Data holds the key: DACHA study outcomes

The Developing research resources And minimum data set for Care Homes’ Adoption (DACHA) study aimed to compile information about care home residents from multiple sources to support research, service improvement and quality monitoring. Central to the approach was agreement with care home residents, relatives and staff about what matters to older people and how this should be measured.

The study combined existing evidence with care home-generated resident data to develop an MDS that would be relevant and usable for a wide range of stakeholders, including residents, carers, providers, researchers, regulators and commissioners.

A further aim was to reduce the burden placed on care homes by multiple organisations requesting the same information in different formats. The study therefore focused not only on what data should be collected, but also on how it could be used meaningfully every day.

Background

Most long-term support for older people living in care homes is provided by the independent sector. Care home residents typically have high levels of frailty and cognitive impairment, making close collaboration between care homes and the wider health and care system essential.

However, limitations in data sharing between public and private organisations restrict opportunities for co-ordinated care, service improvement and research. Fragmented information systems and complex governance arrangements make it difficult to use existing data fully.

Methods

A mixed-methods design was structured into five work packages (WPs), supported throughout by Patient and Public Involvement and Engagement (PPIE) with people living, visiting and working in care homes across three geographical areas.

The five work packages were:

WP1 – Reviewing the evidence: Two reviews examined outcome measures used in care home research and factors that enhance research productivity in care homes.
WP2 – Creating an archive: A virtual archive of recent care home trials was established to support secondary analysis and optimise the use of existing high-quality data.
WP3 – Exploring MDS elements: A scoping review, realist review and a national survey defined potential MDS content and explored implementation challenges.
WP4 – Linking data: Care home resident data linked with NHS and social care datasets to identify suitable variables for an MDS and to assess data quality.
WP5 – Piloting the MDS: The MDS was implemented at two time points in care homes in three integrated care systems (ICSs), supported by staff interviews and focus groups.

Three national consultations explored how resident information is used by different stakeholders, how quality of life should be measured and whether an MDS would be valued. Additional sub-projects examined data availability in domiciliary care, staff reasoning when assessing wellbeing and conducting research during rapid policy change. What follows are the key findings from each stage.

WP1 – Reviewing the evidence

The reviews identified substantial variation in outcome measurement and questioned the appropriateness of many measures used in care home research.

Key messages:

Research must reflect care home complexity, avoiding studies developed in other settings that waste resources.
Interventions must be feasible and sustainable in busy care environments and not focus solely on the health system’s priorities and need for cost savings.
Studies should consider benefits for residents, relatives and staff, including appropriate recognition and remuneration for participation.
Staff engagement in study design is essential to ensure that interventions can be delivered as intended.
Quality of life is a central concern for older people and must be integrated into research design.
Co-production with residents, relatives and staff improves the relevance and success of research.
Care homes need clear information to make informed decisions about research participation.

WP1 findings relevant to an MDS

There is currently no agreed understanding of what constitutes an MDS for care homes. Existing approaches tend to prioritise clinical and health-focused data over information about everyday care and quality of life.

Key principles for developing an MDS include:

Co-production with care home staff, residents and other stakeholders.
Ensuring it supports care discussions rather than becoming an administrative task.
Attention to data quality, completeness and usability.
Ensuring that staff and residents experience clear benefits from data collection.
Researchers actively involving people living and working in care homes at all times.

WP2 – Creating an archive

The Virtual International Care Home Trials Archive (VICHTA) brought together data from six UK randomised controlled trials, including 5,674 residents in 308 care homes. The archive collates individual participant data, such as age, sex, dementia status, length of stay, quality of life measures, clinical outcomes, medication use and service utilisation, alongside care home characteristics. It enables new analyses and supports the design of future studies.

The archive intends to expand to include international trials. Its use can help reduce unnecessary duplication of data collection in care homes and promote greater consistency in outcome measurement.

WP3 – Exploring MDS elements

International MDS research demonstrates wide variation in the measures used, with a strong emphasis on clinical outcomes and limited attention to measures valued by care homes, particularly quality of life. This heterogeneity limits the ability to synthesise evidence.

