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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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2023
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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. |
format | Online Article Text |
id | pubmed-10496423 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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