Towards a Sovereign Health Fund
Trust is vitally important in digital healthcare. Ongoing work led by the Wellcome Trust and others is critical to help nurture the dialogue with the public. But, in practice, we need to respond to Baroness O’Neill’s searching question: how can we make it easier to judge trustworthiness?
Recent research by Future Care Capital highlighted that our ability to judge how the value of health data about us is being harnessed is currently ‘missing in action’ - in particular, when data are used to create innovations with third parties; for example, universities and private enterprise. The unknown unknowns uncovered by the research could do damage to the trustworthiness of the NHS over time – hence the need for ‘radical transparency’. However, transparency is a ‘fashionable remedy’ that can be difficult to apply in practice.
Healthcare data have the potential to generate clinical, social, economic and commercial value – none of which is straightforward to measure. Parliamentarians and key stakeholders have, nonetheless, told us that this value should be protected, enhanced and deployed in the public interest and for public benefit. There will be trade-offs when one form of value creation is emphasised over another, which is why we’ve consistently called for a National Health and Care Data Strategy. We also need a grown-up conversation with the general public about the potential monetary value of such data and how it might be harnessed then deployed.
Seeking a ‘fair distribution of benefits’ from data-driven innovation in health and care, in keeping with the Government’s stated policy, could be deemed challenging to grip. There is potentially significant disparity in the ability of different NHS Trusts and different places to harness the value of the data they control, generate and share when they enter into contractual relationships with third parties.
It is imperative that the tension between the use of data to generate insights and tools as well as intellectual property at the local level be reconciled with our NHS and public expectations that are, in some senses, blind to the devolved institutional structures responsible for health and care provision.
Future Care Capital has, for some time now, advocated exploration of the potential to establish a Sovereign Health Fund with all of the above borne in mind. A Sovereign Health Fund is envisaged as:
- A fund underpinned by revenues and shares linked to the data, insights, tools and IP developed by or with public health and care organisations.
- A fund which would invest in a portfolio of healthcare assets and enterprises to generate a long-term return, akin to other sovereign wealth funds, to generate value now and in the future - because the social contract underpinning our health and care systems is an intergenerational matter, not something to be disbursed today and gone tomorrow.
- A fund generating proceeds which would be ring-fenced for health and care in the UK to foster trustworthiness that could, also, afford citizens a say and a stake in how those proceeds were deployed – whether for R&D, to accelerate access to new treatments and technologies, to reduce taxes associated with social care or some other legitimate purpose.
- A fund designed to guarantee the ‘fair distribution’ of associated benefits.
Cross-government coordination is urgently required if the value of data controlled by health and care organisations in the UK is to be optimised. There is a real risk we run out of time such that its value ‘leaks’ or depreciates beyond a critical tipping point. A Sovereign Health Fund is, for its part, a very big idea and will require political courage and leadership if it is to be seriously explored – let alone, realised in practice.
Cross-government coordination is urgently required if the value of data controlled by health and care organisations in the UK is to be optimised