Traversing the data landscape: insights and recommendations from a case study using novel linkage of care home and health data

The insights available from linking routine health data have transformative potential for understanding and improving population health and wellbeing. However, cross-sectoral data linkage in the UK remains challenging, with persistent barriers around governance, interoperability, and data quality.

This Perspectives paper draws on the experiences of the DACHA study (Developing research resources And minimum data set for Care Homes Adoption and use) which linked administrative health and social care records with records from care home software providers for over 700 older adult care home residents, an underserved population in research, in England to build a proof-of-concept minimum data set.

From our learning, we make eight recommendations for researchers, research funders, data owners, data controllers and policymakers, to strengthen future data linkage across health and social care. We recommend: (1) sharing metadata to support transparency and efficient reuse; (2) clarifying purposes for data sharing; (3) streamlining information governance processes; (4) recognising the health and social care system as a research partner; (5) resourcing data quality at the point of collection; (6) acknowledging the work needed to adapt routine data for research; (7) standardising core variables for interoperability; and (8) designing linkage for wider public benefit and safe data reuse.

Implementing these recommendations would help create a more coherent, efficient, and equitable data landscape, realising the potential of existing data to improve care quality, research capacity, and population health.