaborators come from seven ARCs, nine universities, the National Care Forum, The Health Foundation, and the Alzheimer’s Society Research Network.
In this session, we will present findings and work-in-progress from Work Packages 2-5 and outline our patient and public involvement and engagement strategy.
Presentation 1: What data do care homes collect? A national survey
Barbara Hanratty, University of Newcastle
Background: Multiple sources of evidence could inform the development of a minimum data set (MDS). Care home providers already collect information to support care delivery and for reporting to commissioners and regulatory authorities. Some of these data include outcomes relevant to resident quality of life and the provision/monitoring of care. However, little is known about the extent of data collection already underway in English care homes.
Objective: The aim of this study was to identify the range (and method) of data collected on care home residents in England, by care home organisations.
Methods: An online survey of care homes with and without nursing was designed, modified and piloted with representatives of the care home sector and patient and public involvement partners. Respondents representing English care homes were recruited via local research infrastructure, care home networks and social media.
Results: Data were returned by 273 respondents, representing over 5000 care homes. Care homes collect extensive data on health, care and support needs, preferences and activities of individual residents. Clinical measures and tools adopted from healthcare settings are commonly used. Collection of information on quality of life is not prioritised. Digital records were in place in most participating homes. The COVID-19 pandemic accelerated adoption of technology and increased data collection and sharing. Concerns over privacy and data protection regulations were reported as potential barriers to data sharing.
Conclusions: The care home sector is rich in data and increasingly uses digital technologies. Future developments should focus on refining rather than extending existing data collection, prioritising the needs and experiences of residents, and critically assessing the appropriateness of health-related tools in this setting.
Presentation 2: Bringing together administrative data and data from digital care records to create a minimum dataset for care home residents
Ann-Marie Towers, University of Kent
Stacey Rand, Lucy Webster
University of Kent
Background. Care homes have long been an overlooked part of the health and care system with regards to routine data collection and using robust quantitative insights to inform policy making. Although the recent pandemic has reiterated the importance of care homes in the wider system, it highlighted that a step-change in data collection and analysis is needed to understand the needs of the care home population. Avoidance of unnecessary duplication of data collection is vital to reduce the administrative burden on homes and support implementation.
Objectives. The DACHA study (Developing resources And minimum data set for Care Homes’ Adoption and use) is a programme of research to develop and test a minimum dataset (MDS) suitable for the care home sector in England. This paper reports on the final work package to pilot the prototype MDS and explore how resident quality of life and care data can be shared to the benefit of different health and social care stakeholders.
Methods. A mixed-methods longitudinal pilot of the MDS will be undertaken in 60 care homes for older adults in three Integrated Care Systems (ICS) sites in England. The study will assess the feasibility of collecting data directly from care homes that use digital care records and matching this to routinely collected health and social care data to populate a complete MDS. We will assess the quality of the MDS data, evaluate the usefulness of the matched MDS data to different health and social care stakeholders, and assess potential barriers and facilitators to the wider implementation of the MDS.
Results. The research is currently ongoing, but emerging findings from the DACHA study will be presented, including giving an overview of the content of the MDS and the data that will be extracted from digital care records. We will discuss the ethical information governance and data collection challenges that the team has overcome in delivering the project.
Conclusion. The project will demonstrate the value of local linked data systems for care home residents, whilst minimising the burden on care home staff through the use of digital care records, which will also future proof the MDS.
Presentation 3: Developing a care home trials archive
Lisa Irvine, University of Hertfordshire
Secondary data analysis is both low-risk and low-cost. Large randomised controlled trials (RCTs) conducted in care homes, provide a wealth of information about residents. These RCTs span a wide range of health and care themes (for example, dementia care, medication management, falls prevention, or infection). There is frequently overlap in assessment and outcome measures used, as well as information collected on both residents and the care home structure. In a research area where alternative data sources are scarce, if individual participant data (IPD) from existing trials is pooled, this would collectively provide a large and useful dataset for secondary analysis.
