The way to data: opinions and recommendations for the provision of health data for secondary use
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 place of work:
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 the journal:
Čas. Lék. čes. 2023; 162: 61-66
Category:
Summary
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
Zdroje
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Štítky
Addictology Allergology and clinical immunology Angiology Audiology Clinical biochemistry Dermatology & STDs Paediatric gastroenterology Paediatric surgery Paediatric cardiology Paediatric neurology Paediatric ENT Paediatric psychiatry Paediatric rheumatology Diabetology Pharmacy Vascular surgery Pain management Dental HygienistČlánok vyšiel v časopise
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