A landmark ARC East of England study has found that linking care home data with NHS and social care records can improve residents’ lives, strengthen policy decision-making and ensure that critical health needs are not being missed. The findings highlight the importance of scaling this approach nationally to transform the quality of care in care homes.
In England, around 370,000 people live in care homes, and nearly three-quarters are over the age of 80. Older adults are primary users of both health and social care services. Yet despite the digitisation of an individual’s health and care records, there is still no standardised way to record and link data between care homes, the NHS, and local authorities. As a result, staff often lack access to residents’ full histories and preferences, leading to inconsistent care and missed opportunities to improve outcomes and experiences.
The NIHR ARC East of England DACHA study has shown that a Minimum Data Set (MDS) can bring together information already recorded about care home residents across health, social care and care homes into a single system to support the planning, delivery and evaluation of care.
“Most people living in care homes have multiple long-term conditions, such as dementia, diabetes, or heart failure. Shared data can enable health and care professionals discuss their care and to review the events leading up to crises or hospital admissions and the factors that may have contributed to it.
Professor Claire Goodman MBE, Principal Investigator of the DACHA study
“Without information on a person’s baseline mobility, how their dementia affects them, or their individual priorities, clinicians only get a partial picture of what is happening which can affect clinical decision-making. When data is structured and shared, it can ensure targeted support to help reduce unplanned hospital admissions, enable personalised care planning and improve resident wellbeing.”
Professor Claire Goodman MBE, Principal Investigator of the DACHA study
Led by Professor Claire Goodman MBE from the University of Hertfordshire, the DACHA study brought together five ARCs (East Midlands, Kent, Surrey and Sussex, North East and North Cumbria, South West Peninsula, and Yorkshire and Humber), 10 universities, the National Care Forum and The Health Foundation to develop the UK’s first MDS prototype using routine information from both health and social care databases. The prototype was tested in 45 care homes across England, demonstrating that linking data between services is both feasible and valuable.
The COVID‑19 pandemic highlighted the consequences of fragmented data. Gaps in information left policymakers and clinicians with limited understanding of care home residents’ experiences, needs and priorities, meaning large‑scale public health responses were not fully informed by evidence. By bringing together cross‑sector records through the MDS, DACHA can create more consistent, evidence‑based approaches to delivering good care.
Rachel Squire, Care Home Manager at Milford Care, shares the impact of the DACHA study:
“Unlike the NHS which has one big system that holds information about all patients, care homes exist in small and disconnected pockets, which too often leaves us isolated and competing with one another. The DACHA study showed us that using the data we already collect, without added burden, we can finally share what works, learn from each other, and deliver a personalised care experience.
Rachel Squire, Care Home Manager at Milford Care
“This has given us back time to focus on what truly matters: our residents’ wellbeing, their goals, and their quality of life. The DACHA study has fundamentally changed the way we connect with and support our residents.”
Rachel Squire, Care Home Manager at Milford Care
The study conducted evidence reviews, national surveys and consultations to identify a core set of measures for the MDS. These measures combine routine information already collected by care homes, hospitals, GPs and regulators with new assessments of cognition, delirium and care‑related quality of life, helping to improve the experience of living in a care home.
A care home resident who spent a long time in hospital due to a hospital-acquired infection after breaking her hip during a fall said:
“The DACHA assessments have shown me that I am feeling better and that my care can be measured by how I am involved in it and how valued I feel. I feel much better in myself, and I can measure this by the assessments that I am asked to participate in every four weeks and my own self esteem.”
Anonymous, Care home resident
Highlighting the positive impact of including the quality-of-life data, a care home manager shared:
“The introduction of quality-of-life measures by the DACHA study helped us to move conversation about the future away from preferences for end-of-life care. When we asked residents about the future, we realised many wanted to do many activities that were achievable, such as go shopping, but they also shared lifelong dreams.
Anonymous, Care home manager
“Since these conversations started, we have been able to support a resident to go to a music concert to see her pop idol. Front row tickets and a visit to the stage door have provided a whole new level of looking to the future and enhancing quality of life for her.”
Anonymous, Care home manager
The DACHA study has also developed resources to support large‑scale research in care homes, including the UK’s first care home trials archive, which contains anonymised data from 6,000 people across 300 care homes. The archive was designed to make high‑quality data available for future secondary research.
The study calls for the MDS to be rolled out nationally and used as a core resource for policymakers, care homes and health systems. It recommends embedding the MDS into Integrated Care Systems’ planning and evaluation processes to use the data to plan, deliver and review care. The research team has also released a new video outlining the background and impact of the DACHA study.
The finalised MDS and data directory have been shared with the Department of Health and Social Care and NHS England. In addition, the NIHR has published a synopsis report highlighting the key findings from the study.
