More health information means better care, right? NHS England has set up a programme to build a complete picture of what’s happening across all health networks. (you can read details on the care.data website).
While the intention is great, the approach is questionable. Dr. Mohammad Al-Ubaydli, CEO of PKB, asks
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?
The reality is that
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”.
In short, this means that if you knew the date and place of a famous footballer’s foot injury, there would only be a few records that showed such an event. Once you have this information, the pseudonym provides the rest of their notes – not so anonymous now. We know this is not a theoretical risk because a Harvard University researcher demonstrated last year that she was able to retrieve 35 patients’ records at $50 per patient from Washington State’s research database.
It is worth reading the paper in the last link, it was not included in the Guardian’s final article.
PKB eliminates this situation. No one at PKB can access let alone sell patients’ data because of our patient-controlled encryption.
The full article (and many comments) are posted on the Guardian here.