BPSU - Research using health records

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BPSU studies collect information about rare conditions. It is important not to miss counting, or collecting information about, any children with the condition as every single child is important.

The NHS uses medical records for audit or research to improve future health and care. Hospitals and health professionals make a note when someone does not want their health records to be used for audit or research (known as dissent).

If a patient (or legal guardian) wishes to dissent from research, their data would not be used in BPSU studies

BPSU studies use, with appropriate ethical approvals, data from patient records but do not involve any direct contact by researchers with individual patients; individual patient consent is not sought.

The General Medical Council principles of Good Medical Practice, in particular that all doctors should take prompt action to prevent the compromising of patient safety, dignity or comfort, are observed in research using the BPSU surveillance system.

BPSU studies go through very thorough checks before they start and these ensure that confidentiality is protected at all stages.