Landmark Study Delivers Standardised Dataset To Transform Care For Older People
A major study led by the University of Hertfordshire has shown how linking care home data with NHS and social care records can improve residents’ lives, strengthen policy decision-making and ensure critical health needs are not being missed.
The DACHA study, a £2.4 million research project funded by the National Institute for Health and Care Research (NIHR) and supported by NIHR ARC East of England, has shown that a minimum dataset (MDS) – which brings together essential information already recorded about care home residents but currently stored in separate systems – can be distilled to provide information useful to plan, deliver and evaluate care.
The project was led by Claire Goodman, MBE, Professor of Health Care Research at the University of Hertfordshire and carried out in collaboration with 10 universities and senior partners including the National Care Forum, The Health Foundation and four NIHR Applied Research Collaborations.
In England, there are more than 1.5 million people aged over 85 and around 370,000 care home residents – and nearly three-quarters of care home residents are over 801.
Yet despite the digitalisation of patient and social care records, there is no standardised approach to recording or linking data between care homes, the NHS, and social care services.
Prof Goodman said: “Most people living in care homes have multiple long-term conditions, such as dementia, diabetes, or heart failure this affects them in different ways. 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.
“Without information on a person’s baseline mobility, how their dementia affects them, recent weight loss, or their individual priorities, clinicians only get a partial picture of what is happening which in turn can affect clinical decision-making.”
The MDS addresses these obstacles by creating a vital bridge that connects information about residents’ health and care needs with their NHS and social care records, providing a standardised dataset that can be understood by all service providers.
It also helps avoid duplication of data collection, reducing burden on care home staff, and enables services to better understand not just medical conditions, but also what helps with residents’ quality of life, preferences and social care needs – making care more person centred.
Prof Goodman added: “The UK holds a wealth of routine health and social care data, but having data is not enough.
“When structured and shared, this everyday data can be a powerful tool that can ensure targeted NHS support to help reduce unplanned hospital admissions, enable personalised care planning, and improve resident wellbeing and safety.
“When professionals are working from the same information from linked datasets, it builds trust between services and a shared understanding that supports collaborative problem-solving rather than attributing blame.
“The MDS is about creating a foundation for meaningful, joined-up care that does not require extra form filling for an already stretched workforce.
“Better data, designed around people’s lives, leads to better care and better use of the NHS and social care resources.”
The content of the MDS prototype – a first in the UK using routine data from both health and social care – was developed through evidence reviews, national surveys, and consultations, linking data from residents’ digital care records with information held about them in NHS and social care databases.
The team tested the prototype in 45 care homes across England, which demonstrated linking data is feasible and valuable. The DACHA study has also developed resources to support large-scale research to continue in care homes, including the creation of the UK’s first care home trials archive to enable use of high-quality data for secondary research.
Key achievements
- Consensus on core measures of an MDS that are valuable for care at every level – individual, service, and organisational: drawing on routine information already held by care homes, hospitals, GPs, and regulators, alongside new measures of cognition, delirium, and care related quality of life
- A pilot MDS was successfully implemented in 45 care homes proving that accessing and linking routine data in this way is both feasible, and can provide resources for others looking to link these data
- First UK care home trials archive: The team created a live resource of anonymised trial data from more than 6,000 residents across more than 300 care homes in England, Scotland, and Northern Ireland. This archive reduces research waste and supports robust, large-scale studies without burdening care home staff
- Supporting policy implementation that is digitising adult social care by working with care home staff and software providers to understand what is needed to implement digital care records that inform care. The finalised MDS and the data directory were shared with the Department of Health and Social Care (DHSC) and NHS England
- Quality-of-life outcome measures were tested as part of the MDS, helping fill a gap in the evidence that everyone recognises is central to the experience of living in a care home. They are being considered for inclusion in NHS Digital’s social care data directory and discussed with the UK Health Security Agency
The researchers said the next steps should focus on expanding the MDS as a key resource for policy makers, care homes and health systems, embedding it in supporting ICSs (Integrated Care Systems) planning and ongoing evaluation, while supporting staff to use the data to plan, deliver and review care.
Rachel Squire, Care Home Manager at Milford Care, said:
“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, rather than learning from one another.
“The DACHA study showed us that using the data we already collect every day – without extra forms or added burden – we can finally share what works, learn from each other, and deliver a personalised care experience for the people we look after.
“By removing the constant pressure to repackage the same information for GPs, local authorities, or the Care Quality Commission, the data is simply taken from the systems we already use. This has given us back time to focus on what truly matters: our residents’ wellbeing, their goals, and their quality of life.
“Moving into a care home is not the end of life – it’s a different chapter. People still deserve purpose, achievement, and joy.
“Being able to share data also gives care homes reassurance that they are on the right track rather than waiting years for an inspection to tell us how we are doing.
“The DACHA study has fundamentally changed the way we connect with and support our residents.”
Liz Jones, Deputy CEO and Policy Director at the National Care Forum (NCF) said:
“Historically there has been a lack of consistency in the collection of people’s medical histories, needs and preferences, creating inaccuracies and duplications that have made it difficult for care homes to truly understand the needs of a person coming into their care.
“The DACHA study has demonstrated the possibility of being able to link data across different systems as well as being able to include key quality of life measures, such as physical health, emotional wellbeing and social life, to support discussion with residents about better care and a better day-to-day experience.
“NCF are proud to have played a part in such an essential programme of research which will, we hope, create better outcomes for people drawing on care, their families and those who deliver care.”
Professor Ann-Marie Towers, Deputy Director, Health and Social Care Workforce Research Unit at Kings College London, and project co-investigator, said:
“As part of the social care system, care homes strive to provide 24-hour care in non-clinical, homely environments, respecting people’s choices, supporting their independence and maintaining their quality of life.
“However, until the DACHA study, most care homes did not systematically collect information about residents’ quality of life or have the tools and language needed to demonstrate their impact on residents’ outcomes.
“By novel linking of care home data with data held about residents by the NHS, the DACHA study has showcased how joined up health and social care data can help commissioners and decision makers better understand the needs of their local populations.”
