Data protection

Available at: http://urn.fi/URN:ISBN:978-952-302-700-8 Based on EHES Manual, Part A. Planning and preparation of the survey, 2nd edition (2016) Available at: http://urn.fi/URN:ISBN:978-952-302-700-8 These slides can be used freely, translated and adapted to national use (e.g. concerning national sampling frames and sample selection criteria).

Aspects of safeguarding of privacy (1) Data access: who is allowed to see all of the data a limited number of persons are allowed to access a database that includes identification data, such as names and dates of birth Data exchange: with whom the data can be shared Record linkage: how the linkage is done and registers covered (for example existing health registers)

Aspects of safeguarding of privacy (2) Anonymization: ensuring that the individual cannot be identified Duration of storage of data: how long data can be kept in a database Identification, use, and storage of biological samples

Anonymization The person cannot be identified, whether by the data controller or by any other person Taking into account of all the means likely reasonable to be used either by the controller or any other person to identify that individual (Working Partly of the protection of individuals with regard to the processing of personal data, Article 29)

Safeguarding of privacy Data protection (1) Personal Data Direct: everything that identifies an individual Indirect: information that can be combined with other information to identify specific individuals Reference to an identification number or to one or more factors specific to his/her physical, physiological, mental, economic, cultural or social identity (Regulation (EU) 2016/679 of the European Parliament and of the Council)

Safeguarding of privacy Data protection (2) Data collected for HES are “personal” and thus must be safeguarded, e.g. by Using survey specific subject ID or barcode in questionnaires and samples No personal identification included in the questionnaire documents and samples Computers and servers locked from others than authorized persons No survey data kept or archived in personal user directories Encrypted transfer for electronic data The survey protocol should comply with national legislation (“Data Protection Act” or “Personal Data Act”)

Acknowledgements Slides prepared by: Laura Paalanen and Päivikki Koponen Experiences and feedback from the EHES network have been utilized in the preparation of these slides Cover picture: http://ec.europa.eu/justice/data-protection/individuals/index_en.htm Funding: Preparation of the slides is part of the activities of the EHES Coordinating Centre which has received funding from the EC/DG SANTÉ in 2009-2012 through SANCO/2008/C2/02-SI2.538318 EHES and Grand Agreement number 2009-23-01, and in 2015-2017 through Grand Agreement number 664691/BRIDGE Health

Disclaimer The views expressed here are those of the authors and they do not represent the Commission’s official position.