Report by the Tony Blair Institute: “We are at a pivotal moment where the convergence of large health and biomedical data sets, artificial intelligence and advances in biotechnology is set to revolutionise health care, drive economic growth and improve the lives of citizens. And the UK has strengths in all three areas. The immense potential of the UK’s health-data assets, from the NHS to biobanks and genomics initiatives, can unlock new diagnostics and treatments, deliver better and more personalised care, prevent disease and ultimately help people live longer, healthier lives.
However, realising this potential is not without its challenges. The complex and fragmented nature of the current health-data landscape, coupled with legitimate concerns around privacy and public trust, has made for slow progress. The UK has had a tendency to provide short-term funding across multiple initiatives, which has led to an array of individual projects – many of which have struggled to achieve long-term sustainability and deliver tangible benefits to patients.
To overcome these challenges, it will be necessary to be bold and imaginative. We must look for ways to leverage the unique strengths of the NHS, such as its nationwide reach and cradle-to-grave data coverage, to create a health-data ecosystem that is much more than the sum of its many parts. This will require us to think differently about how we collect, manage and utilise health data, and to create new partnerships and models of collaboration that break down traditional silos and barriers. It will mean treating data as a key health resource and managing it accordingly.
One model to do this is the proposed sovereign National Data Trust (NDT) – an endeavour to streamline access to and curation of the UK’s valuable health-data assets…(More)”.