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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