The New England Journal of Medicine (NEJM) latest edition that was released today has a very interesting article written by none other than Kenneth Mandl and Issac Kohane of Children’s Hospital Boston. These two also happen to be the leaders behind the development of the Indivo platform that Dossia has adopted as the foundational technology for their Personal Health Systems (PHSs) platform. Unfortunately, you need to be a subscriber to NEJM to see the paper. Fortunately, NEJM is giving out free 21-day trial subscriptions so have at it.
Having read the paper, I do know its content and the main thesis that Mandl and Kohane put forth which in a nutshell is the following:
As the potential for these large PHSs being developed by Dossia, Google and Microsoft reach sufficient size and scale, the amount and richness of data they contain will lead to a “tectonic shift” in medical research. They go on to posit that the medical establishment is ill-prepared for this shift and that there is also a need for a policy framework for to address privacy concerns.
A timely piece in light of the joint WellPoint-FDA announcement earlier this week.
The New York Times ran an article today highlighting this paper. Unfortunately, it is very poorly researched, poorly written and ultimately of little use. But what really bothers me about the article is the nearly sole focus on privacy. When will the press begin to do more homework and stop beating this dead horse? How about whenever they write about PHRs and privacy, they also have to have at least one reference to some privacy breach at a hospital – there are certainly plenty of these to choose from and I have yet to hear of a privacy breach at a PHR company.
The paper also prompted a piece on National Public Radio (NPR) this morning addressing the topic of PHRs. Nice, little piece that includes an interview with a consumer who is actively using a PHR to improve her health. The good thing, her health has improved. The bad thing, she has to enter information manually into her PHR which even she admits is cumbersome.