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New leaked data fiasco

By Victoria Macdonald

Updated on 10 January 2008

Patients with serious illnesses such as cancer are having their personal details passed to medical researchers.

Cancer registries use confidential patient data in research to combat disease but it includes names, addresses and other personal information held on case notes.

The drawbacks of this data-sharing are highlighted by the case of a junior doctor with a rare disease.

She received upsetting and intrusive phone calls about her illness from researchers. When she complained, she was suspended by her employer and even now is bound by a gagging order from publishing her case. She's been legally gagged by a hospital trust and she's not able to be identified because of a court order.

Yet the reason why she was in court in the first place has enormous implications for the safety of patient confidentiality and data and reveals what happens to doctors when they dare to speak out and they in effect whistleblow.


The drawbacks of this data-sharing are highlighted by the case of a junior doctor with a rare disease.

For five years the doctor in question fought a libel action behind closed doors in the HIgh Court against Cambridgeshire Primary Care Trust, the East of England Strategic Health Authority and the National Clinical Assessment Authority. Now she has won and the judge agreed her honour had been impugned and an apology had to be read in open court.

So how has she managed to antagonise these authorities?

First of all she was both a doctor and a patient, a woman who when young suffered a rare and serious life-threatening condition. This made her of interest to researchers.

According to the High Court statement her private medical details, in fully identifiable form, were disseminated widely for the purposes of research and passed to her employers despite her withholding consent.

She contacted Addenbrooke's hospital, where the researchers were based, to complain about the unobtrusive phone calls. She also asked for her details to be removed.

They and the East Anglian cancer registry refused repeatedly until ordered by the court. The latter alleged that the claimant's statement was not true, because it was 'not possible' that her details could be held there.

In fact, it was true. All her private medical details were there. They were forced to apologise. Although it took them five years.

It is also clear from the court documents, that the claimant and her colleagues were expected to do research using fully identifiable patient medical records and data. When she raised her concerns to her employers she was placed on special leave and suspended.

She was forced to spend the next three years fighting the libel action allegations made against her. It would appear because some people did not like her questioning of how data was held.

Why did the PCT and Addenbrooke's react so strongly to her asking for her private medical details to be removed from the register? Neither would comment.

The PCT said that under the terms of the agreement neither party could speak publicly about the dispute to any extent or in any format whatsoever.

In 2004 the High Court ordered this doctor's medical details to be deleted. Addenbrooke's had to pay her costs. But she was not given her job back.

The health authority and trust say they appreciate that the concept of medical confidentiality is paramount. They also say they should never have placed her on special leave, that they should never have pursued her through the courts knowing she had no funds to pay for her own lawyers.

This all comes amid increasing concern over the safety and confidentiality of personal data, as the government prepares the new national computer system to contain all patient notes.

Yet already patients are regularly put on registries, not just for cancer but for many diseases and their details - names, addresses, age, treatments - all fully identifiable - are passed to researchers.

This should be done with full consent but cancer charities say this is not always clear.

Those in charge of the cancer registries are adamant the information cannot be anonymised and that it is vital for the future treatment of a disease that affects one in four people in the UK.

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