NHS patient medical history data store

The NHS General Practice Data for Planning and Research (GPDPR) is a system that collects, stores and manages data from General Practitioners (GPs) across England. 

In its own words, it is 'used every day to improve health, care and services through planning and research in England, helping to find better treatments and improve patient care.' 

Operator: National Health Service (NHS)
Developer: NHS Digital
Country: UK
Sector: Govt - health
Purpose: Centralise patient records
Technology: Database
Issue: Privacy; Security
Transparency: Governance; Marketing; Privacy

Risks and harms 🛑

In May 2021, the Financial Times reported that NHS Digital was quietly planning to pool sensitive personal medical records on to a central database and make them available to third parties. Patients were given six weeks to opt out of the General Practice Data for Planning and Research (GPDPR) programme.

The news prompted an immediate and broad backlash from medical professionals, digital rights activists, and politicians accusing the government of inadequate transparency about the existence and nature of the programme, in particular about which types of organisations would have access to the data and what they would able to do with it. 

The backlash resulted the opt-out period being extended for two months. However, despite widespread concerns about poor transparency, the UK government stated it would not write to individual patients informing them about the programme.