UK Liberty

A heartwarming story about medical data protection

Posted in accountability, control freakery, database state, privacy by ukliberty on January 16, 2008

E-Health Insider:

A female junior doctor suspended by her employers for five years after objecting to her private medical records being given to researchers, has won a High Court battle forcing her employees to apologise to her in an open court session.

The case highlights problems in the lack of patient consent in determining whether their records can be used for research purposes, such as data held in regional cancer registries.

Not just lack of consent, but what happens when you explicitly withhold consent – it seems they just ignore that.

The doctor, who cannot be named for legal reasons, was born with a serious and life-threatening disease, a fact which she disclosed to her employers in her application form.

According to a Channel 4 news report on the High Court statement her private medical details, in fully identifiable form, were disseminated for the purposes of research, despite her explicitly withholding consent.

After being entered onto the East Anglian cancer registry, her details, including personal contact information, were released to researchers at Addenbrooke’s Hospital in Cambridge, who repeatedly attempted to contact her by phone to participate in research.

She contacted Addenbrooke’s hospital, where the researchers were based, to complain about the obtrusive phone calls. She also asked for her details to be removed from the cancer registry.

Channel 4 News reported the researchers and the East Anglian cancer registry repeatedly refused to remove her details until ordered by the court. East Anglia cancer registry had 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.

Around the same time, her employers referred her to an occupational health consultant, who criticised her stance towards research registries, resulting on her being placed on special leave from her employment.

In 2004, the High Court ruled that the details should be deleted, which Addenbrooke’s did, paying all legal fees.

However, as her employers Huntingdonshire PCT – now Cambridgeshire PCT, did not restart her employment, she sued them for libel

– without a lawyer, apparently because she couldn’t afford one –

claiming her integrity had been damaged.

Towards the end of December 2007, the case came to an end, with the judge agreeing with her, ordering Cambridge PCT, the East of England SHA and the National Clinical Assessment Authority to read an apology to the open court.

Read by their barrister, Damian Brown, the apology said: “The PCT and the SHA apologise unreservedly for the distress that has been caused to the employee in relation to these matters and the resulting affront to her professional integrity.

“The PCT further apologises that as a result of these matters, the employee has been on special leave for some four and a half years. Any future employers of the employee should not regard this as in any way a stain on the employee’s character or professionalism.”

Brown added: “The PCT and the SHA appreciate that the concept of medical confidentiality is paramount if patients are to have trust in the medical profession, in hospitals and in doctors. They appreciate that the employee has had a long and distressing battle to preserve her medical privacy.”

As part of the High Court ruling none of the three bodies were able to comment on the case to E-Health Insider.

In a statement after the case, the woman said: “After six years of medical training and several years working long hours as a junior doctor and dedicating myself to the health service, medicine was my life. Being excluded from work for five years has curtailed my promising career and has caused absolute devastation to both my professional and personal life and to my family.”

So who is responsible for her distress and do they face disciplinary action?  What of the ‘third party’ who ‘misled’ the authorities?  What changes will result from this case?  Will people be ignored when they withhold consent and then repeatedly express that they do not give consent?  Why on earth does a ‘stance toward research registries’ result in being placed on ‘special leave’ (ie suspension?) or concern about fitness to practice?

What a disgrace.  It should be enough to say, “I withhold my consent”.


One Response

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  1. Dr Rohini Shetty said, on February 5, 2008 at 11:30 am

    I work in India having gained postgraduate medical qualifications in the UK. People say India is a Backward county in yerms of medical issues, but I found when working in UK confidentiality of medical records was very lax. Even in india we keep very private patient notes eg leprosy etc. if such information about patient got out then patients would never come to us again and disease would never be irradiacated.we never dosc;ose names to researchers. I think the UK can learn from us.

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