Royal Free NHS Trust has announced it is allowing patients to opt out of a data sharing deal it has with Google’s DeepMind artificial intelligence (AI).
Through an agreement between the Trust and the AI company Google owns, DeepMind has access to 1.6 million NHS patients' records and uses them to develop an app aimed at improving the identification and treatment of patients at risk of acute kidney injury (AKI).
But despite the agreement stating that Google cannot use the data in any other part of its business, privacy campaigners have been wary of the access that the online giant has to the data, which includes logs of hospital activity and results of pathology and radiology tests.
It will also mean that the company holds NHS data on patients who are HIV-positive, for example, as well as those who have had abortions and experienced drug overdoses.
The Royal Free Trust insists that DeepMind will be provided with the data in accordance with strict governance rules and for the purpose of direct clinical care only. It said that more than 1,500 other third parties had undergone similar NHS information governance processes.
Indeed, DeepMind isn't the only technology company working to improve AKI, a condition believed to be linked with as many as 100,000 deaths in UK hospitals every year; Patientrack has worked with Western Sussex Hospitals NHS Foundation Trust to develop a system to automatically detect and help prevent AKI.
The condition is said to be 100 times more deadly than MRSA and is estimated to cost the health service between £434m and £620m every year, more than skin cancer and lung cancer combined.
But while Patientrack is a health technology company, DeepMind is owned by one of the biggest technology companies in the world, which already has a lot of consumer data at its disposal, hence the controversy surrounding the deal.
The worry from a privacy standpoint is what Google could do with this additional sensitive and private data, particularly as DeepMind is receiving health data that is not necessarily linked to AKI.
But the Royal Free NHS Trust suggested that all data is shared with the purpose of improving patient safety and care. "The Streams app, which is being developed, uses data to provide diagnostic support and track patient outcomes. Therefore, a range of patient data must be analysed," it said.
It also suggested it needed five years' worth of historical data "to analyse trends and detect historical tests and diagnoses that may affect patient care".
The Royal Free insisted that it was not selling patient data, and that it would remain the data controller at all times.
It said it could not have asked for permission from patients to share their data because it wouldn't be "practical or safe" to do so. The Caldicott Information Governance Review states that health professionals can rely on implied consent when sharing personal data in the interests of direct care.
However, patients can opt out of having their data shared with DeepMind, or any non-NHS organisations that have data-sharing systems with the Royal Free London, by contacting the Trust's data protection officer. Further details can be found in the Royal Free privacy statement.
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