Use of Patient Data

Opened the debate

The Department of Health and Social Care's plan to open GP medical records to pharmaceutical companies, universities, and researchers is described as a shambolic roll-out with significant privacy concerns. The programme involves over 55 million datasets containing sensitive information like psychiatric conditions, drug or alcohol abuse history, sexually transmitted infections, and pregnancy terminations. Despite the potential benefits for healthcare innovation and tackling serious diseases such as cancer, dementia, and diabetes, the lack of transparency regarding data usage, user identification, and safeguards is alarming. The lead MP highlights IT failures in previous similar initiatives, emphasising that this new programme must not be trusted with carte blanche over privacy.

Government Response

I recognise the chequered history of failed IT initiatives in the NHS, but argue that high-quality security and privacy can coexist with effective data usage to save lives. The current GP data service is outdated and needs replacement; the new programme aims to reduce bureaucracy for GPs, strengthen privacy, replace numerous data collections, and allow better comparisons within the NHS. The Minister underlines a need for updating how we approach health data, placing security and privacy at its core while unlocking insights in data. He highlights OpenSAFELY’s role during the pandemic and plans to use trusted research environments (TREs) instead of pseudonymised data dissemination. All data will be accessible only through secure TREs with rigorous approval processes for legitimate purposes. An opt-out system is being strengthened, and further consultation is planned to ensure robust privacy measures while maximising benefits from health data. The implementation date has been delayed until 1 September.