Making people visible in care home data

Cian O’Donovan  (University College London, UK)

Data infrastructures expanded to monitor and protect care homes during COVID-19 are not sufficient to ensure adequate care and inform decision making on an ongoing basis argues Cian O’Donovan and colleagues in a new rapid ethics review of data use in the UK care home sector. 

In the UK today, the government does not understand who is in care homes, where they are and for what duration of time. Critical details about the population of people in care homes is missing or is not accurate. 

While covid-19 has accelerated the pace and broadened the scope of data gathering in the UK care sector homes, comprehensive data on the case mix and needs of residents is still missing. 

A new rapid ethics review  from the UK Pandemic Ethics Accelerator highlights areas for ethical and policy action in UK care home data use. Bringing together recent academic research and policy reports, we show how ethical arguments are critical in helping decision-makers understand the values and issues at play in designing better data infrastructures, and the urgency with which these infrastructures must be rolled out. 

One major issue is what health system experts call a denominator problem, after the bottom number in a fraction. This is the number that represents the population of people in care homes. When decision makers don’t know the denominator, they quickly end up with errors in assessment, in the evaluation of services, and in the evidence base for policy. These errors cost lives. 

This is made worse by digital infrastructure within care homes: roughly three in every four care homes are still paper based. And while residents are known to General Practice systems, again, information stored on paper, or in free text digital records cannot be linked to National Health System Digital data or made available to inform local authority or national level decisions. 

The denominator problem is a critical ethical issue in care homes today.

Transforming technical, social and institutional parts of the UK’s care home data infrastructures is urgently needed to fix this problem. But first we need to get the basics of gathering quality data right. 

The review highlights how problems can be addressed through data analysis methods such as data linkage and service integration.

Researcher Jennifer Burton and colleagues have proposed solutions for seven challenges that need to be prioritisedThese priorities, which would go a long way towards solving the denominator problem in care homes, are endorsed by the review.

Further interventions are also needed to change motivations and practices amongst care home operators that currently prevent the right kind of data being gathered and shared. And where implemented, data linkage needs ethical diligence to ensure the values and interests of care home residents, staff and operators are commensurate with whatever work the data is put to.

The risk today is that opportunities to debate the terms of integration and data linkage could be missed. For instance, care sector data was largely absent from the terms of reference of the Goldacre review, which aimed to continue recent momentum in health data linkage. But momentum is a function of speed and direction. As we adapt to living with covid-19, the review finds that we must steer the benefits of transformations so they are equally directed at health and social care settings. 

This is critical if transformations in data are to contribute to reform in a fragmented and forgotten care sector. Our review shows that the denominator problem is a practical starting point the Secretary of Health and Social Care, the Care Quality Commission and industry players can and should commit to today. 

Although detailed plans and timings are still absent from the government’s political agenda, changes in data infrastructure don’t need to wait. 

View the Rapid Ethics Review here

The UK Pandemic Ethics Accelerator is continuing to review ethical implications of data use during the pandemic. If you have comments or feedback on this review, or suggestions for future work, please get in touch with Cian O’Donovan, contact details here.

About the author:

Cian O’Donovan is a researcher at UCL’s Department of Science and Technology Studies working as part of the AHRC-funded UK Pandemic Ethics Accelerator.

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