Parallel session 15.00 - 16.30

Conflicting? Big Data and Privacy

In May 2017, the WHO published a joint statement of 21 global funding organizations on public disclosure from clinical trials, affirming the following: "The prospective registration and timely public disclosure of results from all clinical trials is of critical scientific and ethical importance. Furthermore, timely results disclosure reduces waste in research, increases value and efficiency in use of funds and reduces reporting bias, which should lead to better decision-making in health."

There is indeed a global trend evident, with more and more players wanting to share and integrate clinical, biomedical/genomic, epidemiological, and patient-generated data. Integration and analysis of these data should eventually lead to improved health care delivery. The flip-side of this is that, even though the data are de-identified, there is an increased risk that the privacy of patients becomes compromised. This, together with the recent introduction of GDPR, means that hospitals are more reluctant, or at least more careful, in sharing clinical data.

This session will cover these conflicting elements. Two presentations will be given, one on the trend towards more and more sharing and integration of data; and the other on consequences, risks and precautions with regards to privacy. The two presentations will be followed by an interactive session, where the topics above are discussed with the audience. The discussion will also be triggered by asking for the audience's feedback on some related theses.

 

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