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Health Research with Data in a Time of Privacy: Which Information do Patients Want?

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 questionn...

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Autores principales: Beusink, Miriam, Koetsveld, Folkert, van Scheijen, Sonja, Janssen, Tomas, Buiter, Maarten, Schmidt, Marjanka K, Rebers, Susanne
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10496423/
https://www.ncbi.nlm.nih.gov/pubmed/37309128
http://dx.doi.org/10.1177/15562646231181439
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author Beusink, Miriam
Koetsveld, Folkert
van Scheijen, Sonja
Janssen, Tomas
Buiter, Maarten
Schmidt, Marjanka K
Rebers, Susanne
author_facet Beusink, Miriam
Koetsveld, Folkert
van Scheijen, Sonja
Janssen, Tomas
Buiter, Maarten
Schmidt, Marjanka K
Rebers, Susanne
author_sort Beusink, Miriam
collection PubMed
description 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 brochure before being asked for consent. Others stated that additional information would be interesting and appreciated. Yet, when discussing required resources needed to provide additional information, interviewees lowered the bar of what they considered minimally required, voicing the importance of spending resources on research.
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spelling pubmed-104964232023-09-13 Health Research with Data in a Time of Privacy: Which Information do Patients Want? Beusink, Miriam Koetsveld, Folkert van Scheijen, Sonja Janssen, Tomas Buiter, Maarten Schmidt, Marjanka K Rebers, Susanne J Empir Res Hum Res Ethics Empirical Studies in Research Ethics 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 brochure before being asked for consent. Others stated that additional information would be interesting and appreciated. Yet, when discussing required resources needed to provide additional information, interviewees lowered the bar of what they considered minimally required, voicing the importance of spending resources on research. SAGE Publications 2023-06-12 2023-10 /pmc/articles/PMC10496423/ /pubmed/37309128 http://dx.doi.org/10.1177/15562646231181439 Text en © The Author(s) 2023 https://creativecommons.org/licenses/by-nc/4.0/This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Empirical Studies in Research Ethics
Beusink, Miriam
Koetsveld, Folkert
van Scheijen, Sonja
Janssen, Tomas
Buiter, Maarten
Schmidt, Marjanka K
Rebers, Susanne
Health Research with Data in a Time of Privacy: Which Information do Patients Want?
title Health Research with Data in a Time of Privacy: Which Information do Patients Want?
title_full Health Research with Data in a Time of Privacy: Which Information do Patients Want?
title_fullStr Health Research with Data in a Time of Privacy: Which Information do Patients Want?
title_full_unstemmed Health Research with Data in a Time of Privacy: Which Information do Patients Want?
title_short Health Research with Data in a Time of Privacy: Which Information do Patients Want?
title_sort health research with data in a time of privacy: which information do patients want?
topic Empirical Studies in Research Ethics
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10496423/
https://www.ncbi.nlm.nih.gov/pubmed/37309128
http://dx.doi.org/10.1177/15562646231181439
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