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.
The report describes the outcomes of the investigation into four significant services that are emerging in parallel and that allow individuals to access, share and use health data, i.e. online portals run by healthcare institutions (which offer patients a ‘view’ into their own medical records and supporting digital programmes), health apps (‘digital coaches’), personal health environments (PHEs, a personal data vault Health at the centre 15 in which people can store and manage all their health data digitally from a single comprehensive overview), and public platforms (collective online databases, where people can share stories and health data with others).