We need an urgent national debate and action on healthcare data

September 2018

By Greg Allen, Chief Executive, Future Care Capital

Just how could we use the value of NHS and healthcare data to improve the health of our nation? The NHS has amassed unique health data over 70 years.  There are opportunities and challenges in harnessing this data to help bolster a cash-strapped NHS.  Despite some local progress in this area, the UK is playing catch-up and it’s time for a proper national debate and action.

The rest of the world has already woken up to the potential of data.  China has declared promotion of the use of big data in healthcare a national priority.  Israel has said it will invest the equivalent of $287m to make available its population’s health data to researchers and private companies.

At Future Care Capital (FCC), we believe that, if we get this right in the UK, we can achieve greater societal benefit in the long run.  The challenge is clear.  Data has the potential to improve the efficiency and effectiveness of health research and development as well as healthcare delivery.  NHS bodies already recognise this potential. Some are currently exploring ways to harness its social, economic and environmental value whilst addressing the technical, legal, ethical and cultural barriers to delivering the potential benefits.

So, will the Government agree to develop an action plan to harness the value of NHS data?  On 6th September, a House of Lords debate will raise the prominence of this important national opportunity.  What does this mean for the public and for patients?  Well, data can be used to gain insights into how people respond to different treatments.  It allows medical professionals to forward plan and buy the services patients need.  It also enables research for the NHS to discover new cures and lifesaving treatments.  All good, yes? But what about the ethical and safeguarding issues?

FCC has previously considered these issues.  In our first policy paper we talked about ‘intelligent sharing’.  We stressed that the UK needs to blaze a trail in the development of ‘data ethics’ to proactively build trust whilst safeguarding individuals.  Of course, recent high-profile cases haven’t helped the case for expanding the use of healthcare data.  The deal between Royal Free and Google’s DeepMind raised many concerns about the robustness of privacy controls. So, any use of data must be based on a robust framework, and the public must be informed and content with the approach.

This week, the Government launched its code of conduct for data-driven health and care technology, but it does not change any existing regulatory requirements and it is voluntary.  So, the question remains: how can we expect NHS bodies to handle third party access to our healthcare data in a consistent manner in the absence of a mandated approach?

NHS Digital does not currently capture information on the data at regular intervals about healthcare data sharing by local organisations.  So, there is a lack of understanding surrounding which NHS bodies are being approached by third parties and asked to provide access to the healthcare data they control.  We don’t know which datasets are of interest to third parties or, even, what type of third parties are interested – let alone the implications for the social and economic value generated.

At the same time, the value of healthcare data is appreciating faster than the rate of increase in healthcare costs, and the NHS controls broad-ranging data assets. So, the Lords’ debate comes at a time when there is no clearly agreed national strategy for the NHS and UK PLC to benefit from providing access to the data the NHS controls.

FCC has previously called for the Government to explore the scope to place healthcare data assets controlled by NHS bodies on the national balance sheet. We hope the Chancellor will reflect on this in his Autumn Statement.

Our next FCC policy paper will go further and explore the potential to leverage the UK’s unique health data assets through the establishment of a Sovereign Health Fund.

But, for now, more weight needs to be given to unlocking the potential of healthcare data.  Will the Government support the principle of harnessing healthcare data on a commercial basis? How will it support efforts to directly engage the public in harnessing the value of their healthcare data to deliver better outcomes for society?  The Lords’ debate is a critical opportunity to raise these questions.

Read our briefing note on the House of Lords debate about the value of healthcare data here.