The way to data: opinions and recommendations for the provision of health data for secondary use

Czech version

Authors: Aleš Tichopád ¹; Martin Augustynek ²; Jiří Beneš ³; Martin Dlouhý ⁴; Tomáš Doležal ^5,6; Dana Horáková ⁷; Michal Kršek ⁸; Lenka Lhotská ⁹; Petr Panzner ¹⁰; Marek Penhaker ²; Miroslav Petr ¹¹; Jan Piťha ¹²; Boris Popesko ¹³; Martin Rožánek ¹; Miloš Táborský ¹⁴; Michal Vrablík ⁸
Authors‘ workplace: Katedra biomedicínské techniky FBMI ČVUT v Praze ¹; Katedra kybernetiky a biomedicínského inženýrství FEI VŠB – TU, Ostrava ²; Ústav biofyziky a informatiky 1. LF UK v Praze ³; Katedra ekonometrie FIS VŠE v Praze ⁴; Institut pro zdravotní ekonomiku a technology assessment (iHETA), Praha ⁵; Farmakologický ústav LF MU v Brně ⁶; Neurologická klinika a Centrum klinických neurověd 1. LF UK a VFN v Praze ⁷; 3. interní klinika – klinika endokrinologie a metabolismu 1. LF UK a VFN v Praze ⁸; Katedra přírodovědných oborů FBMI ČVUT v Praze ⁹; Ústav imunologie a alergologie LF UK a FN Plzeň ¹⁰; Katedra medicínského základu v kinantropologii FTVS UK v Praze ¹¹; Laboratoř pro výzkum aterosklerózy, IKEM, Praha ¹²; Ústav podnikové ekonomiky FME UTB ve Zlíně ¹³; I. interní klinika – kardiologická LF UP a FN Olomouc ¹⁴
Published in: Čas. Lék. čes. 2023; 162: 61-66
Category:

Overview

Healthcare data held by state-run organisations is a valuable intangible asset for society. Its use should be a priority for its administrators and the state. A completely paternalistic approach by administrators and the state is undesirable, however much it aims to protect the privacy rights of persons registered in databases. In line with European policies and the global trend, these measures should not outweigh the social benefit that arises from the analysis of these data if the technical possibilities exist to sufficiently protect the privacy rights of individuals. Czech society is having an intense discussion on the topic, but according to the authors, it is insufficiently based on facts and lacks clearly articulated opinions of the expert public. The aim of this article is to fill these gaps.

Data anonymization techniques provide a solution to protect individuals' privacy rights while preserving the scientific value of the data. The risk of identifying individuals in anonymised data sets is scalable and can be minimised depending on the type and content of the data and its use by the specific applicant. Finding the optimal form and scope of deidentified data requires competence and knowledge on the part of both the applicant and the administrator. It is in the interest of the applicant, the administrator, as well as the protected persons in the databases that both parties show willingness and have the ability and expertise to communicate during the application and its processing.

Keywords:

health data – anonymization – de-identification – EHDS – GDPR

Sources

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