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

ABSTRACT

Objectives

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.

Methods

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.

Results

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three regional data sources), five future potential, seven limited potential, and three not considered further (outdated or lacking social care data).

Conclusion

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.

KEYWORDS:

• Accessibility of data
• availability of data
• future recommendations for social care data
• health and social care linkage
• quality of data
• social care
• social care data
• utility of data for research

Article highlights

• Social care data are rarely used in HTAs in the UK, despite the importance of social care to the NHS

• This may reflect the limited availability of high-quality and accessible social care data across the UK suitable for research

• We employed a protocol-driven approach to identify, characterize, and appraise secondary sources of UK social care data suitable for research purposes

• We found six data sources of social care data (three national; three regional) with high potential for research, and five sources with future potential (one national; four regional)

• Key barriers or challenges to conducting research using the high potential sources included data access processes/methods, limited published evidence of prior use, and limited scope of data capture/lack of linkage to health and other data

Declaration of interest

D Mendes and S Collings are employees of Pfizer and hold stock or stock options of Pfizer.

R Wood and M Seif are employees of Adelphi Real World; Adelphi Real World received funds from Pfizer to conduct this research.

The authors have no other relevant affiliations or financial involvement with any organization or entity with a financial interest in or financial conflict with the subject matter or materials discussed in the manuscript apart from those disclosed.

Reviewer disclosures

Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Author contributions

All authors were involved in project conception and design, implementation of research, interpretation of findings, manuscript development, and the decision to submit the article for publication.

Acknowledgments

The authors thank Eunmi Ha, Joe Thomas and Vicky Banks (all former employees of Adelphi Real World) for their contributions to the initial research and interpretation of findings; Tendai Mugwagwa and James Campling (employees of Pfizer Ltd.), and Susan Donaldson and Siobhan Ainscough (both former employees of Pfizer Ltd.) for their contributions to the conceptualization and interpretation of findings; Rachel Russell (of Pfizer Ltd.) for her contributions to the conceptualization, interpretation of findings and critical review of this paper; Derek Ho for drafting and finalizing the paper.

Supplementary material

Supplemental data for this article can be accessed online at https://doi.org/10.1080/14737167.2023.2274843

Additional information

Funding

This study was funded by Pfizer Ltd. Medical writing and editorial support were provided by Derek Ho PhD (ScriboMedica Ltd) and was funded by Pfizer Ltd.