Let's make stone soup!
Once upon a time, a group of hungry travellers arrived at a village carrying just an empty cooking pot. They asked for food from the villagers, but none of them wanted to share their data, I mean food. The travellers filled the cooking pot with water and a stone. A curious villager asked what they were making. "Stone soup", answered a traveller, "it is going to be delicious, but it could use some garnish to improve the flavour..." The villager left and came back with some carrots in the hope he could also taste this ‘stone soup’. The carrots were added to the soup, and more and more villagers became curious and started to bring more garnishes. Finally, the stone was removed and the resulting soup was shared among travellers and villagers alike. Without being aware of it, the villages were tricked into sharing their food and they all profited from doing so.
In this workshop we aim to discuss what would be needed to bridge the gap between clinical practice and bioinformatics research to allow for joining forces and make this ‘stone soup’. In difficult to solve patient cases, especially in rare diseases, but also in cancer, clinical colleagues across the country or even the world are already being consulted and patient information is being shared. What can we learn from how data sharing currently goes in clinical practice? In bioinformatics, tools are being developed and new insights into cancer and other diseases are gained based on patient data. However, how do we ensure that the results get used in clinical practice and do not linger for eternity in the theoretical world? How do we compete with well-established methods from, for example, the field of pathology? When patient data is shared with the world of research, how do we ensure both sides profit from it?
The Agenda
14:00–14:20 Welcome
14:20–14:40 David Torrents, Barcelona Supercomputing Center, Barcelona/ Lincoln Stein, Ontario Institute of Cancer Research, Toronto “EUCANCan summary”
14:40–15:00 Jeroen Belien, Amsterdam University Medical Center, Amsterdam “The 1+Million Genomes Ontology Working Group and Data Sharing in the Netherlands”
15:00–15:20 Rodrigo Dienstmann, Vall D'Hebron Institute of Oncology, Barcelona “Title to be announced”
15:20–15:40 Manuel Rueda, Centro Nacional de Análisis Genómico, Barcelona “Harmonization of clinical data with Convert-Pheno”
15:40–16:00 Break
16:00–16:20 Teresa Garcia, Arnau Soler, Centre for Genomic Regulation, Barcelona “BeaconV2”
16:20–16:40 Steven Laurie, Centro Nacional de Análisis Genómico, Barcelona “The RD Connect Genome Phenome Analysis Platform (GPAP)”
16:40–17:00 Nuria Lopez-Bigas, Institute for Research in Biomedicine, Barcelona “CGI-Clinics”
17:00–17:40 Panel Discussion