Use of Personal Health Data in Research and Development in EU

Use of Personal Health Data in Research and Development in EU - Future Perspectives, June 14, 2021.

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The access to reliable health data is crucial for novel health related research, development and innovation. Recently, the possibilities to utilize data sources have increased along with local digital health information systems, biobanks, national health information exchanges and other related national registries. At the same time, special attention is required in order to take care of data safety and ownership of sensitive personal data.

Major issues remain: how to facilitate modern data processing and analysis like artificial intelligence, how to facilitate national and international collaboration and how to facilitate interdisciplinary innovation? Finland has been in the forefront preparing new legislation in this field, but there are serious concerns among the research community. There are also new challenges in the international arena and European Union has started new initiatives to tackle the issue of a common European Data Space.

Please join the seminar and listen to experts and participate discussions in these items. We are expecting a lively conversation about this hot topic!

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9.00 – 9.10 Opening words: Vice rector, Prof. Taina Pihlajaniemi, University of Oulu

9.10 – 10.00 Keynote speakers from the European Comission, Digital Health,– DG Health and Food Safety (DG SANTE):

Policy Officers Konstantin Hyppönen and Ander Elustondo-Jauregui: “Towards a common European Health Data Space”

10.00 – 11.00 FinData: Chief Metadata Specialist Peija Haaramo: ”Data Permit Authority fostering the secondary use of Finnish health and social data

11.00 – 11.50 SITRA: Project Director Markus Kalliola: ”Results from TEHDAS project

11.50 – 12.30 Discussion: Chaired by Prof Johannes Kettunen, University of Oulu

12.30 – 13.30 Lunch break

13.30 – 14.00 VTT: Principal Scientist (Lic.Tech.) Jaakko Lähteenmäki: “PreMed project

14.00 – 14.30 CSC – IT Center for Science: Dr. Tommi Nyrönen, Director, Elixir Finland Head of Node: “Genomic Data Space – potential roles for Finland in Digital Europe e-Infrastructures to support sensitive data governance and processing”

14.30 – 14.45 Coffee break

14.45 – 15.30 University of Helsinki: Legal Counsel Alexander Bützow: “Secondary law from the juridical point of view for the researcher

15.30 – 15.45 Biobank Borealis of Northern Finland: Project Manager, Docent Pia Nyberg: ”Biobank Borealis – Part of the Finnish Biobank Ecosystem

15.45 – 16.10 General discussion

16.10 – 16.15 Closing words: Prof. Simo Saarakkala, University of Oulu

Last updated: 3.6.2021