Blair Institute proposes NHS Data Trust for biotech and AI advancements in health care

The Tony Blair Institute’s proposal for the NHS Data Trust aims to leverage anonymized NHS data for biotech and AI advancements.

A recent report from the Tony Blair Institute for Global Change proposes the establishment of a novel public–private entity, the NHS Data Trust, aimed at capitalizing on the commercial potential of anonymized NHS medical records. This initiative, outlined in the joint report titled, “A New National Purpose: Leading the Biotech Revolution” from Sir Tony Blair and former Tory leader Lord William Hague, aims to advance the biotech and artificial intelligence (AI) sectors while fostering the development of innovative treatments for patients.

In addition to proposing the creation of the NHS Data Trust, the report highlights the need for investments in personalized AI doctors and the introduction of personal health accounts (PHAs). The envisaged PHAs would empower users to efficiently manage their health data through a cloud-based platform linked to the NHS App. This platform would provide various functions, including appointment bookings, access to medical records, data from wearable technologies such as smart watches, and treatment management.

The report emphasizes the need to address structural challenges hindering the effective utilization of health data in the UK, including issues like data fragmentation, suboptimal data quality, and data formats that frequently mean it is not ‘AI ready.’ The NHS Data Trust, majority-owned by the NHS with additional investments from private companies, would be expected to effectively manage these issues.

Ensuring transparency, the governance model of the NHS Data Trust would prioritize patient data safety and align its operations with public health objectives rather than private capital interests. Strict legal protections are proposed to ensure data are never sold to third parties and are always anonymized. Research entities would gain access to anonymized data in exchange for financial returns, which would then be reinvested into the NHS, potentially through direct payment or cost-price access to resulting medicines.

There is already a precedent for giving controlled access to anonymized data to third parties through the UK Biobank program, which helps to advance medical research with its extensive genetic and health-data collection. Similarly, the Our Future Health program utilizes NHS resources to enhance disease understanding, and improve early detection and prevention approaches.