Patients Need To Have Control Over Their Own Information If Care.data Is To Work

The consent process for opting out of care.data should be clear and transparent, and patients should be the first to have access

The case the government makes for care.data, that allowing medical researchers access to patient data will result in new cures, is a hard one to oppose. If the case were so simple then most people, including me, would welcome it.

The question that the care.data effort brings to light is a simple one – why has the NHS moved so quickly to provide patient medical records to third parties and so slowly to provide data to the patient themselves? For me, this is entirely the wrong way round.

The consent process for opting out of care.data is neither clear nor transparent. The questions page states that the record will not contain information that can identify a patient – and it's true that NHS number, postcode, full name etc will be removed. However, it's also true that each patient's record will be linked to a "meaningless pseudonym that bears no relationship to their 'real world' identity".