Blog - Taking Care with Data

Earlier this month, the Alliance asked the ACRC to submit a blog looking at our response to the National Care Service Consultation.

Our response was then featured on the series on "The Future of Social Care" within the Alliance's blog, and was written by Layla Robinson.

What is data?

Data is a collection of information about a thing, a person, anything really. Sports statistics? Data. The application form you just submitted? Data. Hospital records? Data. In this context, we are talking about data as it sits with regards to a person’s health and care – any long term conditions, age, where they live, family, accidents or incidents and so on and so forth.

Why is data important?

Health and care data allows us to see what has happened to people, for example have they had falls, what medication they are on, and therefore what may happen to them in the future so can provide a means of predicting future care needs.

What’s missing?

Typically, care home residents and those receiving care at home are poorly represented in routine data, as shown in our recent briefing on social care data (this link will take you away from our website). This data gap reflects the wider marginalisation of the social care sector and the people who need social care. People in receipt of adult social care are among our most vulnerable citizens, but we cannot systematically improve their care without understanding their needs and patterns of care.

We need better social care data that can be linked to health and other data to improve our understanding of the needs of some of our most vulnerable citizens. Better data and understanding are critical, but have to be used effectively to improve the quality, safety and experience of care in later life.

Data is not a panacea, but good data and improved understanding are key building blocks in making social care better, and a necessity for health and social care integration.

Collecting data from multiple sources can create a comprehensive picture of the needs of each person, illustrating what support (mental, physical, social, adaptations) they need now, or in the future, leading to an improvement in their quality of life.

Although there are many things we can do now to make better use of existing data, closing the social care data gap requires system-wide change:

• Reliable identification of care home residents and those in receipt of publicly funded social care at home (including short-stay residents and short-term recipients)
• Use of a shared unique identifier to link data from different sources
• Access to individual-level, anonymised data to inform policy and planning and for research, including integration of information governance to enable rapid, secure access to legitimate users
• Investment in capacity for large-scale, anonymised linked data analysis of social care data, including support for collaborative working to develop meta-data
• Development and integration of a core national dataset for care homes and care-at-home to support integrated care delivery, service planning, commissioning, policy and research

Currently, the only reliable way to know who is a care home resident is to ask the care home. We would never attempt to measure who was admitted to hospital by looking at GP or ambulance records; hospitals record who is admitted.

 What should the National Care Service do about this?

Improved data collection would help the National Care Service, the people being cared for, and carers. The absolute minimum data needed simply includes who is a care home resident, whether they are a permanent or temporary resident. Importantly, the burden of data collection on care homes has to be minimised, and all data collection has to provide value to the care home itself.

 Who are ACRC, and how will we help?

The Advanced Care Research Centre (ACRC) (this link will take you away from our website) is a research centre focused on care in later life. We are combining areas including medicine and other care professions, engineering, informatics, data and social sciences.

We believe the person in later life should be at the heart of everything we do. We are also keen to work with other organisations, patients, the public, professionals and policy makers across these areas.

Our vision is for high‐quality, personalised and affordable care. We are working to support the independence, dignity and quality‐of‐life of people in later life living in their own homes and in supported care environments.

The ACRC has several areas of work which will improve data infrastructure and extend the understanding of health and social care.

The ACRC will also continue to advocate for improved social care data. Better data itself will not improve the experience of later life and of care, which is why we are collaborating with residents and families, care providers, regulators, the NHS, government and researchers to maximise the value of data while protecting privacy and supporting dignity and independence.