The future of health care will be deeply connected to the future of tech. Companies like Google, Apple, and many others are studying how gadgets and apps can make us healthier and help us live longer than previous generations. Using advanced personal devices that can track health-related parameters and lifestyle patterns, tech companies can help doctors find new remedies and cures for existing conditions. To pull everything off, tech companies and medical organizations need access to medical data in bulk. But accessing someone’s personal medical information shouldn’t be done unless explicit consent is obtained from patients.
News broke last week that Google will access the medical records of more than 1.6 million patients in the U.K. for developing a an app to help monitor symptoms of kidney failure. But patients who don’t feel comfortable sharing their medical history with the search giant can ask to opt out.
The data Google will be able to access after its deal with the NHS includes the names and medical histories of every medical patient who stayed overnight at the Royal Free, Barnet and Chase Farm hospitals in London in the last five years. The data includes all sorts of information, including HIV testing, drug overdoses, abortions, and other data.
A doctor who campaigns for patient privacy told Business Insider that patients concerned about their privacy can contact the information governance lead/data protection officer at the Royal Free (here’s the address you need).
“You should make it clear that you wish for no information about you whatsoever to be passed to Google under this project, for both primary and secondary purposes,” Neil Bhatia said.
You should also ask that you want any already uploaded information about you to Google under this project to be completely deleted.
“You can also, if wished, request that information about you that the Royal Free uploads to various organisations for secondary purposes (i.e. which have no relation to your direct medical care) — otherwise known as SUS data extractions — is completely anonymised from now on before it is sent,” he said.
“Access to timely and relevant clinical data is essential for doctors and nurses looking for signs of patient deterioration,” Google DeepMind Dominic King told the BBC about this project. “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.”
While Google’s plan to develop an app that could monitor kidney failure is certainly admirable, it’s worth pointing out that neither Google nor the NHS has obtained expressed consent from the patients, nor have they informed patients about how they can opt out from the study.
“I’m sure they’re [Google DeepMind] well meaning, but I don’t think we should be doing all this in such secrecy,” University of Sheffield professor of machine learning and computational biology professor Neil Lawrence said. “I think it’s a little strange that this information isn’t public as a matter of course.”