Health check: Shared NHS records mean better medical research

The test of the system will be whether it maintains confidentiality, as promised

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We are accustomed to the idea that what goes on between doctor and patient in the consulting room must remain confidential. It is a fundamental principle of good medical care. What is less widely accepted is that, in order to provide good, timely care, information must be shared, albeit while confidentiality is still respected. It is an important way of spotting what is going wrong – and right – in the NHS.

This week, leaflets are being distributed to every household across the country explaining why NHS records are being shared. The records will not carry names and addresses, and will be held securely, but they will be identifiable from details such as the postcode and NHS number. As Dame Fiona Caldicott said in her review of the scheme, published last April, there is “a duty to share information which can be as important as the duty to protect confidentiality”.

An example cited is that of bowel cancer, where survival rates vary widely. Doctors believe the disparity is linked to the tortuous pathways followed by some patients as they try to access specialist care. Sharing information on their diagnostic and treatment history could help identify shortcomings in the NHS.

The test of the system will be whether it maintains confidentiality, as promised. There have been a number of reports of unauthorised access to records, and 700,000 people who opted out of the forerunner of the present scheme, which involved sharing summary records, have been told they will not have to opt out again.

Civil liberties campaigners object that people should be asked to opt in rather than opt out – a move that would strangle the scheme at birth. There are also complaints that anonymised data will be sold on to pharmaceutical manufacturers and private health companies for profit.

Rather than forgoing them, the NHS should share in those profits. If the data fetches a fair price and helps sustain a comprehensive health service free at the point of use into the future it is to be welcomed, not condemned. The NHS has one of the finest data banks in the world – it should use it, for the benefit of the health service and, more importantly, its users.

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