Abstract
Introduction: A large amount of data is collected on care home residents to support their daily care. The Data Sharing Partnership (DSP) project linked individual-level data held in care homes with health data, and co-designed dashboards to display back to care homes. This evaluation aimed to gather views and experiences of project participants to understand key processes and learnings to inform the development of an accessible and secure model for the use of individual-level care home data.
Methods: Qualitative methods were undertaken through in-depth semi-structured interviews with DSP project participants; researchers, care home managers, NHS quantitative data analysts, consultant geriatricians, and NHS innovation staff (n=14). Interviews were audio recorded and transcribed verbatim. Transcripts were coded using NVivo. Thematic analysis was undertaken to identify key themes. Ethical approval granted by Edinburgh Medical School Research Ethics Committee (ref 25-EMREC-003).
Results: Six main themes were developed: (i) Balancing innovation whilst navigating complex data governance; (ii) Timeliness of sharing care home data and its importance for residents’ care and health/social care systems; (iii) Operational challenges in implementing shared care home data; (iv) Barriers/Facilitators to achieving the project’s goals; (v) Key learning; (vi) Future work considerations.
Interviewees emphasized the benefits of sharing care home data for resident care and broader health/social care system integration. Governance challenges over data controller responsibilities posed major obstacles, requiring lengthy discussions. Operational barriers included daily pressures in care homes and their fragmented data systems. Facilitators to study goals included partnership working and co-production involving care homes, data analysts, and residents/families. Barriers included slow governance processes delaying project timelines. Key learnings included the importance of partnership working, good communication and early governance engagement. Scalability requires resources and national co-ordination.
Conclusions: This proof-of-principle project identified a wide range of lessons that can inform future data sharing initiatives in the care home sector.