One of the core tenets of the emerging notion of VRM is that we, the customers née users, should be in control of our own information. That is, we should decide what we tell to whom, under what circumstances. Additionally, we should be able to hold onto our own info (and, if a third party needs to hold onto our info on our behalf, we should be able to export it and move it elsewhere, easily).
Mike at Techdirt points to an article about how to create a personal health record (PHR) that gets to this idea in, of all places, the slow-to-change U.S. healthcare industry.
From an abstract, theoretical perspective, the PHR idea makes perfect sense. However, there are so many aspects of this that (I think) would be hobbled by the notoriously risk-averse healthcare industry. In particular, a number of questions come to mind, including:
- Will doctors accept the information in a patient’s PHR at face value, or need to re-run all test results to “cover themselves” for liability reasons anyway?
- What are the implications if someone gets ahold of my PHR? For example, can the information in my PHR be used to discriminate via insurance premiums?
- What if an unauthorized third party gets ahold of my PHR? What are the consequences of the theft of one’s medical history?
- More broadly, how does one select which portions of a PHR to share with which caregivers? Do I want everyone to have access to everything? (I think the answer is “no.”)
Anyone out there experimented with this at all? If so, would love to hear your stories.
There are a couple of issues here: 1) privacy and 2) standards. On privacy (and related to your bullet-point 2), the WSJ ran an article a few weeks ago about a woman whose insurance claims were denied because her psychiatric records were co-mingled with her GP records. Although the current system stinks, it does offer a bit of low-tech defense.
On the second issue of standards, the US has no single-payer system that can guide (or enforce) the development of standards. Therefore, standards development and adoption will left to regional health systems and the doctors that participate in those systems — inevitably resulting multiple and conflicting initiatives that the customer ends up paying for.
A couple of days ago I got an email from a friend that I haven’t seen in some time — he’s coming into NYC and wanted to catch up while he’s here.
Turns out that he’s coming to NYC because he recently started working for a company that’s developing software around PHRs, oddly enough. I’ll see what info I can get from him tonight, and point him in the direction of this post.
excellent. thank you!