It's lack of political will that's keeping the necessary data sharing from happening, she says—company politics and marketplace politics.
The timing is crucial, since there is still an opportunity to establish requirements in Meaningful Use Stage 3 to demand an end to these data silos when those regulations are written in 2014.
"I'm trying to get other people within the diabetes community and other disease communities and groups to join with me," she says. "If we're ever going to have a learning health system, if we're ever going to be able to do real outcomes research for diseases like type 1 diabetes, we need this data to be collected into the EHR. Outcomes for type 1 diabetes are horrible."
The entire notion of a learning health system is worth a column of its own. Meanwhile, I wish McCollister-Slipp all the best on her self-described crusade. Meanwhile, be sure to check out ASCO's CancerLinq, which has implications across all of disease management.