Collaboration for securely searching health data for research

Jón Atli Benediktsson, Rector of the University of Iceland, Alma Möller, Director of Health, and Þórólfur Guðnason, Chief Epidemiologist, signed a cooperative agreement at the beginning of the week which will make it easier for researchers at the University of Iceland to search health data from the Director of Health and the Chief Epidemiologist in connection with scientific research. 

The collaboration centres around Heilsubrunnur, which is a health science data query system run by the University of Iceland Health Science Institute. The system makes it easier for researchers to submit simultaneous queries in many different search systems containing mirrored and encrypted data from partners of Heilsubrunnur. It has been developed in full consideration of both the Data Protection Act and the law on scientific research in the health sector.

This collaboration will be hugely beneficial because the Directorate of Health keeps records pertaining to health and disease at the national level, as they are required to do by law. These records could be used to conduct important research in the health sciences.

Health data is not by its nature considered sensitive personal data, but in accordance with the agreement no such data will be stored, combined or cross-referenced in Heilsubrunnur; it will only be possible to make queries through the search system. Queries will only be made in the records or databases of the Directorate of Health, in accordance with researchers' requests, and results will be in numerical form only. In addition, all researchers who wish to use the data must have the necessary permits from the National Bioethics Committee, the parties responsible for the records and, as applicable, the Data Protection Authority.

The agreement also stipulates that the Directorate of Health may use Heilsubrunnur for scientific research, either independently or in collaboration with other specialists, as well as for quality assurance.
A three-member working group, comprising representatives from Heilsubrunnur, the University of Iceland and the Directorate of Health, will manage the collaboration, which has no end date.
Also attending the signing of the agreement, which took place on Directorate of Health premises, were Inga Þórsdóttir, dean of the University of Iceland School of Health Sciences, and Sigríður Haraldsd. Elínardóttir and Guðrún Kr. Guðfinnsdóttir from the Directorate of Health.