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Table 4 Complexities seen for patient autonomy in routine public health reporting

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

Example 1 Multiple drug-resistant TB cases: Where exact information on the patient’s location (residence) must be shared to allow adequate follow up. This type of reporting would be done without seeking the patient’s permission or necessarily informing them that the report had been made. Any infringement of rights to confidentiality or increased risks of stigma in this case were felt to be reasonable given the wider public health benefits as well as the individual’s own health risks. Example 2 Rare diseases: In routine reporting or publishing on cases of rare diseases, an issue raised by a hospital manager and senior researcher was that the much greater risk that a patient could be identified and linked to a particular health condition meant that patients should be made aware of and be asked for permission for this data to be used in audits. In this case, there was little public health benefit seen to outweigh the risks of individual infringement. ‘…in rare circumstances, rare infectious diseases or any other condition which is not as usual that’s where we sometimes tell the patient that expect this and this and this but in routine cases like malaria or URTI, it’s just routine.’ (Kilifi manager KLFM 11)