In a new report published today, the Tony Blair Institute for Global Change has proposed the creation of a ‘National Data Trust’ as a commercial entity, with majority and controlling ownership by the Department of Health and Social Care (DHSC) and the NHS, as well as investment by industry partners. The Data Trust is intended to be a critical step towards unlocking the transformative potential of the UK’s health data to improve health outcomes, drive scientific discovery and spur economic growth.
In response, Professor Andrew Morris, Director of HDR UK, said:
“We stand on the brink of a new era in healthcare, harnessing the power of AI and the UK’s health data will undoubtedly transform healthcare, reinvigorate our economy and importantly, save lives.
“The UK’s health data holds enormous value. The best performing health systems internationally harness health data to transform and improve the quality of healthcare, to power research and innovation, and to support public health and efficient running of health services. The ‘National Data Trust’ proposed for England by the Tony Blair Institute aims to solve challenges that many of us in health data research recognise all too well. Other models and structures are also possible, and I welcome the debate it will definitely generate.
“Building on existing successes like the NHS Research Secure Data Environments Network, OpenSAFELY and our own work at Health Data Research UK will be key. We have seen remarkable progress in the last four years in the use of health data for research – we are now able to run studies on 67 million people in the UK to answer important societal questions.
“Whichever direction we go, public support is absolutely vital. Industry access to patient data tends to be where surveys suggest the public have more doubts. Yet it is through life science companies that we will see most clinical trials of new treatments and the potential of AI for health realised, enabling economic benefits to flow back to the health service. We therefore need a new social contract to enable this in a trustworthy way.
“Ownership, oversight and openness are going to be the points to get right. We need clarity on who benefits and how, if public trust is to be earned and retained.
“It’s great that attention is being focused on this issue. If this proposal results in a renewed public discourse on the best way to take things forward, it would be a very positive step. Today’s research is tomorrow’s care. It is essential we get this right.”
