New data collection on care homes risks overlooking residents' quality of life, researchers warn
Researchers at the University of Hertfordshire, in collaboration with eight other universities, The Health Foundation and the National Care Forum, have today called for data collected on care home residents in England to give greater weight to quality of life, not just basic health indicators.
In an article published in Lancet Healthy Longevity, the DACHA study research team – led by Claire Goodman, Professor of Health Care Research at the University of Hertfordshire – set out key recommendations to reform care home data collection. They warn that in setting new minimum data requirements, there is a risk of valuing data on health over information about residents’ day-to-day care priorities and quality of life.
The COVID-19 pandemic highlighted the inconsistent nature of data collection about the social care sector; at a time when rapid response was required, gaps in core data exacerbated the challenges created by the pandemic and delayed vital action and support.
The need for standardised data on care homes has since been recognised as a policy imperative by the Department of Health and Social Care, yet there has been little agreement on which data should be collected, and how.
Professor Goodman explains: “Historically, clinicians, researchers and policy makers have made the decisions about what data should be collected, rather than those actually providing and receiving care. Our view is that any agreed data collection must measure what matters most to those living in care homes.
“It’s not enough to know that residents are housed, fed and physically healthy. Unlike other countries with a more medicalised and more centralised system, the UK’s social care model is complex and varied, and increasingly recognises a care home as people’s own home – not a medical setting. To maintain this home-life environment, we need to value people’s quality of life, emotional wellbeing and wide variety of needs”.
The research team also highlight the pressures on care homes, exacerbated by staff shortages. Having been pushed to the brink by the strain of the pandemic, researchers warn that staff should not be burdened further by onerous and repetitive data collection. Digitisation of records, improved data infrastructure, and additional support services are all raised as critical to a successful minimum data set.
“Care home staff already spend considerable time providing data about their services and residents to many different agencies and organisations”, Professor Goodman said. “One of the reasons for developing a minimum data set is to reduce the time wasted on repeating and reformatting data, time that would be better spent delivering high quality of care to those that need it. Therefore any reform must consider how to ease this burden and improve data-sharing across the country’s network of care homes”.
DACHA (Developing research resources And minimum data set for Care Homes’ Adoption and use)is funded by the National Institute for Health Research (NIHR) Health Service Research and Delivery programme (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.
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