Who Owns Your Health Data?
Companies are denying people access to their own data as security risks run rampant
Today, much of our lives — and our health — is observed digitally. We discuss what’s for dinner with our families and our dieting apps. Athletes improve their performance with the help of their watches’ personal metrics. Mothers watch their babies grow both in the flesh and on their screens. People with diabetes can go about their day at ease, having precise knowledge of their blood sugar levels. And some people have even reported developing new senses from meticulously tracking their health.
We now have mobile health devices that are very attuned to our bodies, capable of detecting the subtle changes in our heart rate and sleep cycle. These devices offer us a new avenue to view our health on a daily basis, yet strict corporate data policies often stand in the way of our ability to make use of our data in the context of our own health.
Many people will use a device or download an app looking to address a specific health problem or develop a good habit. But in practice, users struggle to see what their data could mean for their health beyond post-workout reports and heart rate graphs. People with chronic conditions might want to use their devices to help track long-term changes in their condition but are forced to dig deeper to understand how to tailor an off-the-shelf tracking device so it can monitor their particular situation.
When companies deny people access to their own data, they’re likely to rebel.
Hugo Campos, a heart patient, wanted to understand how everyday activities affected his heart and saw that he could use the data from his implantable cardioverter defibrillator (ICD) to inform his lifestyle decisions. He needed online access to his heart data, which his ICD didn’t display for him. When Campos made the request, however, the device’s manufacturer denied access, deeming him to be an illegitimate user of that data — his data. “A built-in computer running proprietary software monitors my every heartbeat,” Campos said in a 2015 piece for Slate. “But the data it records via sensors in my heart is entirely beyond my reach. It is wirelessly transmitted to a monitor set up in my…