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.' 

Risks and harms 🛑

The UK NHS patient medical history data store is seen to pose risks of privacy breaches, unauthorised access to sensitive health information, potential discrimination based on medical history, and erosion of patient trust in healthcare confidentiality if not properly secured and managed.

Transparency and accountability 🙈

The NHS patient medical history data store has been criticised for poor transparency across a number of areas.

• Limited public awareness of data collection and usage practices

• Lack of clear opt-out mechanisms for patients

• Insufficient detail on which third parties can access the data and for what purposes

• Inadequate disclosure of data anonymisation and security measures

• Unclear policies on data retention periods and deletion processes

• Limited patient access to audit trails showing who has viewed their records

• Insufficient transparency around AI/algorithm use

• Lack of regular public reporting on data breaches or misuse incidents.

Research, advocacy 🧮

• Doctors Association UK/Foxglove. THE NHS FEDERATED DATA PLATFORM AND PALANTIR. 7 KEY RISKS (pdf)

• OpenDemocracy/Foxglove. Save our NHS data

• Foxglove. No Palantir in our NHS

• Dr Bhatti.com. An Open Letter to the Government regarding GPDPR

Fact checks 🚩

• Full Fact (2024). Out-of-date warning on NHS data circulates again