I do agree with all your statements, including who is responsible for making the best out of the health data we already have at the moment. Despite governance should be at the institutional level, citizens can play an important role if they have the means to share their own health data for better care and better research.
The project InteropEHRate is developing open specifications to allow citizens to access, control and share their data with other health care providers or research centres, even cross-borders. You can find more information on the White Paper “Unleashing personal health data for care and research: the InteropEHRate approach” that was recently published.
Of course, the governance question remains valid. Who will encourage the adoption of these types of protocols? Will they be healthcare organizations? Or European/national/regional health authorities?