Skip to main content

Table 3 Summary of the main emerging arguments for and against sharing information about clinical data re-use with patients and the public

From: Kenyan health stakeholder views on individual consent, general notification and governance processes for the re-use of hospital inpatient data to support learning on healthcare systems

‘Sharing information is important’ ‘Sharing information is not (so) important’
Ownership/rights/trust in patient-physician relationships
• Individuals have a right to information e.g. as provided in the hospital service charter
• Existing nature of patient-physician relations is based on assumption that data are only used for patient care
• Rights persist even if data is de-identified
Demonstrating respect to patients
• As a way of respecting patients’ autonomy and preferences
Openness/nothing to hide/trust & accountability
• Important to demonstrate openness/nothing to hide
• Will ensure that better quality/more complete data available
• Wil provide reassurance/strengthen accountability for governance & of data re-use
• Patients will ‘feel good’
Building trust in health system
• Increased accountability will build trust in public health facilities & systems
• Will create partnership/sense of responsibility towards public health system
Normalizing clinical data re-use
• Increased acceptability of clinical data re-use over time
• Less resources needed for communication over time
Reduce risks of harm where data may be sensitive
• More important that patients know about data re-use if these may be ‘sensitive’
• Should be able to refuse re-use
• Can help to determine whether sensitive or not, since likely context related
Change in physician- patient relationship
• Physician no longer acting solely in patients’ interest, therefore important for patients to know
• Patients actively being involved in research as subjects
Data must be used for public good
• Used for planning and public health good, which outweighs individual rights to awareness/consent
Impact of refusals on public health planning
• Information sharing risks opt-out or refusals of clinical data re-use, which would importantly undermine public health services
• Particularly risky for public forms of engagement
• Likely to refuse where misconceptions /rumors arise about how data will be used
Extra resources needed in already overstretched systems/communication challenges
• Overstretched resources put under increased pressure through extra communication needs, risk undermining services
• May be very difficult to explain e.g. de-identification & future unknown research
• Consent may be meaningless in contexts of unmet health needs/asking patients for permission in resource limited settings might be perceived as coercive
Misunderstandings could impact services and trust in the health system
• Loss of trust may lead patients to withhold clinical information, refuse routine clinical tests/procedures and avoid care
• Misunderstanding / misconceptions could lead to loss of trust in public health systems
De-identified/aggregated data re-use not risky
• Minimal risk to patients in re-using aggregated/ de-identified data therefore patient engagement not seen as important.
• Examples of aggregated data already placed on hospital notice boards
Implicit consent already given by patients
• In choosing to attend public hospitals, patients give an implicit consent for their data to be re-used