Guidance on how to de-identify health-related data in compliance with Swiss legislation
The de-identification of health-related data postulates one essential approach to protect patient privacy and is a prerequisite for data sharing among a broader research community. Even though there are international guidelines available concerning the de-identification of data, there is no hands-on guidance for the de-identification of health-related data specifically taking into account the Swiss law and data protection regulations.
The PHI Group has therefore launched the Data De-identification Project in October 2020. The recommendations were elaborated by the Data De-identification Project Task Force* in collaboration with additional Swiss university hospital representatives and legal opinion leaders, pooling experiences and knowledge regarding responsible data sharing.
A phased approach concept was developed, which does not only cover the mitigation of risk for re-identification but also considers the management of a de-identification process. This management provides for a verification and periodic review of the performed risk assessment. Based on the phased approach concept, recommendations were elaborated consisting of;
- the guidance document “Data de-identification – phased approach” outlining the legal context of de-identifying data in compliance with Swiss law and elaborating in three phases the de-identification process following a risk-based procedure.
- the “Template use case evaluation and risk assessment ” (Appendix A to the guidance document) providing hands-on support for defining project specific de-identification and re-identification risk.
More detailed information about the launched project can be found here.
* Members of the Task Force: Julia Maurer (Swiss Institute of Bioinformatics Personalized Health Informatics (PHI), Marc Vandelaer (wega Informatik AG), Jean-Louis Raisaro (CHUV), Katie Kalt (USZ), Antje Thien (USZ), Fabian Prasser (BHI at Charite, Germany), Bradley Malin (Vanderbilt University, USA).