Health data could form the basis of a UK sovereign wealth fund

The writer is fellow at the Centre for Science and Policy at Cambridge university

King Charles recently decided that the wealth created from wind blowing over Crown land should be shared more broadly with the public. This could generate as much as £1bn per annum, it has been estimated. What other assets do we have in the UK that are collectively owned and should be harvested for the public good?

In 1990, Norway created a sovereign wealth fund to store the wealth generated annually from oil. The value of this fund varies with the market but is reported to have reached $1tn during the recent boom and is used to safeguard the country’s economy. Could we in Britain create a Coronation Fund that captures and deploys wealth from our own shared assets?

An opportunity has arisen, partly as a result of the information technology capability developed within the NHS to help defeat Covid-19. The NHS collects valuable and diverse patient data, which is stored within geographically distributed and legally federated trusts, each of which is separately governed. Newly developed safe data-sharing technology, deployed during the pandemic, now allows this to be shared between trusts and more broadly with researchers. This is vital in helping to save lives but it is also potentially a strategic national resource.

The question is how such a fund might work. One possible legal structure to house the data could build on the work of the Ada Lovelace Institute and the AI Council (with input from the Royal Society), which have reported on what a “data trust” might look like. A cooperative could offer one attractive legal structure: all citizens are members and would share in any surplus generated, while the governance reports to the data subjects, not shareholders. This is a possible structure that enables the wealth generated to benefit the whole population; in addition to the health benefits and those of potential data-driven medical breakthroughs. I know that my data alone is worth nothing. The value lies in sharing safely.

The pandemic has taught us that while some data must always remain private, others — such as infection status — can and should be shared. The NHS has already begun to develop the technical architecture to safely collect and share data between trusts, and value is being derived from it.

Data collected by trusts can now be accessed safely via an NHS-developed system under rigorous access rules agreed by patients, doctors, researchers and administrators. This can be extended within a governance regime agreed by patients, doctors, researchers and administrators to help create value.

The safe data-sharing infrastructure was developed by the NHS. UK-based Privitar Ltd, a company I helped found, provides the software to protect patient identity under strict governance rules. It is a small conceptual leap, and realistic practically, to take the technical work done so far and use it to create a privacy-preserving pool of UK patient data. This in turn could become a national resource. 

What could the revenues generated by using this data to help treat disease look like? The global drug development market is estimated to surpass $100bn by 2027. Value is created by speeding up drug discovery, helping establish safe drug delivery to disease sites, and accelerating ethical clinical trials. It has been estimated that curated NHS data could be worth £5bn per annum in perpetuity.

From a legal and technical perspective, a UK sovereign wealth fund could be created from these potential revenues. It could even be named for the Coronation. Of course this can only be done with the democratic agreement of the nation’s people. That would require trust that their data is adequately secure and that information about individuals would be impossible to identify. But, like Norway, it is worth taking action to develop a unique asset to be deployed to help the public good.

Wendy Hall, chair of the Ada Lovelace Institute, contributed to this article