NHS data - Maximising its impact on the health and wealth of the United Kingdom

Led by Lord O’Shaughnessy and Lord Darzi this white paper from the Imperial Institute of Global Health Innovation reviews the current landscape for NHS data, and makes recommendations for government on how to involve the public in future initiatives to harness the value of their medical data for the benefit of the NHS.

The UK is the best placed large economy in the world to use its health data assets for transformative health, scientific and economic impact. Good progress is being made and all levels of society – including the Government, the NHS, academia, charities and industry – are committed to this agenda. However, there is a risk that this is being done in a piecemeal way. No single organisation is unequivocally tasked with leading the way, and the endeavour has lacked a comprehensive strategy.

Our vision is to provide the public with better, more efficient care, driven by responsible innovation that is underpinned by the UK’s extensive health data. Our goal in creating this paper, therefore, is to fill that gap by proposing a single overarching framework to guide the proper use of the UK’s health data assets. We have tried to answer some of the essential questions this enterprise poses but acknowledge that there are many questions that need further research and inquiry.

Our main message is this: the goal of any strategy must be to deliver benefits to people in the UK, and specifically to the NHS. Benefits to other parties will come as a corollary and are important considerations for the strategy. To achieve the greatest benefit for British citizens and patients, it is essential to adhere to three main principles:

1. Patients must feel a sense of agency and control over what happens to their data;

2. Health data must always be used in a way that is safe, secure, legal and ethical; and

3. There must be a concerted effort to fairly distribute benefits to people across the UK.