Health Research with Data in a Time of Privacy: Which Information do Patients Want?
Miriam BeusinkFolkert KoetsveldSonja van ScheijenTomas JanssenMaarten BuiterMarjanka K SchmidtSusanne RebersPublished in: Journal of empirical research on human research ethics : JERHRE (2023)
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.
Keyphrases
- health information
- big data
- electronic health record
- end stage renal disease
- healthcare
- ejection fraction
- chronic kidney disease
- newly diagnosed
- peritoneal dialysis
- papillary thyroid
- machine learning
- palliative care
- case report
- prognostic factors
- patient reported outcomes
- emergency department
- squamous cell
- deep learning
- high resolution
- drug induced
- high speed
- adverse drug
- case control
- childhood cancer