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Taking a Value Perspective on Medical Data Donation Through Participatory Workshops

Müller-Birn, Claudia; Leimstädtner, David; Sörries, Peter – 2022

Clinical patient data is a valuable resource for data-driven medical research. However, discussions around personal data privacy highlight the urgency of designing user interfaces that communicate the possibilities and limitations of the data security used when sharing personal health data. To better understand patients’ values regarding medical data sharing, we developed a methodical approach for value-centered participatory workshops. This approach is inspired by two strains, value-sensitive design and reflective design, to reveal values related to a data donation process in the medical field. The data collected in the workshop (the first of three) will be used to derive design recommendations to improve data donation processes.

Title
Taking a Value Perspective on Medical Data Donation Through Participatory Workshops
Author
Müller-Birn, Claudia; Leimstädtner, David; Sörries, Peter
Publisher
Gesellschaft für Informatik e.V.
Date
2022
Source(s)
Appeared in
Mensch und Computer 2022 - Workshopband
Type
Text
BibTeX Code
@inproceedings{mci/Müller-Birn2022,
author = {Müller-Birn, Claudia AND Leimstädtner, David AND Sörries, Peter},
title = {Taking a Value Perspective on Medical Data Donation Through Participatory Workshops},
booktitle = {Mensch und Computer 2022 - Workshopband},
year = {2022},
editor = {Marky, Karola AND Grünefeld, Uwe AND Kosch, Thomas} ,
doi = { 10.18420/muc2022-mci-ws02-235 },
publisher = {Gesellschaft für Informatik e.V.},
address = {Bonn}
}