Health data belonging to millions of UK National Health Service (NHS) patients has been sold under license to US companies and global pharmaceutical firms, in a move that is likely to inflame tensions between the UK government and privacy campaigners in the run up to the December 12 election.
The Observer reports that US drug firms including Merck, Bristol-Myers Squibb and Eli Lilly have all contracted agreements with the UK government, purchasing licences costing up to £330,000.
Documents obtained by the newspaper reveal that the Clinical Practice Research Datalink (CPRD), the government body responsible for issuing licenses for access to UK patient data, shows that it received over £10m in revenue in 2018.
The news will reignite the debate over any post-Brexit trade deal the UK may seek with the US. Throughout the UK election campaign, the opposition Labour party has repeatedly claimed that the ruling Conservatives may allow US firms to privatise parts of the NHS in pursuit of a trade deal.
Labour leader Jeremy Corbyn has been eager to bring to the public’s attention recently leaked documents detailing discussions between officials from both countries on how the US has set its sights on extending data sharing partnerships with the UK. As part of the leaked minutes, US Trade Representative Robert Tanner highlighted the fact that the “free flow of data is a top priority” for the US in the context of the UK/US future relationship.
Moreover, other concerns with regards to US interest in UK health data were raised over the weekend, as documents released as part of a freedom of information request revealed the extent to which the US e-commerce giant Amazon is able to take advantage of NHS data. The company had contracted a controversial deal with the UK’s Department of Health and Social Care earlier this year that allows for Amazon to access NHS data in order to improve its products and services, such as for the Alexa voice assistant.
The freedom of information request, made by the campaign group Privacy International, resulted in the disclosure of the December 2018 contract agreement between the Department of Health and Amazon which reads that the company has been permitted access to all “healthcare information, including without limitation symptoms, causes, and definitions, and all related copyrightable content, data, information and other materials.”
In context, the wording of the agreement only allows for Amazon to access data retrieved from NHS websites, and not any personal data that the NHS may hold on specific patients.
“No patient data is being provided to this company by the NHS, which takes data privacy extremely seriously and has put appropriate safeguards in place to ensure information is used correctly,” an NHS spokesperson said.
However, Privacy International released a statement over the weekend that said the agreement was “particularly concerning” due to Amazon’s “worrying track record on privacy.”
The use of health data in the wider economy has become a hot topic in Brussels, as the EU attempts to reclaim its own sense of digital sovereignty.
Miapetra Kumpula-Natri, a Finnish MEP, said there is no reason why anonymised data shouldn’t be used for medical research because. Doing that doesn’t contravene with the EU’s high personal data protection standards, she said at a recent EURACTIV event on the opportunities and challenges of data sovereignty in the EU.
“If data that doesn’t come back to a specific individual is used for medical research, then there shouldn’t be a problem,” said Kumpula-Natri, who is from Finland’s social democratic party.
“But, of course, if the data may identify a specific individual, then rights may be being limited and more questions are ultimately raised,” she cautioned.
Others have adopted an even more liberal approach to health data exchanges. Christian Guttmann, Global Head of Artificial Intelligence and Data Science at the Tieto Corporation, claimed that access to data could be vital to solving health problems of the future, and may help even “predicting future medical conditions.”
However, for citizens across the EU, trust is a big factor in how their data is used by health organisations.
Despite the recent concerns over the UK Department of Health’s contracts with American firms, citizens still place a great degree of faith in their national health service, a November study by YouGov found, with 59% of people surveyed trusting the NHS to use their personal data in an ethical manner.
The NHS was the only organisation trusted by over half of the respondents in the survey. However, the recent privacy concerns raised over the UK government’s agreements with both global pharmaceutical firms as well as the US’s Amazon may very well impact that degree of trust.
[Edited by Frédéric Simon]