Thursday, September 1, 2016

When your phone is your doctor, who owns your health records?


Today's smartphones increasingly resemble the handheld medical scanners of a science-fiction future. But as our always-on devices transform medicine, we need to look to the past as well, ensuring that technology companies abide by the 2,000-year-old-dictum that binds doctors: first, do no harm.
 
More than 110 million wearable sensors were sold worldwide in 2015. Fitbits, heart rate monitors and smartphone apps not only count our steps and track our workouts, but also have the potential to produce "digital biomarkers" - indicators of medical conditions or symptoms. These digital traces of our daily activities could one day become warning signals of nascent health issues. Our web browser history could alert psychologists to a pending manic episode. Activity monitor location data may one day help diagnose mobility disorders such as Parkinson's disease.


What we do (or don't do) on our smartphones might facilitate early detection of dementia or cognitive decline. The research emerging shows us real ways in which smartphones and other devices may one day improve our health.

Unlike health information collected and provided to healthcare professionals, the consumer digital data on fitness or health gathered by tech companies enjoys practically no protection. Virtually no policies, laws or procedures protect user privacy or guarantee users access to this information.
This presents two parallel challenges: we need to protect data from those who want to hurt us, and to access data ourselves when we need it. All of these issues have the same principle at stake: people whose bodies generate health data should have power over how it is used.

The risks of discrimination are self-evident. But the rights of consumers to control their own information are perhaps more important. Currently, most of us haven't the foggiest idea what health information could be detected from our data. Will we be able to access such data when we need it?

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