2.3. Creation of trust centres

2.3. Creating trust centres

Health data in particular is an area which calls for an exceptionally high level of protection. The responsible handling of data, the protection of privacy rights and the guarantee of IT security are therefore indispensable.

A 2016 survey carried out by TNS Infratest revealed that 61 percent of all Europeans would be willing to make their anonymized data available for research purposes. 13 However, this is hardly possible on account of the purpose-related restrictions governing consent to data processing within the framework of the EU GDPR. In a first step the EU member states should collect health data in accordance with a standardised approach. This data could subsequently be placed at the disposal of a socalled trust centre.

A trust centre links health data from several heterogeneous and geographically dispersed data sources and conducts a structured processing into large data sets. In addition, a trust centre offers services with regard to data quality, data processing and the data management of health data and makes them available in high quality for use. This makes it possible for the health industry and other research institutions to make use of high-quality, structurally processed and up to date health data for research and development. Technologically, many deployment models and platform services are possible for implementing a trust centre. Yet all this is currently not possible on account of diverse barriers, although it could be technologically realisable.

In the long term a Europe-wide uniform solution for trust centres is desirable in order to accelerate and expand cross-border access to data. However, in order for this to be achieved, separate data collection systems should be better coordinated and their data sets harmonised. Here close cooperation among the EU member states is crucial. A European campaign to boost the readiness of citizens to make their data available can provide additional support for this project.

Central recommendation:

▪ In the long term a Europe-wide uniform solution for trust centres assists in enabling the cross-border exchange of health data.

13 TNS Infratest (January 2016): https://www.vodafone-institut.de/wp-content/uploads/2016/01/VodafoneInstitute-Survey-BigData-en.pdf