We need to meet requirements for transparency and traceability in (big) data integration approaches for research purposes and for personalized optimisation of health care, while respecting the privacy and autonomy of the citizens.
The project connected Castor’s MyConsent portal with a prototype personal data station, implemented as FAIR data point. The PHT infrastructure will provide facilities to researchers (and other credible, authorized data consumers) to discover datasets of potential interest based on rich (but not privacy sensitive) metadata which describes the participant’s data(set). To access such datasets, the data owner’s permission is necessary. It was demonstrated that access is only provided if the participant responds positively to the researcher’s request for consent. This request is forwarded to them via MyConsent. This way, citizens will remain in control over their data, while use and analysis of this data for research and care is facilitated. The consent is dynamic, it can be given or retracted at any possible point in time. In the future, this setup should allow data owners to set generalised conditions for the use of their data, such as to allow the use of research data for all researchers from a specific research institute, or for research related to specific topics.
Most important results
A demonstrator of how dynamic consent can be implemented within the PHT infrastructure
Most important lessons learned
There are few technical hurdles to overcome. A major question remaining is how citizens should respond to incoming requests, in particular when there are many a day. It can be envisaged that the user can define settings per category of incoming requests and for the data elements in the personal data stations that can and those that cannot be accessed by incoming trains in the PHT infrastructure.
The solution is ready for reuse and implementation in other PHT projects.
Available references and materials
Personal locker consent demo using the FairData Point and the CASTOR system.
Background information and contact details
This demonstrator project was funded by BBMRI-NL. Main partners were LUMC and CastorEDC.
For more information contact Peter A.C. ’t Hoen (Projectlead, Radboudumc)