Heart Gadgets Test Limits Of Privacy Laws on Health offers a provocative look at the rivers of data collected by implanted cardiac defibrillators. Basically, reams of raw data are being transmitted to the manufacturers (such as Medtronic). The manufacturer then shares shares summary data, on a selective basis, with physicians, but not patients. The manufacturer may use the data for R&D or as a new income stream. According to the article, implants “collect details on heart rhythm changes, device performance and hundreds of other data points.” It’s not hard to imagine such devices collecting data on location, activity, and more.
Naturally this raises some concerns among patients such as: what exactly is being collected, how is it being used, why am I not in control of the collection, and why don’t I have access to the data? If I were a patient or caregiver I would want that information and would use it for self-management. For example, a woman featured in the story had a loose lead that she could have known about earlier. Another patient used data from a monitor to adjust his eating and drinking habits to address arrhythmias. We are just in the infancy of what can be done and I’m hopeful that patients and clinicians will soon by empowered by a whole range of new monitors and user-friendly feedback mechanisms.
But there are serious dangers lurking. Patients in the article are concerned that insurers may deny them coverage for an accident if they’re shown to have been sleepy at the time. I understand the concern but am personally not so worried about scenarios like that.
I am worried, though, about more sinister exploitation of the data to violate civil liberties. For example, brain pacemakers may become widespread for conditions such as epilepsy and Alzheimer’s. Is it that unrealistic to think that such devices may record and transmit brain waves in a way that would let the device maker read a patient’s mind? And if that’s the case, how long before the federal government starts taking an interest in the name of homeland security? Google, Facebook, and Twitter already deal with government request to turn over user data. How confident are you that a medical device company would resist a request from the FBI to turn over brain waves of a patient?
We need to start the debate now on these civil liberties issues in order to maximize the benefit for patients and other players in health care while minimizing the risks.