Researchers at the University of East Anglia have today called for data collected about care home residents to give greater weight to quality of life, not just basic health indicators.
Every day, people working in care homes collect data on their residents – from how many medicines they have been prescribed to the number of falls and illness figures, often having to give the same information to different people many times over.
But new research led by the University of Hertfordshire and involving collaborators at UEA sets out key recommendations to reform care home data collection.
Dr Anne Killett, from UEA’s School of Health Sciences, said: “The Covid-19 pandemic highlighted the inconsistent nature of data collection about the social care sector. And how, 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, yet there has been little agreement on which data should be collected, and how.”
The UEA team worked with residents and staff at Chiswick House in Norwich to find out what’s important to them when it comes to the data that’s collected about them.
Dr Killett said: “All too often people living in care homes are not directly consulted. Instead, clinicians, researchers and policy makers have made the decisions about what data should be collected.
“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.
“So we worked with care home residents, so they could keep the project focussed on what is important to them.
“And we found that any data collected should capture information about residents’ quality of life and what happens in their day-to-day lives for emotional wellbeing.
“This is important as there is a push to improve data-sharing across the network of care homes across the country. There are potentially great rewards form this, if the burden on care staff of providing information could be streamlined, but this must not be at the cost of what is important to residents.
“Any agreed data collection must measure what matters most to those living in care homes,” she added.
Prof Claire Goodman, from the University of Hertfordshire said: “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 the administrative burden of 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”, said Prof Goodman.
“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.”
‘Developing a minimum data set for older adult care homes in the UK: exploring the concept and defining early core principles’ is published in the journal Lancet Healthy Longevity.