Testing a Minimum Data Set in Care Homes in England
Research type
Research Study
Full title
Title of the research: Testing a Minimum Data Set in Care Homes in England (Work Package 5 of the DACHA study) Title of the overarching project: Developing research resources and minimum data set for care homes' adoption and use (DACHA)
IRAS ID
311711
Contact name
Claire Goodman
Contact email
Sponsor organisation
University of Hertfordshire
Duration of Study in the UK
1 years, 6 months, 1 days
Research summary
Structured approaches to data in long-term care are well established in other countries. The Minimum Data Set (MDS) in the United States is mandated for all residents in receipt of medical funding for nursing home placement. The International Resident Assessment Instrument (interRAI), initially derived from the MDS, is now in use in multiple countries and is mandatory in several, including Canada, France, Belgium, and Switzerland. Using these datasets has been reported to enable more coordinated patient care, to support governance and audit, to ensure appropriate remuneration for services, and to enable service design, planning and policy decisions.
The DACHA study (Developing resources And minimum data set for Care Homes’ Adoption and use) is a programme of research to evaluate internationally used minimum datasets and compare these to the data already routinely collected and available for care home residents, before developing and testing a minimum dataset which will suit the care home sector in England. The study consists of five packages of work, the first four of which have informed the development of a prototype MDS.
The fifth work package is a mixed-methods longitudinal pilot of the MDS, including a protocol for integrating these with native data from NHS and social care databases to form the full dataset, for older adults living in care homes in England. The study will assess the feasibility of collecting data directly from care homes with digital care records and matching this to routinely collected health and social care data to populate a complete MDS, assess the quality of the MDS data, evaluate the usefulness of the matched MDS data to stakeholders, and assess potential barriers and facilitators to wider implementation of the MDS. The study will recruit residents from 60 care homes, with data in the MDS extracted and integrated with routine data at baseline, 4 and 9 months.
Lay summary of study results: The COVID-19 pandemic showed that we lacked basic information about how many people lived in care homes. Information was not collected in the same way or was easily shared between different organisations responsible for residents’ care. The Developing resources And minimum data set for Care Homes’ Adoption study aimed to improve how research is done in care homes and to provide a single source of information (minimum data set) about residents for people working in and with care homes.We completed two evidence reviews about doing research in care homes and combined information about 5600 residents from completed studies to be used in future research.
A survey of care homes in England told us what care staff recorded in residents’ notes. A review of how minimum data set were used internationally and their content were used to inform the content of the planned minimum data set and how to support staff to use it. We asked people with different experiences of living, working and visiting care homes about the information they would need from an minimum data set.
To create an minimum data set, with information about residents’ health and care, we linked information from digital care home records for 727 residents, with their information held in routine National Health Service and social care data sets. We added additional measures, including ones to capture residents’ quality of life to care home records. We also did exploratory work on developing an minimum data set for people receiving care at home.
We showed how important it is to use tools and research methods that truly reflect what it is like to live and work in a care home. Plus, the involvement of care home staff in planning research reduces the risk of study failure. The study minimum data set could reduce duplication and fragmentation of residents’ information supporting better care, and staff were able to complete the additional measures. Further work is needed to improve how information is linked, especially to general practitioner records, how staff receive feedback and help staff to use minimum data set information to make decisions. A future priority is to develop an minimum data set that includes people receiving care at home.
REC name
London - Queen Square Research Ethics Committee
REC reference
22/LO/0250
Date of REC Opinion
7 Jun 2022
REC opinion
Further Information Favourable Opinion