The Patient as Genomic Data Manager - Evaluation of the PROMISE App

Griebel L, Hinderer M, Amr A, Meder B, Schweig M, Deuber D, Egger C, Kawohl C, Krämer A, Flade I, Schröder D, Prokosch HU (2020)

Publication Type: Book chapter / Article in edited volumes

Publication year: 2020

Publisher: IOS Press

Edited Volumes: Digital Personalized Health and Medicine

Series: Studies in Health Technology and Informatics

City/Town: Amsterdam, Berlin, Washington

Book Volume: 270

Pages Range: 1061-1065

ISBN: 978-1-64368-083-5

DOI: 10.3233/SHTI200324

Abstract

PROMISE (Personal Medical Safe) was a German research project which aimed to provide the responsibility of genomic data to the patient via a mobile app. The patient should accept or decline study requests to use his/her genomic data via the app. In the evaluation of the app the experiences with mobile health as well as the opinion on being the genomic data manager were measured. Furthermore, the test patients were asked about their opinion and their concerns on the PROMISE app. Most of the 19 test patients were aware of the high sensibility of genomic data and thought that the PROMISE app was a suitable solution. The largest part found it good that they were the responsible data owner. However, several participants also found it important to have a permanent contact person when it comes to questions on inquiries or the app.

Authors with CRIS profile

Lena Griebel Lehrstuhl für Medizinische Informatik Marc Hinderer Lehrstuhl für Medizinische Informatik Dominic Deuber Lehrstuhl für Informatik 13 (Angewandte Kryptographie) Christoph Egger Lehrstuhl für Informatik 13 (Angewandte Kryptographie) Dominique Schröder Lehrstuhl für Informatik 13 (Angewandte Kryptographie) Hans-Ulrich Prokosch Lehrstuhl für Medizinische Informatik

Involved external institutions

CISPA − Helmholtz-Zentrum für Informationssicherheit DE Germany (DE) CeGaT GmbH DE Germany (DE) Ruprecht-Karls-Universität Heidelberg DE Germany (DE) Backes SRT GmbH DE Germany (DE)

How to cite

APA:

Griebel, L., Hinderer, M., Amr, A., Meder, B., Schweig, M., Deuber, D.,... Prokosch, H.-U. (2020). The Patient as Genomic Data Manager - Evaluation of the PROMISE App. In Louise B. Pape-Haugaard, Christian Lovis, Inge Cort Madsen, Patrick Weber, Per Hostrup Nielsen, Philip Scott (Eds.), Digital Personalized Health and Medicine. (pp. 1061-1065). Amsterdam, Berlin, Washington: IOS Press.

MLA:

Griebel, Lena, et al. "The Patient as Genomic Data Manager - Evaluation of the PROMISE App." Digital Personalized Health and Medicine. Ed. Louise B. Pape-Haugaard, Christian Lovis, Inge Cort Madsen, Patrick Weber, Per Hostrup Nielsen, Philip Scott, Amsterdam, Berlin, Washington: IOS Press, 2020. 1061-1065.

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