The National Survey of English Care Homes showed that homes already collect extensive data on residents’ health, care and support needs, preferences and activities. Many homes use clinical tools adopted from health services but few routinely assess quality of life.

The realist review highlighted the importance of staff motivation, frontline monitoring and embedded digital systems for successful MDS implementation. While standardised data can support commissioners and researchers, additional activities are needed if an MDS is to be trusted by care home staff, particularly in relation to workload, NHS collaboration and digital capability.

Reflections:

Care homes need a clearly defined and practical MDS of outcome measures to support quality improvement and enable comparisons over time.
Residents consistently emphasise
the importance of quality of life, yet this remains poorly measured in routine practice.
Repeating data requests in different formats wastes staff time and limits what can be achieved.

WP4 – Linking data

This work demonstrated that it is feasible to link pseudonymised data from care home digital social care records (DSCRs) with NHS and social care datasets to populate a prototype MDS. Data flows were established between care homes, NHS England, three ICSs and two care home software providers.

A range of resident information is held across DSCRs and statutory datasets and can be combined to create a more complete resident picture. However, information governance processes remain complex and time consuming. Greater standardisation across digital systems would support more effective data use.

Reflections:

Despite public expectations, data is not routinely shared across health and social care to support older people’s residential care.
Technical feasibility alone is not enough – organisational and governance barriers remain significant.

WP5 – Piloting the MDS

The pilot recruited 996 residents from 45 care homes, with 727 residents included in the final MDS. Residents’ DSCRs were linked to statutory health and social care datasets, creating a functioning prototype with associated metadata.

The findings support the feasibility of using quality of life measures in care homes, including the EQ-5D-5L, ASCOT-Proxy-Resident and ICECAP-O. Choice of measure should depend on the intended purpose.

Staff collected structured measures of quality of life, function and cognition using DSCRs. There was evidence that staff used quality of life data to support conversations with residents and to inform care planning.

Commissioners recognised the potential value of an MDS as a basis for discussions about service development and care quality. Building trust in this approach to using the MDS required recognition of the data’s validity and relationships in which care homes were viewed as equal partners.

Implementation was shaped by three interacting factors – the care home context and perceived value of the MDS for care; the relevance of quality of life measures to practice; and the quality and usefulness of the data collected.

Key requirements for implementation include:

Aligning data collection with care home routines.
Providing resources and training to support staff.
Robust IT infrastructure.
Using data to directly influence care planning.
Leadership support within care homes.
Collaborative working between care homes, commissioners and visiting professionals.
Shared understanding of how quality of life measures can be used in practice
and commissioning.

Patient and public involvement and engagement

PPIE shaped the design and conduct of the DACHA study and ensured that the work remained grounded in the experiences of people using and providing care. Contributors highlighted the risks of assuming that data is objective and neutral, and the potential unintended consequences of introducing new data requirements into practice.

Creative approaches were developed to involve residents during COVID-19, including collaboration with activity providers. Involving residents, including those with cognitive and communication impairments, challenged assumptions and strengthened the work. Activity providers gained skills and insights but also described time pressures and emotional demands.

Reflections:

Working with activity providers as research partners offers a promising and inclusive approach to involving care home residents.
The voices of older people are essential for meaningful and ethically grounded research and data development.

Conclusions

The DACHA study provides a major resource for improving care home research and demonstrates the feasibility and value of a prototype MDS linking care home, NHS and social care data. An MDS could support more informed conversations between health and care professionals and help reduce the burden of repeated data requests. Developing practical, person-centred and collaborative approaches will be key to future success.

For more information on DACHA, visit the study website. Comment on this feature or join the conversation to share your thoughts.

Liz Jones is Deputy Chief Executive Officer and Policy Director at NCF. Email: [email protected] Linkedin: @National-Care-Forum

Claire Goodman MBE, FQCNI, PhD is NIHR Emerita Senior Investigator at the University of Hertfordshire. Email: [email protected] Linkedin: @Claire-Goodman