The big issue we have in healthcare, unlike in other industries is healthcare privacy. There is something called “trade secrets.” One hospital competes with another, even though they are not-for-profit. But behave very much like for-profits in their competitive landscape.
Patients are ultimately the owners of their own data but who owns the aggregate of information? We will hopefully see is that we are in this temporary period, or in a transition period. “Over time, I think we will see new information systems come about that put patients more in the driver’s seat of actually holding on to data and being able to provide it to different providers that are taking care of them. And government does have a role in setting regulations to protect patient privacy” said Rena M. Conti,PhD.
If I’m in charge of a data set from my country, only important matter is healthcare privacy. If the data is DE-identified we can share for many purposes (e.g., to improve individual and population health outcomes, to increased transparency and efficiency, to improve ability to study and improve care delivery). And government has responsibility to set up the framework to facilitate those solutions whether updating the certain laws.