PHR as an equal peer on the HIE

There are many people wondering why the Patient is not involved in the discussions of HIE. I think that the patient is involved, but I am not likely to convince any skeptics. What I am frustrated by is that the PHR vendors, who claim to speak for the Patient (Ill leave that skepticism aside), are sitting around the edge of the room and shouting insults at those trying hard to make something work. A very civil example is one out yesterday from Bill Crounse from Microsoft. Bill points out a very realistic view of how the Patient can collect and make available their health information.


I would rather the PHR vendors come into the open and transparent discussions as someone who wants to be constructive. The HIE model I have always envisioned and worked hard to make concrete in the IHE XDS and XCA profiles is one where the PHR is an equal partner on the HIE.

A fact that is not well publicized by Microsoft is that they were a major force in the creation of XDS.b as their IHE member was the Editor of the supplement throughout the development. So, clearly there was a time when they did participate openly and transparently in the development of the Profiles that they are now ignoring.

Another fact that is not well publicized by Microsoft is that they were a major contributor to PCAST, where they write about a very different model for building a HIE.

By participating as a equal partner on the HIE,  the whole vision that Bill has can happen. And yet for those patients that are NOT CONNECTED their data can still be shared. And support those use-cases that are necessary without the patient agreement (such as legal action).

I challenge the PHR vendors to come into the open. Participate openly in a transparent way. Help us understand why there is concern with the current models. Help us shape the solution. This is a journey, not a destination. Stepping stones are what we need to make concrete while having a good vision of the horizon.

Update 4/8/2011: Bill tells me via Twitter DM that he never got my comment, so I entered it again.