Current research on several fields is more and more depending on availability of suitable data. Especially research that studies humans and human activity often need data that contains information of individuals in various forms. Such data is referred to as sensitive data. Notably in biomedical sciences this is a pressing issue, but concerns also several other fields. The use of sensitive data for research holds great promises for improving the health and well-being of people, so there is large motivation to make also sensitive data available for researchers. On the other hand, the privacy of individuals need to be preserved and all legislation and regulations need to be followed. In practice the research communities need advanced IT services that implement the requirements of legislation, so that they can conduct their research.
In the Nordic countries the national nodes of the ELIXIR research infrastructure are working together to solve bottlenecks in using sensitive data for research across borders. Together with NeIC they have launched the Tryggve project, that includes secure service providers from Finland, Sweden, Norway and Denmark.
This workshop will contain presentations on various aspects relating to use of sensitive data in research, including secure IT services and highlights of the outcomes of the Nordic Tryggve project, ethical and legal issues regarding the use of sensitive data, as well as researchers’ presentations on how the research data is currently being managed in the research community. There will be time reserved for discussion and questions & answers after the presentations. The participants will gain more understanding on the conditions of using sensitive data and on the solution that implement them.
Format: The workshop programme will feature presentations on the above mentioned topics: secure IT services, related ethics and legal topics, user stories, and technical topics. A report on the current status of sensitive data topics in the Nordic countries will be jointly prepared based on the workshop.
Lightning talks (12+3 mins each)