UK NHS data watchdog warning on privacy

The new chairman of the UK's National Information Governance Board for Health and Social Care, Harry Cayton, has warned that a new scheme to allow 50 million National Health Service patient records to be made available to agents for clinical research firms in order to target potential study participants directly is "ethically unacceptable."

Mr Cayton, who was previously the chief executive of the Council for Health Regulatory Excellence, told The Guardian newspaper that "there is pressure from researchers and from the Prime Minister to beef up UK research." He added that it would be a "backward step" for creating a mechanism which allows medical records to be accessed by firms directly in order to be invited to join a drug trial, without the patient giving consent for his or her records to be circulated. Under current privacy guidelines, researchers must ask a general practitioner to identify patients who might be suitable for enrollment in a clinical trial. It is then up to the GP to contact potential enrollees directly, without allowing the firm or research center conducting the tests to know the identity of the patient.

One alternative proposed by Mr Cayton would allow patient data to be accessed by researchers provided names and addresses are hidden. In April this year, the UK government considered a proposal to make data from 700 million prescriptions per year accessible to researchers within and outside the NHS (Marketletter April 7).