Cian O’Donovan: Getting the basics right in digital social care transformations

Detailed plans and timings were absent from the government’s announcement in September on new taxes to fund social care reforms. So far the plans focus almost exclusively on funding mechanisms and personal financial protections and do little to address longstanding structural issues such as inadequate data and technology infrastructures in the sector. Improvements to data infrastructures don’t need to wait, but foresight and consideration is required. Better data for social care does not simply mean more data. Increasing digital maturity and capabilities in the sector are also a must.

Social care policy responses to covid-19 have shown how quickly new data gathering practices and infrastructure can be rolled out. For instance, the adult care home Capacity Tracker has become the de-facto way of monitoring thousands of care homes in England and Wales. Initially built to help administrators, case workers and families find available beds from an often-bewildering choice of thousands of residential care providers, in the early months of covid-19, the tracker was adapted to monitor bed capacity and levels of infection nationally. This data influenced decisions about how resources such as protective equipment were distributed to care homes in England and Wales.

Data Saves Lives, the government’s recovery strategy for data in health and social care lauds the Capacity Tracker as one of the pandemic’s data success stories. But as a piece of infrastructure, it remains unfinished and the full impact of its use remains under-researched—for instance impacts on the well-being of residents and the burdens it places on staff. 

The Capacity Tracker is a market instrument designed to efficiently discharge people leaving hospitals and entering community care. One major problem with this is that the tracker counts stocks of beds and resources. What’s missing is information about who is flowing through the system, details about residents in each home, where they’ve come from, and how healthy are they. 

Health systems experts call this an after the bottom number in a fraction. It happens in the care sector because there is significant uncertainty about the care and wellbeing of individuals and groups within the overall care population. If decision makers don’t know the denominator they quickly end up with problems in the precision of assessment, the evaluation of services, and in the evidence base for policy. 

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 GP systems, information stored on paper, or in free text digital records cannot easily be linked to NHS Digital data or made available to inform local authority or national level decisions. 

The good news is that work is under-way to solve the denominator problem, triangulating existing population and public health data, with systematic evidence-gathering at a community level and across social groups: trials for minimum data sets can potentially produce data in care homes in ways that matter to users and carers and build human capabilities and frameworks for collating and interpreting these data; experimental testbeds like Care City and research projects like Supporting Adults Social Care Innovation, show how innovation in care practices and procedures, coupled with wider organisational and institutional changes in the sector, makes data useful and usable to staff and residents on the ground. 

These approaches redefine what better care data is by complementing static measures of system performance with data on the context of care in the community—interpreting population and clinical data in these contexts and contributing data on low pay, high staff churn and blocks on migration that currently hamper the sector; and making these data useable for statutory responses to inequality and deprivation. 

Yet social, political and institutional hurdles remain. Critical will be aligning advances in care home data with broader transformations across health and social care, such as service integration, between health and social care and further linkage of datasets across public sectors and local authorities. An integrated system would allow detailed monitoring of staffing levels, sickness levels and other data points for care staff and residents. 

But the technical task of linking datasets, a trend accelerated during covid-19, 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. This is important because data are imprinted with the value judgements of those choosing what data to collect, and those consenting to that collection. Also, values guiding data collection and interpretation in clinical settings often differ from those prioritised in care homes and other social care sites. 

The risk today is two-fold. First, that in a rush to lock-in the data “gains” made during covid-19, the basics digital needs of the care sector are neglected. There is a real danger that integration and interoperability are seen as the key goals—whereas for thousands of care homes simply getting the basics in place must be the priority. Second, opportunities to debate the terms of 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, there is an opportunity to steer the benefits of these 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. Increasing digital maturity and capabilities in the social care sector must be a pre-condition of increased integration and interoperability. These are vital if social care is going to share any value created by broader digital transformations.

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 AcceleratorTwitter: @cian

Competing interests: none declared