Sharing care home residents’ individual-level data between health and social care: the Data Sharing Partnership project

Introduction: Individuals’ health data is routinely recorded in electronic health records in primary and secondary care. Care homes collect extensive data about residents, and many now use electronic care planning systems. Linked data could be useful in care homes, healthcare and administration, to highlight change in condition, or trends in needs. This project aimed to link individual-level data held in care homes with health data, and co-design dashboards to display this to care homes.

Methods: In the DataLoch Trusted Research Environment, in partnership with NHS Lothian, the University of Edinburgh and care home partners 1) LoCH DaLi (Lothian Care Home Data Linkage project): we identified the partner care homes using the Unique Property Reference Number, and co-designed a dashboard of resident-level health information. 2) Data Sharing Partnership: We worked to ingest social care data, and co-designed a dashboard to display linked health and social care data.

Results: We formed a successful partnership with three care providers (Braeburn Home, Leuchie House, Elder Homes) including four care homes. We established the ethical, governance processes required for data transfer and linkage and the related agreements. Metadata headers from care planning software were sent to DataLoch, and dummy data created. Dashboards were co-created with care home managers using dummy data. The managers provided positive feedback that  the proposed report and dashboard would be useful, particularly with sequential reports. The ethical and governance aspects of sharing individual’s data were discussed with University of Edinburgh and NHS Lothian, and after agreements were agreed and signed, secure data transfer was completed and reports with real data shared with care homes.

Conclusions: The ethical and governance framework at this interface between health and social care is complex. Data sharing has great potential, but needs to be built on strong partnerships and trust between all parties.