NHS: Healthcare Data

Lord Freyberg Excerpts

Thursday 6th September 2018 Lords Chamber

Moved by

[Lord Freyberg]

To move that this House takes note of NHS and healthcare data and how that data could be used to improve the health of the nation.

[Lord Freyberg (CB)]

My Lords, I am grateful for the opportunity to lead this morning’s debate about the value of healthcare data and how it might be harnessed to transform outcomes for the health and wealth of the United Kingdom for generations to come. I very much look forward to the maiden speech of the noble Lord, Lord Bethell, and wish him every success for this and future contributions that he will no doubt make in this House.

Healthcare is a very personal subject and noble Lords may recall that I have spoken before in this House on the issue. My sister contracted mesothelioma and received poor care from the NHS, when she could not access existing health innovations in time to treat her, as there was no data even on the basics, such as where she could get the radical and uncommon thoracic surgery that she needed in a timely manner. Later, there was no data to allow her rapid path to a clinical trial that might save her life. This is the role of data for care navigation. In the four years since her death, I have come to realise that routine healthcare data has two other crucial roles to play: first, in generating life-saving breakthroughs through real-world research, for which the UK rightly has a global reputation; and, secondly, in providing the real-time care quality assurance that will allow the NHS to make sure that all patients have good quality care. Depending on your choice of expert, the prize in care quality analytics in routine data in cancer alone is tens of thousands to hundreds of thousands of lives a year.

Given that prize and my personal experience, I approach this debate as a patient advocate, not as a politician. In doing so, I have relied on the assistance of many individuals and organisations for advice. I would, however, like to single out one organisation and charity, Future Care Capital, and, in particular, Annemarie Naylor and Joel Charles, for their support and wise counsel as I have tried to get to grips with this complex area. It is my hope that noble Lords will make the most of this opportunity to begin building a consensus view on the national approach to high-value healthcare data which will permeate through here and the other place over the weeks and months ahead.

The value of data in improving healthcare and health is not new. It was the use of data by UK scientists Doll, Hill and Peto that showed the link between tobacco and lung cancer that has driven dramatic life-saving changes in policy, behaviour and life expectancy worldwide. One hundred years before Doll, Florence Nightingale used data to revolutionise the cleanliness of military hospitals, and Dr John Snow used data to identify the source of a deadly cholera outbreak in Soho. Now we have another unique UK opportunity for global leadership. The healthcare data we have amassed over the course of the first 70 years of our NHS can, if ethically and widely used, radically transform the treatments and technologies we will deploy to improve the health of our increasingly ageing nation. At the same time I want to ensure that as a nation, we pioneer reinvesting the social and economic value of this data in full, such that it benefits everyone in the UK, both their personal health and economically.

Across the country, fragmented NHS bodies are separately exploring ways in which to harness the value of the healthcare data they control, while addressing the technical, legal, ethical and cultural barriers to delivering potential benefits, working with researchers as well as industry players from the UK and overseas. Cutting-edge examples of which I am aware include the work of Moorfields Eye Hospital with Google DeepMind—whose artificial intelligence can now use NHS data to recommend how patients should be referred for over 50 sight-threatening eye diseases as accurately as world-leading doctors—and Sensyne Health’s collaboration with the University of Oxford and Oxford University Hospitals Foundation Trust to pioneer a remote management service for patients with heart failure. Given that our principal aim here must be to improve patient outcomes, I am certain that noble Lords welcome such data-driven innovations. I am, however, concerned that there is currently no clearly agreed or stated strategy which sets out how the NHS intends to approach and benefit from providing third-party access to the valuable healthcare data assets the NHS stewards on our behalf, while maintaining the highest ethical standards in respect of safeguarding individuals’ rights to have their personal data protected.

A strategy is required because the Government should have a clearly stated objective in this area, backed up with the ways and means by which to achieve it. It is not credible to devolve this to a fragmented, wild west community of individuals, semi-independent public sector institutions, US technology companies or, at worst, the global market. It is needed because the Government are doing too little to incentivise healthcare data quality “by design” through the exercise of relevant policy and funding levers, impacting its immediate value to the NHS to improve everyday treatment and care quality as well as its value for the purposes of research and innovation. It is needed because government has been slow to take steps to improve or join up data collection across healthcare organisations through an emphasis on standards, open interfaces and interoperability—and it is needed because we are falling behind. Although we are starting to invest in healthcare data access and curation to stimulate third-party access and innovation, our investment is relatively modest when compared with other countries. For example, Israel will invest 1 billion shekels—approximately £231 million—in a project to make data about the health of its population of only 8 million people available to researchers as well as private companies. That is twice the level of recent announcements by Her Majesty’s Government for our 65 million people.

Crucially, in the absence of coherent objectives for national data capture, the Government are neglecting to act at a national level to prevent what might be termed healthcare data “leakage” from an NHS whose primary focus must be on the non-commercial, day-to-day care of the nation. This leakage is already occurring through “barter deals” between individual trusts and commercial entities—for example, in the case of the Royal Free Hospital and Google’s DeepMind—and I expect it could worsen rapidly in new trade deals to be entered into post Brexit with non-EU countries, in particular the USA. This, to my mind, is giving away the family’s digital silver.

