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

Authors

Lena Griebel ¹ , Marc Hinderer ¹ , Ali Amr ² , Benjamin Meder ² , Marc Schweig ³ , Dominic Deuber ⁴ , Christoph Egger ⁴ , Claudia Kawohl ⁵ , Annika Krämer ⁵ , Isabell Flade ⁶ , Dominique Schröder ⁴ , Hans-Ulrich Prokosch ¹

Chair of Medical Informatics, Friedrich-Alexander-University Erlangen-Nürnberg, Erlangen.
Department of Medicine III, University of Heidelberg, Heidelberg.
Backes: SRT GmbH, Saarbrücken.
Chair of Applied Cryptography, Friedrich-Alexander-University Erlangen-Nürnberg, Nürnberg.
CISPA Helmholtz Center for Information Security, Saarbrücken.
CeGaT GmbH, Tübingen.

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.

Keywords: Personalized medicine; genomic sequencing; patient empowerment; technology acceptance.

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

Lena Griebel ¹ , Marc Hinderer ¹ , Ali Amr ² , Benjamin Meder ² , Marc Schweig ³ , Dominic Deuber ⁴ , Christoph Egger ⁴ , Claudia Kawohl ⁵ , Annika Krämer ⁵ , Isabell Flade ⁶ , Dominique Schröder ⁴ , Hans-Ulrich Prokosch ¹

Abstract

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

Lena Griebel 1 , Marc Hinderer 1 , Ali Amr 2 , Benjamin Meder 2 , Marc Schweig 3 , Dominic Deuber 4 , Christoph Egger 4 , Claudia Kawohl 5 , Annika Krämer 5 , Isabell Flade 6 , Dominique Schröder 4 , Hans-Ulrich Prokosch 1

Abstract

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Unser Portfolio

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Lena Griebel ¹ , Marc Hinderer ¹ , Ali Amr ² , Benjamin Meder ² , Marc Schweig ³ , Dominic Deuber ⁴ , Christoph Egger ⁴ , Claudia Kawohl ⁵ , Annika Krämer ⁵ , Isabell Flade ⁶ , Dominique Schröder ⁴ , Hans-Ulrich Prokosch ¹