The New York Times just published “Using Patient Data to Democratize Medical Discovery“.
The article talks about activity trackers and Apple’s software suite for reporting health information to Apple devices. It links to the story of a patient named Steven Keating who benefited from having his own health records.
Keating’s “The Healing Power of Your Own Medical Records” describes how he used his health records to find a problem his doctors did not detect. It describes MyOpenNotes as a movement to help people like this, and cites a BMJ paper on the subject. That paper, “US experience with doctors and patients sharing clinical notes“, says nothing explicitly about activity trackers.
This is the first time that I have seen in print someone signalling a connection between MyOpenNotes and an expansion of the quantified self movement. I appreciate the benefits of patient access to open notes, but I worry that patient access to open notes might only be a minor part of the MyOpenNotes project, or that MyOpenNotes may be a foothold into industry legitimization of collecting huge amounts of patient data and making the same available to patients, if only corporate interests can also have a copy of the medical records. Some people at Consumer Reports have supported the open notes project. In the context of Consumer Reports and nonprofit advocacy, sometimes there is a blur between the personal interest of staff and what individuals do. I suppose it could be said that Consumer Reports supports open notes also, even though that is not an entirely thoughtful organizational position.
All activity trackers report their data back to their corporation. I am alarmed that the article makes no distinction between patients getting their data through MyOpenNotes and both patients and a corporation simultaneously getting data through an activity tracker. I worry about a narrative in which personal health devices are imagined to be only for the benefit of patients. I have worries that there are companies that would like access to patient health information and that they want to get it outside a medical context and outside the context of HIPAA regulations.
I say repeatedly – if science had more access to data, then the world would benefit. I want activity trackers which report to science so that collectively, science can bring improvements. My concern is that the entities which grab data talk about how it is open but with a little examination, it becomes obvious that they would never share it with any scientists outside of their financial interests. They seek data donations promising good will and science but actually they only want market leverage. I wish instead that all data could go to an honest broker who would act as a neutral third party in protecting the privacy and rights of the data donors and granting access to the data to advance science in priority to the advancement of any single entity’s commercial interests.