Value capture should not be viewed as a simplistic cash transaction to the highest bidder. As the noble Lord, Lord Mitchell, eloquently laid out in previous debates, this would favour US technology companies and provide only a transient return to UK plc. Value capture can, and should, be more sophisticated than that. It can include widespread, cross-NHS rights to use new technologies derived from the use of data, discounted drugs, inward investment and health sciences job creation. It must also address the tension that exists between local and national bodies so that revenues can be amassed and reinvested at the most appropriate level. However, if Government continue to have no stated objectives, it is no surprise that value potential is lost in the commotion and that cash-strapped trusts are lured into one-sided deals.

There is merit in encouraging experimentation at the local level—I have already mentioned some high-profile examples—but in doing so there are also attendant risks. Those innovators engaging in health data usage and value capture may become over-influenced by the needs of an industry partner. They may become wary of linking up their data with that of other institutions for financial reasons, at precisely the time when joining up data would add national value.

Will trusts that are “data and expertise poor” be left having to compensate other “data and expertise rich” trusts in future for the intellectual property they help to develop, potentially exacerbating the postcode lottery in access to innovative treatments and, with that, health inequalities? In other words, do we want healthcare data to create value for the NHS and society as a whole, or for only elite hospitals? Moreover, if healthcare data-sharing agreements do not conform to any nationally agreed standards, is that not liable to impact the financial value generated in different places and, with that, erode public trust and support for related initiatives in other locations? Practically, on clinical trial access, when is it appropriate to use data to inform a patient that there is a trial in another trust that might help them, and how should that research contact take place?

As I have said, we are not altogether asleep at the wheel. The Government have supported the important work of the UK Biobank, Genomics England and health catapults. They have established Health Data Research UK and have recently confirmed their intention to invest in digital innovation hubs to harness high-value healthcare data in a bid to tackle some of Britain’s biggest health challenges. They are also establishing a new Centre for Data Ethics and Innovation and, only yesterday, announced their initial technology partnership code of conduct for data-driven health and care technology. These developments are to be welcomed but, to my mind, they fall short of the coherent approach that is needed if we are to make the most of the data revolution that is patently under way around the world. I would like to understand whether the Government have considered the chaotic implications that are liable to flow from this policy vacuum.

To my mind, the Government, with the help of balanced solutions developed across this House and the other place, should define their objectives for securing the social and economic value that healthcare data has the potential to generate. They should put trust in patients’ demands to have their data used to full effect and regard it as unethical if it is not. They should engage patient representative groups, clinicians and the wider public sector, as well as the general public, to establish the priorities for using healthcare data and reinvesting its value. They should put in place measures to ensure data quality “by design” and fund data clean-up and curation to hasten delivery of those priorities. They should develop a framework for healthcare data-sharing agreements involving NHS bodies to ensure that they conform to nationally agreed standards. They should also provide trusts with access to a dedicated commercial team in order to optimise the financial value to be derived from the healthcare data-sharing agreements they enter into with third parties.

Only then will Great Britain once again pioneer the use of healthcare data, lead rather than follow and capture the maximum value from the data assets offered by patients and citizens alike, while respecting each and every citizen’s right in law to opt in or out of such use. Only then will we be able to realise the prize that data promises, which is better care today through care quality management and better care tomorrow through innovation.

In recent months, I have spoken to noble Lords across this House about the issues that I have outlined today, and I am grateful to both the Government and Opposition Benches for their engagement, as well as their thought-provoking input. Ultimately, I believe that a consensus in this House and the other place is needed if we are to build and maintain public trust in sharing healthcare data to deliver social and economic value for everyone in the UK. I look forward to the contributions of noble Lords from across the House this morning.

--- Later in debate ---

[Lord Freyberg]

My Lords, I thank all noble Lords who have spoken today. It has been quite an excellent debate and I have learned much from it. I echo other noble Lords in congratulating the noble Lord, Lord Bethell, on his excellent maiden speech. He emphasised serious points about the fears that individuals have about their data and how it is used—which I share—but also its benefits. I thank him for his fascinating contribution. I also thank the Minister for the way he has engaged with and embraced this subject. I know he shares a passion for shaping this area to derive maximum public benefit in a socially acceptable way. However, while I recognise that his code of conduct is welcome, in reality it is fine words with no delivery teeth. Without a competent central resource to support the trusts in commercial negotiations on data, they will be steam-rollered. I therefore look forward to engaging with him to prevent that.

As I listened to noble Lords, several themes emerged. If I were to highlight one it would be that making this data resource do what we hope it will do will be hard won. The records are fragmented and incomplete, considerable investment is required to make the data useful, the skills to do this well are scarce and the politics of medical data are challenging. My noble friend’s analogy of North Sea oil in the 1980s seems apt. I therefore call on all sides of this House to engage in this debate and create consensus on the core principles for such a policy.

Motion agreed.