The rich seams of social care data we are failing to mine – now is the time to dig deep
Edmund Stubbs, Research Fellow in Social Care, Care Policy and Evaluation Centre (CPEC),
| LSE: The London School of Economics and Political Science
Social care data in the UK is fragmented across many different sources. Edmund Stubbs, CPEC Researcher, highlights how LSE is making social care measures more findable by collating what is collected, where, and how
Funding and organising adult social care are amongst the most contentious problems in British politics, an issue governments have struggled to resolve. Yet, such care is vital for the wellbeing of hundreds of thousands of people.
The Prime Minister has charged Baroness Casey with speeding up her Commission on Adult Social Care and publishing her findings next summer. Efforts to build long-elusive cross-party consensus are now underway, with hope for continued talks throughout the year.
The challenges are many. For example, Casey describes how carers are left to navigate complex systems alone, asking not for miracles, but for clarity about what support exists and how to reach it. Policy decisions to improve these systems require evidence which requires data that is findable and accessible, long a challenge given the diverse and often hidden datasets spread across the country.
That is where our social care data catalogue, CASCID, comes in. It is not a store of personal care records. It is a map: a searchable guide to the anonymised social care data that exists for research and planning, showing what each source contains and advising how to access the data.
Researchers abroad envy how easy UK health data is to find and use.
Social care is the opposite: what’s useful is scattered across councils, providers and research studies.
We began where you might expect, cataloguing government-led routine data collections and national surveys collecting data from service users, carers or paid care staff. But we looked deeper, examining national longitudinal surveys, where social care is not necessarily the primary focus. They cover thousands of participants over many years, making them a rich source of insight.
Such data can be richer than the most meticulous local authority records, capturing patient experience and wider life impacts; often including demographic, economic and social measures. One question such as “Are you a carer for a family member?”, “Do you receive care at home?”, or “Can you wash and dress yourself?” – unlocks information about people needing, receiving or providing care. With one social care identifier, researchers can draw on the entire questionnaire, encompassing employment, mental health, income, ethnicity, health behaviours, childhood experiences, and much more.
We responded to feedback from policymakers by identifying whether datasets capture information on region, local authority, or the first half of postcodes; enough to map need and plan services. Additionally, we incorporated data on marginalised groups and protected characteristics to maximise value for understanding inequalities.
A single unified health and care record is under discussion in the NHS Modernisation Bill. Such a record is built from the routine data generated when people receive care so will never contain what big national surveys capture: how people experience care or unpaid care that families provide. As a result, a vast depth of social care data remains beneath the surface of the UK landscape, waiting to be utilised.
The CASCID catalogue is a mineshaft to this data, helping researchers and policymakers dig deep and uncover new levels of understanding. Let’s make sure we utilise it at this important juncture for the most beneficial social care reform.
The project has been funded by the National Institute for Health and Care Research (NIHR) School for Social Care Research (SSCR). Current LSE SSCR projects cover a range of themes including carers, AI and care economics.
Click here to visit LSE’s Catalogue of Social Care Data (CASCID).
The author would like to thank his CASCID colleagues, Raphael Wittenberg and Dr Derek King, for their contribution.
The project has been funded by the National Institute for Health and Care Research (NIHR) School for Social Care Research (SSCR). Current LSE SSCR projects cover a range of themes including carers, AI and care economics.
