Methods, governance, ethics, and the views of patients and stakeholders.
The primary care electronic health record, held by GP practices, is one of the richest NHS datasets. It covers the whole lifespan of many patients, is richly coded, highly accurate, and includes diagnostic and prescribing information. Such data could inform better ways of working that provide a win-win-win for patients, doctors, and healthcare service managers. As independent data controllers, GP practices are rightly concerned about sharing data without appropriate justification and assurances about how the data will be used. Diligent and competent consideration of the technical requirements, governance, ethics and stakeholder views is needed to realise the indirect benefit of the primary care electronic health record.
Primary Care Sheffield is collaborating with the South Yorkshire Integrated Care Board and experts from the University of Sheffield and Data Connect to implement an approach that delivers and maintains a respectful and secure data environment where approved users can study primary-care data in combination with data from other healthcare services. Studies would only be approved if they can provide actionable insights that could improve the delivery of primary care in the region. This regional initiative is being designed for scalability – scaling out rather than scaling up, to minimise organisational hierarchy and maximise GP-practice control.
What we’ve accomplished, together:
In the summer of 2024, we ran workshops both with primary-care professionals and with members of the public. We asked GPs, Caldicottt Guardians, and clinical, medical and operations directors, about concerns, aspirations and proposals for a secure data environment. We asked members of the public in Sheffield for their thoughts and feelings about sharing healthcare data for research. The image above shows some of the contributions made by members of the public, and below, a summary of contributions from the primary-care professionals. The full, summary infographics can be seen by following these links: the public, the professionals.
Guided by the contributions of the public and primary-care professionals, we’ve already made substantial progress developing the technical solutions and appropriate governance of a respectful and secure data environment.
Explore the Yorkshire and Humber SDE.
Explore the South Yorkshire Integrated Care System: Data and Insights Strategy 2024-2026.
Role of PCS|Research
Utilising PCS data for research will require technical solutions for data extraction from the primary care electronic health records, alongside clear, legally-informed governance for safe data transfer. Using the nine practices that they directly manage, PCS will promote the benefits of sharing primary care data to link it with secondary care (e.g., hospital) data, and will promote solutions developed through this pilot study to include more practices across Sheffield. This will involve co-production between data controllers (GP practices and their Caldicott Guardians), patients, and regional stakeholders to overcome technical and governance challenges.
This research has been funded by the Yorkshire & Humber Secure Data Environment (YHSDE) and has been delivered through Data Connect (sheffield.ac.uk/data-connect) at the University of Sheffield. If you would like to find out more about this research, or contribute to research about health, please contact dataconnect@sheffield.ac.uk.