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

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