Health Research with Data in a Time of Privacy: Which Information do Patients Want?
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ABSTRACT:
SUBMITTER: Beusink M
PROVIDER: S-EPMC10496423 | biostudies-literature | 2023 Oct
REPOSITORIES: biostudies-literature
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Health Research with Data in a Time of Privacy: Which Information do Patients Want?
Beusink Miriam M Koetsveld Folkert F van Scheijen Sonja S Janssen Tomas T Buiter Maarten M Schmidt Marjanka K MK Rebers Susanne S
Journal of empirical research on human research ethics : JERHRE 20230612 4
When hospitals ask broad consent for the secondary use of patient data for scientific research, it is unknown for which studies the data will be used. We investigated what patients at a cancer hospital consider to be an adequate level and most suitable method of information provision using questionnaires (n = 71) and interviews (n = 24). A part of the respondents indicated that they would feel sufficiently informed by either being notified about potential further use, or by receiving a general b ...[more]
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