On Saturday 19 July I met a physician at the HOPE conference (Hackers on Planet Earth) who does medical device research and policy. Here is his organizational website.
We were talking about health records which patients keep for themselves. It seemed to me that his ideas were related to the open notes project, Consumer Reports product testing, and perhaps an opportunity for Consumer Reports to take a position somehow.
This person, a podiatrist named Nick, is interested in ethical practices associated with physicians using patient-provided health data generated by activity trackers. “Activity tracker” is becoming a technical term for any product which generates data about what a person does. The Fitbit, which tracks all walking, sleeping, and other things, is a more known example. Cell phones do this too in so many ways but are not yet imagined as activity trackers. A range of other devices seems to be part of a “quantified self” movement to either wear devices, get data from the phone a person already carries, or do things like track movement with a Microsoft Kinect or perhaps floor sensors.
The problem which concerned Nick is that doctor-given tracking devices created data which is protected with privacy regulations. A new generation of health devices in many cases will generate data of higher quality than any doctor ever collected, but since these typically will come to consumers in channels other than through a doctor/patient relationship, the data they generate will not be protected with health privacy laws, and a new field of collecting health data by non-health organizations seems likely to arise.
I felt that this problem could be related to the open notes project because as with open notes, all of this data will be completely in consumer control. I also expect that all kinds of organizations will seek to capture and keep this kind of data, and neither I nor Nick are sure what consumers should consider if someone asks to have access to the health data which they themselves manage.
Nick asked me if I or someone from Consumer Reports might visit their university at their expense to describe Consumer Reports’ open notes project and to talk about how consumers get health information and what consumers ought to do when asked to share the health information they hold. I said that I was not sure and that I would think if something ought to be discussed.