Taking patient involvement seriously: a critical ethical analysis of participatory approaches in data-intensive medical research.

Katharina BeierMark SchwedaSilke Schicktanz

Published in: BMC medical informatics and decision making (2019)

Based on the conceptual distinctions introduced, we formulate basic criteria for justified appeals to participatory approaches in HBDR and data-intensive research in medicine and healthcare in order to overcome these shortcomings. As we suggest, this is not only a matter of conceptual clarity, but a crucial requirement for maintaining ethical standards and trust in HBDR and related medical research.

Keyphrases

healthcare
electronic health record
big data
decision making
health information
data analysis
deep learning