This is probably one of the reasons some may be opposed to nationalized healthcare... The government making a widespread decision to send your medical data somewhere without your permission.
True, but when the data is in private hands, the government sets regulations, like HIPAA here in the US, to regulate those companies' actions. Meanwhile, the government can and often does do what it wants with what it has.
but we don't really have the consent-at-scale technology for anything else, do we? tbh it's just this specific NHS Trust that made the call in this instance.
Personally, I see potential in ResearchKit to solve the consent problem re medical data
ResearchKit may be part of the solution for some things, although the auth and data management will be barriers for commercial providers for the near future.
I have a small team that is working with leaders in the space[1] to help many of the major EMR vendors support an open-standards based approach to medical record sharing.
We'll be seeking public feedback when some of the preliminary work is ready, but are very excited to get input from the community as we make progress.
