NHS data for sale – but at what price?

AI researchers want datasets, but it’s unclear whether trusts are getting a good deal.

are selling patient data to research companies, but there’s little oversight over the deals or whether they represent good value for money.

The vast data troves stored by the NHS are sought by companies working on AI and machine learning projects that could feed benefits back into healthcare, but the ecosystem remains largely unregulated, with individual trusts striking their own deals with companies.

In theory, selling access to datasets is a win-win for the NHS as it receives financial returns and the potential of new life and money-saving tech. But it’s not clear who’s controlling the flow of data and whether the trusts are getting a fair price for the data in this nascent market.

“The value of data lies in the way it is used and what it can be combined with, so it’s not really feasible to say what NHS data is ‘worth’ in and of itself,” said Natalie Banner, lead of Understanding Patient Data, a healthcare working group looking into various uses of data for research.

Nevertheless, there are several firms circling the NHS data. Googlefunded Owkin is rumoured to be courting London hospitals, DeepMind Health has already invested, while Oxford-based Sensyne has recently signed deals with several NHS trusts, most recently with Wye Valley.

Under this “strategic research agreement”, Sensyne gets access to data on 1.36 million hospital admissions for 220,000 patients.

The public is, however, ‘incredibly wary’ when the data is passed to third parties who might profit

In return, the company will give the trust a £2.5 million equity stake in Sensyne, as well as a 4% share in royalties on any money made from products or services built as a result of the data analysis.

“The royalties the trust receives will be reinvested back into the NHS, which can fund further research and can help deliver higher quality patient care at lower cost,” Sensyne said, but the financial return obviously depends on the company being able to sell its products – perhaps to other NHS trusts.

“There are numerous different partnership models out there and I think it’s probably too early to say if the NHS and patients are getting good value out of them,” Banner said.

“Research takes time and I don’t know of any specific examples of products or services specifically developed using NHS data that have come to market and therefore shown a clear monetary or product benefit back to the NHS, and to patient care.”

Trusts shut out of their own data

The question of value is a knotty one for both health authorities and the companies working with data. Once a dataset has been worked on – and it’s often in a poor state when delivered – it can be difficult for the NHS trust that provided the data to reuse the analysis because, even if the data technically still belongs to the NHS, it may have been converted into a proprietary format.

According to a Department of Health report from last year – Accelerating Artificial Intelligence in health and care: results from a state of the nation survey – at least 35% of work on datasets is done in proprietary formats that provide little feedback value for health trusts.

“The underlying data infrastructure is not fit for purpose for AI and requires standards to facilitate data sharing and the development of appropriate commercial models to leverage the value of public/NHS data,” the report found. “This is an especially pressing concern where public sector entities have entered into agreements with companies to process data.

“These datasets often end up in proprietary format or in difficult to access repositories and the intellectual property of algorithms developed using these proprietary datasets often rests with the companies, and outside the public sector and NHS.”

Public perception

Then comes the question of how much patients know about the market for their health data and whether they would consent if they knew the extent of data sharing.

According to Understanding Patient Data research, patients are generally not adverse to their data being used for research purposes within the NHS, where there are clear health benefits. The public is, however, “incredibly wary” when the data is passed to third parties who might profit.

“There are sometimes good reasons for private companies to be involved, especially where they can provide expertise and resources that the NHS simply doesn’t have,” Banner said. “But these absolutely must be transparent about what data is used, for what purposes, where it goes, and what the rules are around what happens to the data (including the sanctions if data is misused).

“Even if data is anonymous (and so it’s not a privacy issue per se), people still care about what happens to it and that it’s used for public benefit, not commercial exploitation.”