(In)formal rules and regulations for using Big Data
Ethical land legal aspects
Linking hospital data with data from other sources raises questions about the rules and regulations we have to comply with when using Big Data in healthcare. To find out what these questions are and what rules and regulations are involved, we conducted research that entailed interviewing 160 experts from eight countries and studying relevant documents on this topic. Our research revealed the questions considered relevant differ from country to country. The study additionally showed that there are differences in the legislation in place, how this legislation is applied, and how European legislation is interpreted. We also learned about how citizens and healthcare professionals view Big Data. Their perspective helped identify sensitive issues in this area.
ESHPM summarised the insights gained from this study in nine infographics. We made one infographic per country, with each infographic containing the key information for that specific country. We additionally made a single infographic comparing different countries based on five themes. The infographics can be used to:
- gain insight into which formal and informal rules and regulations for using Big Data technology are in place in different countries;
- develop business models for Big Data;
- gain insight into existing available infrastructure that could be used in the different countries.
This work package will be supervised by Dr. Rik Wehrens.