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

Personalized medicine genomic sequencing patient empowerment technology acceptance

Journal

Studies in health technology and informatics
ISSN: 1879-8365
Titre abrégé: Stud Health Technol Inform
Pays: Netherlands
ID NLM: 9214582

Informations de publication

Date de publication:
16 Jun 2020
Historique:
entrez: 24 6 2020
pubmed: 24 6 2020
medline: 22 8 2020
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 32570544
pii: SHTI200324
doi: 10.3233/SHTI200324
doi:

Types de publication

Journal Article

Langues

eng

Pagination

1061-1065

Auteurs

Lena Griebel (L)

Chair of Medical Informatics, Friedrich-Alexander-University Erlangen-Nürnberg, Erlangen.

Marc Hinderer (M)

Chair of Medical Informatics, Friedrich-Alexander-University Erlangen-Nürnberg, Erlangen.

Ali Amr (A)

Department of Medicine III, University of Heidelberg, Heidelberg.

Benjamin Meder (B)

Department of Medicine III, University of Heidelberg, Heidelberg.

Marc Schweig (M)

Backes: SRT GmbH, Saarbrücken.

Dominic Deuber (D)

Chair of Applied Cryptography, Friedrich-Alexander-University Erlangen-Nürnberg, Nürnberg.

Christoph Egger (C)

Chair of Applied Cryptography, Friedrich-Alexander-University Erlangen-Nürnberg, Nürnberg.

Claudia Kawohl (C)

CISPA Helmholtz Center for Information Security, Saarbrücken.

Annika Krämer (A)

CISPA Helmholtz Center for Information Security, Saarbrücken.

Isabell Flade (I)

CeGaT GmbH, Tübingen.

Dominique Schröder (D)

Chair of Applied Cryptography, Friedrich-Alexander-University Erlangen-Nürnberg, Nürnberg.

Hans-Ulrich Prokosch (HU)

Chair of Medical Informatics, Friedrich-Alexander-University Erlangen-Nürnberg, Erlangen.

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Classifications MeSH