The coronavirus (COVID-19) pandemic has focused national attention on the challenges faced by people who use, commission or deliver social care services. Unfortunately, efforts to respond to the crisis have been hampered by the lack of detailed, actionable and accessible data about social care.

The Health Foundation and Future Care Capital have teamed up to explore the key data challenges the sector is facing in the post-COVID-19 era. We have begun by hosting workshops with people who use care services, carers, providers, care tech developers, local authorities, researchers, and membership bodies for providers and for front-line staff. Participants have come from England, Scotland, Wales and Northern Ireland, from domiciliary care and residential care, and included both older adults and working-age adults with a range of needs and experiences.

This blog will explore the findings from the workshops. It comes at a time of immense resource pressure for care providers and local authorities, with many at risk of collapse. Yet participants expressed hope that fundamental reform may finally be approaching, and appetite to explore how data analytics can help meet the needs of people who use or need care services, carers and communities. 

Over 30 workshop participants identified profound structural and cultural challenges that impact how data is collected, shared and used. The participants also described ways that misaligned incentives and misunderstandings – rooted in different perspectives and language – are undermining efforts to build consensus and make collaborative progress.

Unique challenges

Participants made clear that the solutions developed for health care are unlikely to solve the data challenges in social care.

Social care extends into the complicated, intimate arena of daily life. It includes not only supporting people’s health, but help to manage their home, their social and working lives and their support networks. Delivering these services requires a wide range of information – operational data to manage large workforces travelling between locations to deliver multiple services on a strict schedule, and administrative data to manage payments and meet regulatory requirements. Crucially, it also requires information about wellbeing, about how people want to live and what matters to them.

Unfortunately, participants were agreed that the social care system does not currently collect data on what matters to the people who rely on it, such as whether they are meeting their personal goals. Service users and carer participants said that data currently collected by the system is used to limit and constrain their access to care, rather than empower them to live independent lives. Many service users and carers said their opinions were frequently discounted, they often could not access data about them and they often felt dismissed. The issues here are bound up with wider structural issues such as ageism, ableism and the undervaluing of care wherever it happens throughout society.

Fixing social care data is not only a technical challenge. The challenge is to articulate the differences between what care is now, and what it could or should be in the future, so that social care data can help meet the needs and aspirations of a post-COVID-19 society. We need true reform and collaborative coalition building that is centred on the needs of people with disabilities and long-term health conditions, elderly people and carers. This reform needs to recognise the impact care has on the local community, and how it reflects and reinforces our values as a society.

Reconciling mixed motives

Initiatives for change must confront the complex current situation, which can create conflicting incentives for stakeholders, and may complicate their engagement with future improvement work. Providers, local authorities and software developers also identified complex challenges. For example, knowing where care homes are operating over capacity due to massive staff absences, and where they are operating under capacity due to deaths or families removing loved ones, is vital for planning and for managing recovery. While some progress has been made in collecting care home occupancy data through the capacity tracker, the data remains patchy.  

Part of the problem is that the data collection is burdensome. But if capacity is going to be tracked accurately over the long term, our participants said there needs to be recognition that care home occupancy levels are both commercially sensitive information, and critical public health planning information for local authorities. The same local authorities can use knowledge of occupancy levels to negotiate paying lower fees to care homes, or to pressure them to take in people whose needs do not match the home’s capacities. Therefore the homes that can most effectively collect and share occupancy data are discouraged from reporting it honestly.

We need to find common ground. This is complex and requires more than initiatives to build trust. We need a social care system that enables trustworthiness.

Building a shared understanding and reaching consensus

People who use or need care services, people who work in care, and families and communities have been profoundly impacted by the pandemic. There has been trauma and grief, unmet need, and damage to routines, relationships and support networks. Our workshops underlined the conclusion that the social care data system has failed these people, in part because of the lack of historic investment.

While the government was able to quickly mobilise technology providers to address the needs of the health service, it was regrettably not possible to do the same for social care. The death statistics with which we have become increasingly familiar make plain the result. We must do better, and with the threat of a second wave, there is no time to waste.

There is a need and opportunity to invest in digital maturity for social care. This must build skills at every level, establish infrastructure that enables real time analysis, and be informed by a nuanced understanding about how data reflects complex lived realities. The National Data Strategy being developed by the government needs to recognise that health and wellbeing are intrinsically linked to the productivity and resilience of our communities. Critically, this must centre on the needs of the most vulnerable and be linked to fundamental reform and a long-term funding settlement for social care.

We are grateful to workshop participants and interviewees for their expertise, time and candour.

Future Care Capital is an independent charity that drives innovation and improvement in health and social care through its research and policy insights and by bringing together policymakers and practitioners. The charity grew out of the National Nursery Examination which was formed in 1945 and is proud to have Her Majesty the Queen as its Royal Patron. 

Lydia Nicholas is an independent consultant.

Annemarie Naylor is Director of Policy and Strategy at Future Care Capital.

Adam Steventon (@ASteventonTHF) is Director of Data Analytics at the Health Foundation. 

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