An NHS trust has confirmed that patients can stop Google from accessing their medical records by contacting their data protection officer.
Last week, New Scientist reported that the NHS has given Google access to approximately 1.6 million patient records in order to help the internet giant develop an app to monitor possible kidney failure.
The data includes the names and medical histories of every patient who has stayed in Royal Free, Barnet and Chase Farm hospitals in London overnight or attended A&E in the last five years. The data is anonymised meaning that Google employees should not be able to directly identify anyone.
UK citizens are legally allowed to opt out if they don’t want Google to have access to their data but neither Google nor the NHS spelt out how patients can do this — until now.
Emily Kearney, director of corporate affairs and communications at the Royal Free London NHS Foundation Trust, sent us a link to the generic privacy statement on the Royal Free London NHS Foundation Trust’s website. Note that the word “Google” is not mentioned once on that page.
When we asked for clarification, one of here colleagues sent Business Insider an email saying patients “should [contact their data protection officer and] say I wish to opt out of data sharing with Google DeepMind or they can ask to be removed from any third party which we share data with.”
The clarification from Royal Free London NHS Foundation Trust comes after Neil Bhatia, a GP in Yately, Hampshire, who campaigns on the issue of patient privacy, provided his best guess on how patients can ensure their medical data isn’t being accessed by Google.
If a patient does opt out then the NHS will not be able to alert them to possible kidney failure while they are a patient at the Royal Free London NHS Trust, O’Brien explained.
O’Brien added that it’s possible for patients to opt out of just the DeepMind data-sharing agreement, meaning the NHS can continue sharing their data with the other non-NHS organisations that it works with.
Through the data-sharing agreement with the NHS, first obtained by New Scientist, Google will be able to see, for example, information about people who are HIV-positive as well as details of drug overdoses and abortions, according to New Scientist.
Privacy campaigners have questioned why Google needs access to data of all patients to create such a niche app.
Daniel Nesbitt, research director of privacy and civil liberties pressure group Big Brother Watch, said: “With more and more information being shared about us its becoming clear that in many cases members of the public simply don’t know who has access to their information.
“All too often we see data being shared without the informed consent or proper understanding of those it will actually affect.
“It’s vital that patients are properly informed about any plans to share their personal information.”
Dominic King, a senior scientist at Google DeepMind, told the BBC: “Access to timely and relevant clinical data is essential for doctors and nurses looking for signs of patient deterioration. This work focuses on acute kidney injuries that contribute to 40,000 deaths a year in the UK, many of which are preventable.
“The kidney specialists who have led this work are confident that the alerts our system generates will transform outcomes for their patients. For us to generate these alerts it is necessary for us to look at a range of tests taken at different time intervals.”
New Scientist wrote an opinion piece on Wednesday arguing that patients should be informed if their private medical company is about to be shared with a company like Google. “If we are to hand Google et al ever more data, then we should insist they ask us first, and tell us what they want it for,” New Scientist wrote in its leader. “Who knows, if we were better informed and the companies less secretive, they could win our consent to do things that would really make our heads spin.”