Social care data in the UK; current landscape, challenges, and future recommendations

Social care in the United Kingdom (UK) refers to care provided due to age, illness, disability, or other circumstances. Social care provision offers an intermediary step between hospital discharge and sufficient health for independent living, which subsequently helps with National Health Service (NHS) bed capacity issues. UK Health Technology Assessments (HTAs) do not typically include social care data, possibly due to a lack of high-quality, accessible social care data to generate evidence suitable for submissions. We identified and characterized secondary sources of UK social care data suitable for research (as of 2021). Sources were identified and profiled by desk research, supplemented by information from custodians and data experts. We identified twenty-one sources; six high potential (three national, three regional data sources), five future potential, seven limited potential, and three not considered further (outdated or lacking social care data). Despite identifying numerous sources of social care data across the UK, opportunities and access for researchers appeared limited and could be improved. This would facilitate a deeper understanding of the clinical and economic burden of disease, the impact of medicines and vaccines on social care, enable better-informed HTA submissions and more efficient allocation of NHS and local council social care resources.