What do we want? Useful data. Where do we want it? Care homes – A case for a care home minimum data set.

Dr Gizdem Akdur, Research Fellow, The Centre for Research in Public Health and Community Care (CRIPACC), University of Hertfordshire

Integrated Care Systems (ICS) in England and the recognition of the role of social care as an essential part of care provision for older people underline the need to develop reciprocal systems of working between the NHS and care homes. There is, however, no agreed framework in England for collating, sharing and interpreting data collected by the organisations involved in supporting care homes.

Integrated Care Systems (ICS) in England and the recognition of the role of social care as an essential part of care provision for older people underline the need to develop reciprocal systems of working between the NHS and care homes. There is, however, no agreed framework in England for collating, sharing and interpreting data collected by the organisations involved in supporting care homes.

The NIHR funded DACHA study (Developing research resources and minimum data set for care homes’ adoption and use) is a collaboration of care home researchers from nine universities based in five Applied Research Collaborations (ARCs), care home organisations and providers, and NHS practitioners. The project began in November 2019, and its aims are:

  • To establish what data need to be in place to support research, service development and uptake of innovation in care homes
  • To synthesise existing evidence and data sources with care home generated resident data to deliver a minimum data set (MDS) that is usable and authoritative for different user groups (residents, relatives, business, practitioners, academics, regulators and commissioners)

A minimum data set (MDS) is a standardised assessment tool that shows a comprehensive account of long-term care residents and their care. We are currently reviewing the evidence on how care home residents’ needs are assessed and measured and what supports the introduction of new interventions like an MDS into care homes. We are also developing a care home trial repository to optimise the use of high-quality research data. The second half of the study is working with The Health Foundation to identify care home residents in routine health and social care data. In DACHA’s later stages, learnings from previous work packages will be pieced together to create an electronic prototype of a UK-centric MDS, which will then be piloted and tested in care homes.

Patient and public involvement and key stakeholder engagement are key to the study development and delivery. Public engagement, care home-based discussion groups, regional consultations, and technology implementation are threaded through the study. What is very clear is that different groups prioritise different types of information. We expect that the resident and staff groups in care homes will provide a much needed critical commentary for the project, and we will have ongoing consultations with people who have experience of supporting family in care homes.

Timeliness of the study

The project could not be timelier considering the global pandemic that we are in the middle of, which has had a disproportionate impact on the adult care home population. Several ‘what ifs’ may come to mind. If a care home minimum data set (MDS) had been in widespread use in the England during the COVID-19 pandemic, we would have known and understood more about care home mortality, and about health and social care needs of the adult care home population during these challenging times. It could have been used as a tool for research to generate new evidence to support the hard work of frontline health and social care professionals during the pandemic.

We have seen obstacles and delays, especially during the COVID-19 emergency, in responding to the needs of care home populations in England; this is often due to a communication gap between care home staff, managers, NHS staff, and policy makers. The barrier is not the lack of data about care home residents per se, but how we organise and use data to deliver better support to those working, living and dying in care homes. The DACHA study has been exploring and addressing the gaps in the organisation, sharing and repurposing of data, discontinuities in data collection, and the use of disconnected non-standardised approaches in different care homes. The goal is to help ensure that care home residents’ needs are known by health and social care systems in England.

Applying a feasible form of MDS in the UK is even more pertinent now. We have lots to learn from the countries whose health and social care systems include a form of MDS, usually mandated by state or federal law. The DACHA study is projected to last four years. We welcome the opportunity to discuss the study in this rapidly changing area of research and hear how innovations in care homes could inform the work.

For more information on DACHA, you can visit the project page on ARC East of England, and contact the project lead, Prof Claire Goodman, at c.goodman@herts.ac.uk.

Follow us @DACHA_Study

Research Management Team

University of Hertfordshire: Prof Claire Goodman, Dr Gizdem Akdur, Lisa Irvine, Massirfufulay Musa; University of Cambridge: Dr Sarah Kelly, Andy Cowan; University of East Anglia: Dr Guy Peryer, Dr Anne Killett, Priti Biswas, Jess Blake; University of Exeter: Dr Iain Lang, Dr Sarah Brand; University of Glasgow: Dr Jenni Burton; University of Kent: Ann-Marie Towers; University of Leeds: Professor Karen Spilsbury; Newcastle University: Professor Barbara Hanratty; University of Nottingham: Professor Adam Gordon; National Care Forum: Professor Julienne Meyer, Liz Jones; The Health Foundation: Arne Wolters, Adam Steventon; PPI Representative/Alzheimer’s Society Research Network Volunteer: Sue Fortescue

Funding Acknowledgement and Disclaimer

This study/project is funded by the National Institute for Health Research (NIHR) Health Service Research and Delivery programme (HS&DR NIHR127234) and supported by the NIHR Applied Research Collaboration (ARC) East of England.

The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.