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.
As the founder of a company in the diabetes technology and program fields, I can vouch for the user’s comment regarding the unfortunate requirement for cumbersome manual entry. Since diabetes is one of the primary targets for PHR, it is essential that as much data as possible is at least considered on the way to an automated population of the PHR. Things like blood glucose data, A1c lab data, insulin ratios, actuals, etc… and heart rate, blood pressure…
We’ve automated the accuracy and collection of key data elements including blood glucose via the GlucoMON® device which is a GSM/GPRS wireless connectivity appliance. This level of automation is absolutely required given our several years of experience based on the results of our first field trial in 2002. Even a button push seemed to get in the way of data collection back then as reported at the 2003 Diabetes Technology Society’s annual meeting.
PHRs are cool but they better be easy and there had better be some excellent feedback for the users or they won’t participate for long.
PHRs are cool to those of us active in this industry and maybe a few consumers, but if they remain simple repositories of records, adoption will remain anemic.
But there are some interesting PHRs arriving in the market that might make a nice match with your technology Kevin. Top on the list would be the German company, ICW nd their LifeSensor PHR. While their presence here in the states is virtually nil, they have been doing some very interesting work in Europe, most recently a hypertension pilot program running through 2009 combining their PHR with remote device monitoring and uploads via Bluetooth/mobile phone.