Open the data, empower the patient

patient empowerment

Despite the occasional backlash, open clinical research architectures remain on the agenda of healthcare systems in more and more countries in Europe. These architectures are about making real-world patient data available for medical research and quality control, and about incorporating new data sources, in particular genomic information. The key to success, many argue, is patient ownership of data combined with as much transparency for the individual as possible.

The closure of the British care.data programme in the summer of 2016 might not have come as a surprise. But it resonated across Europe, nevertheless, especially in countries in which politicians or healthcare leaders are thinking in similar directions, or are indeed already working on similar programmes. This is true for Germany, where the national Ministry of Research has initiated a lavish medical informatics funding programme, that has been running for four years, that aims at creating supra-regional networks of hospitals that pool data virtually in order to implement various big data use cases. It is also true for both Estonia and Switzerland, where the governments have embarked on building research infrastructures that not only network medical institutions but also connect them to genomic databases provided by national or institutional biobanks.

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