Forum "Clinical Research"
Charting new waters: navigating towards good clinical research data governance
What is the current level of organisation of clinical research data at the SCTO member hospitals? How is this done abroad? How and by whom should patients and the public be informed about how their data is governed? And above all, how can we combine our skills and strategies, getting all hands on deck to forge constructive and consolidated, yet innovative headway in this realm? Close to 90 participants tackled these and other important questions on 30 January 2019 at the 9th Forum “Clinical Research” in Bern.
A summary report of the Forum 2019, the full programme (in German and French) and the presentations are available below.
As is our Forum tradition, we first highlighted a case study from abroad: an example from the UK of how patient data is currently used. With the engagement of patients and the public, real-world evidence is created to serve public wellbeing.
Next we explored the national landscape, in particular the Swiss Personalized Health Network’s approach to a governance and quality management system, to facilitate the exchange of patient-related data for research. This was followed by input from the differing points of view of several Swiss stakeholders, including data donors, clients, and regulatory bodies.