An information security diagnostic of Electronic Data Capture Systems for the Personal Health Train

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Abstract

A Case Report Form (CRF) is a questionnaire mostly used in clinical trial research to collect patients' information. Electronic Case Report Form (eCRF) is taking the place of the normal paper CRF due to its digital convenience. An eCRF is a feature of an Electronic Data Capture (EDC) system and it collects users' information, which might be sensitive. This research aims to find appropriate EDC systems for the Personal Health Train (PHT). This platform enables organizations and researchers to work with health data from diverse sources without sharing these data. Therefore, it is necessary to ensure that the system is prepared for privacy and security regulations. Due to the diversity of privacy regulations worldwide, this research investigates whether the EDC systems comply with the European Union General Data Protection Regulation (GDPR). This paper presents a short review of the PHT concept, the role of the Findable, Accessible, Interoperable and Reusable (FAIR) data principles, potential risks, protection measures for hospital information systems. In our evaluation, we provided an overview of five EDC systems: Castor, OpenClinica, REDCap, NowEDC, and ShareCRF. We evaluated their security and privacy features and techniques to store data. A comparison of their features is given, and a preliminary usability test is presented.

Original languageEnglish
Title of host publicationProceedings - 2021 IEEE 25th International Enterprise Distributed Object Computing Conference Workshops, EDOCW 2021
Place of PublicationPiscataway, NJ
PublisherIEEE
Pages216-225
Number of pages10
ISBN (Electronic)978-1-6654-4488-0
ISBN (Print)978-1-6654-4489-7
DOIs
Publication statusPublished - 1 Dec 2021
EventIEEE 25th International Enterprise Distributed Object Computing Workshop, EDOCW 2021 - Gold Coast, Australia, Virtual Event, Australia
Duration: 25 Oct 202129 Oct 2021
Conference number: 25

Publication series

NameProceedings IEEE International Enterprise Distributed Object Computing Workshop (EDOCW)
PublisherIEEE
Volume2021
ISSN (Print)1541-7719
ISSN (Electronic)2325-6605

Conference

ConferenceIEEE 25th International Enterprise Distributed Object Computing Workshop, EDOCW 2021
Abbreviated titleEDOCW 2021
Country/TerritoryAustralia
CityVirtual Event
Period25/10/2129/10/21

Keywords

  • Case Report Form (CRF)
  • Electronic Data Capture (EDC)
  • GDPR
  • Health Care
  • Personal Health Train
  • Privacy
  • Security

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