Yes, I do rant on at times about the whole privacy of health data issue as there is so much fear mongering, ill-informed/ill-logical pronouncements and just mis-information that it makes me want to scream. Of course, there is also the nearly weekly reports of this healthcare institution or that blowing it with regards to security and inadvertently releasing )stolen, or just mis-managed) consumer health data.
It is not that this issue is not important – far from it.
The security and privacy of health data is paramount, but that privacy needs to be defined and controlled by the individual that is at most risk to its exposure, the consumer. Let the consumer decide who they wish to share that information with, not some third party, and the consumer can make the decision if the release of that data will provide some beneficial value to them personally.
Last year, I attended my first healthcare conference, the Pay for Performance (P4P) event put on by the World Health Congress Group. (BTW, I attended the event again this past Monday, it’s now called the Healthcare Quality Conference and I’ll post on that later.) At last year’s event I got to speaking to one of the exhibitors, a big data aggregator/provider who outlined to this neophyte the data services they provide to insurers that help them develop population risk profiles for assessing insurance risks and subsequently rates. Was surprised at the level of data they could provide, but being a neophyte, did not really think much about the implications.
What is surprising is how little the average consumer knows with regards to how their health data is currently being shared and used today.
To shed some light on the subject, earlier this week, the Washington Post published an excellent and lengthy article (comments are worth scanning as well) on the subject of mining Pharmacy Benefits Mgmt (PBM) data servers to ascertain the relative health risks of individual consumers. Having many years ago been on the short-end of the stick in trying to purchase disability insurance, I know just how draconian insurers can be and I know realize what may happen in the future.
Their ability to further mine my medication history is really pretty scary as I go out on my own to establish a business practice. Once COBRA has expired, will I have easy access to affordable health insurance or will some pre-existing (or past) condition of mine or a loved one completely blow it all out of the water? For the time being I’m keeping my fingers crossed.