Report of the Rathenau Institute:
Health at the centre - Responsible data sharing in the digital society
Responsible and secure data sharing is best achieved by remaining small in scale and by focusing on what is truly necessary
"The digitisation of health data creates opportunities for more personalised healthcare and prevention. When combined, different digital services make it possible to access, share and use electronic health data, including outside the healthcare domain. The public and political discussion no longer centres on the mere digitisation of patient records. A further aim is to activate people to work on improving their health using their own data. The expectation is that by controlling their data, people will be able to take charge of their healthcare.
At the same time, it remains to be seen whether this will lead to better healthcare advice, whether people will actually manage their health better, and whether it is even desirable for them to control more of their data. This report shows that responsible and secure data sharing is best achieved by remaining small in scale and by focusing on what is truly necessary. It gives government, the healthcare sector and policymakers the tools they need to ensure that digital health data services are used for the benefit of a ‘socially responsible digital society’. The quality of the data and of good and appropriate healthcare are at the centre here, with people being protected against the unwanted use of their data."
You can read the full document here