NHS ‘misleads patients’ over sharing medical records with drug firms

Christopher Williams writes in the Daily Telegraph:

A new NHS computer system that will share the medical history of millions of patients with drug companies without proper consent is under attack from privacy experts, who say it is misleading, risky and potentially illegal.

The system, the Secondary Uses Service (SUS), is part of the NHS’s troubled National Programme for IT, and massively expands the amount of medical data that commercial and academic researchers can access.

In many cases, patients will not be asked for consent for their data to be shared, because it will be “anonymised”, a process which deletes certain information with the aim of making individuals unidentifiable.

However, in a letter to the British Medical Journal, Dr Ian Brown of the Oxford Internet Institute said that NHS rules mean such unwitting participants in research can be “trivially” re-identified. They are also not to be told or given a choice about how their medical records will be used, he said, and misled about the risks to their privacy.

The BMJ letter is available here.