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. 2023 Oct;18(4):304-316.
doi: 10.1177/15562646231181439. Epub 2023 Jun 12.

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

Miriam Beusink  1   2 , Folkert Koetsveld  1   3 , Sonja van Scheijen  1 , Tomas Janssen  1   3 , Maarten Buiter  1   3 , Marjanka K Schmidt  1 , Susanne Rebers  1   2
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Health Research with Data in a Time of Privacy: Which Information do Patients Want?

Miriam Beusink et al. J Empir Res Hum Res Ethics. 2023 Oct.

Abstract

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.

Keywords: patient information; research information; return of general research results; secondary use of health data; transparency.

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Figures

Figure 1.
Figure 1.
Timing, level of specificity and concrete examples of information provision presented to the respondents in the questionnaires and interviews.
Figure 2.
Figure 2.
Visualization of inductive qualitative methods: themes and subthemes that arose when interviewees voiced their wishes regarding information given about research.
See this image and copyright information in PMC

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