NHS patient data sharing with Google Deepmind slated in paper, but Google and Royal Free Trust fire back at ‘significant mistakes’
A war of words has erupted between a major technology vendor and the authors of an academic paper, which fiercely criticised a NHS patient data sharing deal.
The academic paper was published in Health and Technology, and alleges that “inexcusable” mistakes were made when DeepMind Health signed a data sharing agreement with hospitals run by London’s Royal Free NHS Trust.
The agreement was linked to the development of a mobile application called Streams by Google subsidiary DeepMind, aimed at helping hospital staff monitor patients with kidney disease.
Under the terms of the original data sharing agreement, DeepMind was given access to five years worth of data, covering 1.6 million patients, most of whom did not have acute kidney injury or disease.
The agreement has prompted an investigation by the Information Commissioner’s Office, and has also been criticised by privacy rights campaigners.
The paper was written by Julia Powles, a Cambridge University academic, and Hal Hodson, a journalist who covered the news of the deal.
“Initially received with great enthusiasm, the collaboration has suffered from a lack of clarity and openness, with issues of privacy and power emerging as potent challenges as the project has unfolded,” said the paper. “The failure on both sides to engage in any conversation with patients and citizens is inexcusable.”
“The clear take-away from these reports and recommendations – and indeed the entire regulatory apparatus around healthcare – is that patients should be able to understand when and why their health data is used, with realistic options for effective choice,” it stated. “Patients should not be hearing about these things only when they become front-page scandals.”
But the Royal Free and DeepMind have hit back at the accusations, and accused the paper of containing ‘significant factual and analytical errors’.
“This paper completely misrepresents the reality of how the NHS uses technology to process data,” the two organisations were quoted by Digital Health as saying in a statement.
“It makes a series of significant factual and analytical errors, assuming that this kind of data agreement is unprecedented,” DeepMind and Royal Free added.
The paper’s authors, in response to the statement from DeepMind and Royal Free, reportedly said “the accusations of factual inaccuracy and analytical error were unsubstantiated,” and they invited the parties to respond on the record in an open forum.
But others will point out that the DeepMind and Royal Free deal sets a dangerous precident for data protection.
“The 2015–16 deal between a subsidiary of the world’s largest advertising company and a major hospital trust in Britain’s centralised public health service should serve as a cautionary tale and a call to attention,” concluded the paper.
“Through the vehicle of a promise both grand and diffuse – of a streaming app that will deliver critical alerts and actionable analytics on kidney disease now, and the health of all citizens in the future – Google DeepMind has entered the healthcare market,” it stated.
“It has done so without any health-specific domain expertise, but with a potent combination of prestige, patronage and the promise of progress,” the paper stated.