A survey on the current status and future perspective of informed consent management in the MIRACUM consortium of the German Medical Informatics Initiative

被引:0
作者
Christopher Hampf
Martin Bialke
Lars Geidel
Albert Vass
Thomas Bahls
Romina Blasini
Arne Blumentritt
Martin Boeker
Christian Bruns
Burkhard Jandrig
Maximilian Fünfgeld
Philipp Heinrich
Torsten Leddig
Achim Michel-Backofen
Anna Pirkl
Michael Rautenberg
Fabian Simons
Dana Stahl
Hans-Ulrich Prokosch
Wolfgang Hoffmann
机构
[1] University Medicine Greifswald,Institute for Community Medicine
[2] Trusted Third Party of the University Medicine Greifswald,Institute of Medical Informatics
[3] Justus-Liebig-University Giessen - Medicine Faculty,Faculty of Medicine and Medical Center, Institute of Medical Biometry and Statistics
[4] University of Freiburg,Institute for Biometrics and Medical Informatics
[5] Otto-von-Guericke University Magdeburg,Department of Urology
[6] University Medical Center Magdeburg,Heinrich
[7] University Medicine Mannheim,Lanz
[8] Technische Universität Dresden,Center for Digital Health
[9] University Hospital Giessen and Marburg,Unabhängige Treuhandstelle Dresden, Bereich Medizin
[10] Universitätsklinikum Erlangen,Medical Center for Information and Communication Technology
[11] University of Freiburg,Medical Center
[12] Philipps-Universität Marburg,Dataintegrationcentre
[13] Friedrich-Alexander-Universität Erlangen-Nürnberg,Chair of Medical Informatics
关键词
Consent management; Informed consent; General data protection regulation; GDPR; Medical informatics initiative; MIRACUM;
D O I
10.1186/s41231-021-00086-1
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  • [1] Prokosch HU(2018)MIRACUM: medical informatics in research and care in university medicine Methods Inf Med 57 e82-e91
  • [2] Acker T(2018)HiGHmed - an open platform approach to enhance care and research across institutional boundaries Methods Inf Med 57 e66-e81
  • [3] Bernarding J(2018)Smart Medical Information Technology for Healthcare (SMITH) Methods Inf Med 57 e92-e105
  • [4] Binder H(2018)Data Integration for Future Medicine (DIFUTURE) Methods Inf Med 57 e57-e65
  • [5] Boeker M(2019)Erster Schritt: Im Rahmen der Medizininformatik-Initiative des Bundesforschungsministeriums ist eine elektronische Abbildung von Informationen aus Patienten-Einwilligungserklärungen entwickelt worden E-Health-Com 2_3 50-53
  • [6] Boerries M(2020)Towards a comprehensive and interoperable representation of consent-based data usage permissions in the German medical informatics initiative BMC Med Inform Decis Mak 20 103-274
  • [7] Haarbrandt B(2020)The generic Informed Consent Service gICS®: implementation and benefits of a modular consent software tool to master the challenge of electronic consent management in research J Transl Med 18 287-371
  • [8] Schreiweis B(2018)MAGIC: once upon a time in consent management-a FHIR® tale J Transl Med 16 256-382
  • [9] Rey S(2010)Privacy by design Identity Inf Soc 3 267-447
  • [10] Sax U(2014)Cohort profile: Greifswald approach to individualized medicine (GANI_MED) J Transl Med 12 144-undefined