Some time, perhaps in a future post (!), I’m eager to hear Cory’s advice on the dilemma over research use of “anonymous” health records. I couldn’t discern his bottom line from this post (it may be a work in progress).
Here are a couple stark options (but I know I’m missing the clever in between compromises).
Option #1. Disallow research use of health records even in anonymous form. Cory argues that the technology for making the records anonymous is flawed. We could simply say, “research and knowledge cannot move forward in this direction, however valuable, because of the confidentiality concerns.” This option seems contrary to Cory’s usual view of things.
Option #2. Improve the technology for making records anonymous and then move forward with allowing research access. In a sense, research with successfully anonymous records is similar in spirit to research with aggregated data, which nobody doubts is a good thing. I could not tell if Cory really is optimistic that, with more elbow grease, a good system for anonymyzing data is possible.