As part of the DACHA programme, we have developed a care home trials archive which will host RCTs with a range of clinical focuses. Trialists who contribute their data for use in the archive will serve as gatekeeper for their respective datasets, overseeing sharing, combining and repurposing of their trial data. All data received will be fully de-identified, resulting in the archive holding only anonymous data.
We will describe progress in pooling IPD from six large care home trials (data on 340 care homes and 5700 residents, collected from 2011-2019). We will report key characteristics about care homes and residents, clinical indicators such as hospitalisations, falls, and longitudinal data on several key outcome measures, including Barthel; EQ5D; DEMQoL, and MMSE.
In the absence of other datasets, this trials archive has the potential to be an important research resource and guide for further work on assessment and development of core outcomes for this population. Our work is underpinned by the insights from national expert consultation groups, and public involvement, allowing us to prioritise questions for future uses of the pooled data.
At the end of the DACHA study, the pooled individual participant data will be made available to other research teams, in user-friendly datasets specific to their explicit research question, through the Virtual Trials Archive at the University of Glasgow. The trials archive will be a research legacy of DACHA – a valuable source of high-quality, anonymised, resident data to aid future research progress specific to the care home population.
Presentation 4: Patient and public involvement and engagement on the DACHA study
Anne Killett, University of East Anglia
Julienne Meyer, City University
Liz Jones, National Care Forum
Pamela Blades, PPIE Representative
Kerry Micklewright, University of East Anglia
Chloe Bennett, University of Hertfordshire
Research with care homes is aiming to build new knowledge for best practice. There is increasing appreciation by researchers that this must be done collaboratively and as a meaningful shared venture with the people living and dying in care homes, their families and those providing care. The challenge is to develop shared understandings and a common language from which to build shared purpose. This presentation will consider the varied approaches taken and lessons learnt in the DACHA study, which was tailored to involving key stakeholder groups. We will illustrate these insights by showing how the input from various groups is shaping the development of a Minimum Data Set (MDS) for care homes. Finally, we will consider the implications of points that are held dear by various stakeholder groups but not resolvable within the MDS pilot and open-up discussion on what is working well in other projects so that we can learn from each other.
The DACHA study is investigating what should be in a ‘minimum data set’ for older care home residents. If such a data set is to support best practice in care for the older person, be usable and useful for care home staff, and valuable for integrated care, there are clearly a number of important perspectives that need to influence and inform the work. Our involvement plan incorporated five main approaches throughout the study:
a) Sector provider and family carer representatives were involved in the design of the project and invited to be co-applicants.
b) A former provider representative was invited to chair the Study Steering Committee which also had representation from care providers, residents and family carers together with policy, academic and regulatory expertise.
c) A Patient and Public Involvement and Engagement Panel was convened to listen to the voices of family carers, care home staff, and care home managers.
d) People living and dying in care homes were involved in the work by engaging with activity providers, in collaboration with the National Activity Providers Association.
e) Industry, regulatory, commissioning and policy expertise was incorporated through national consultation groups.
The study is ongoing but one clear message that is having a strong influence on the MDS is the importance of wellbeing and quality of life. People living in care homes, their families and those involved in providing care are highlighting what they value most about quality of life and want this to be in balance with quality of care. The DACHA MDS will be piloted to identify what is working well and what more needs to be done to implement it in practice.
Older people in care homes, their families and providers all wish to see better two-way information sharing between all those involved in delivering and receiving care. Such real time sharing is beyond the scope of the DACHA project which will use retrospective data from external health and social care organisations and limited rounds of data collection in care homes. The findings will inform recommendations for what should be included in an MDS, and what access is needed by which groups of people, if an MDS is implemented.
Listening to and acting on the voices of all key stakeholders is imperative if an MDS is to be successfully implemented. Making recommendations for an MDS is a responsibility with implications for future visions and expectations of routine care should such an MDS be implemented or even mandated at some point in the future.