Row erupts over patient database

HEALTH bosses in Essex have denied trying to make it hard for people to withdraw from a controversial national patient database after it emerged patients would not be sent opt-out forms.

Roddy Ashworth

HEALTH bosses in Essex have denied trying to make it hard for people to withdraw from a controversial national patient database after it emerged patients would not be sent opt-out forms.

Summary care records will contain all key medical information about patients on a massive electronic database accessible by both GPs and hospital staff.

The programme is due to be rolled out across north Essex in the New Year, with 270,000 letters being sent to all registered adults explaining why the system is being implemented.


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However, the EADT has learned that primary care trust NHS North East Essex will not be including the opt-out form in the pack.

One GP, who did not want to be named, said he felt the trust was not including the form because it believed it would make it “too easy” for patients to withdraw from the scheme.

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Concerns about the system have also been raised by civil liberties groups such as NO2ID which is opposed to the “database state”.

But last night the trust denied the accusation, claiming the opt-out form was not being included to avoid the expense of posting it.

If patients do not signal their opposition, a profile is automatically created for them and will include information about medication, registration details, allergies, adverse reactions.

The NHS has said the new system has already benefited doctors elsewhere through “reliable, relevant, up-to-date information” in time-critical situations.

But Dr Grant Ingrams, chairman of the British Medical Association's IT committee, said the project's credibility would be damaged if people felt they were being “coerced”.

He said: “Electronic summary care records have the potential to improve both quality and safety of patient care but it is critical for the programme's success that all patients receive balanced information and are made aware of their option to opt out.

“If patients feel they are being coerced, or have a summary care record created without their knowledge or understanding, it will damage the credibility of the project.

“Evidence from the early adopters suggests that the information campaigns to inform patients about the summary care record had been ineffectual.”

“We must learn from this experience and ensure that PCTs in the east of England provide appropriate readily accessible information to all patients so they can make an informed choice.”

The system has already been implemented in south Essex and elsewhere in the country where the opt-out rate has been less than 1%.

June Francis, summary care record project manager at NHS North East Essex, said: “The information pack which will be posted out to 270,000 residents across north east Essex in January explains fully what is involved in having a summary care record (SCR).

“It also explains very carefully what people have to do if they wish to opt out of having a SCR, namely to contact their GP or NHS North East Essex.

“There is also information on how to obtain information in different formats such as other languages, Braille and easy-read. They have a minimum of 12 weeks in which to make this decision so there is no rush.

“The main reason we have not included an opt-out form in the pack is the fact that the current national opt out rate is just 0.67 per cent. It is difficult to justify the cost of printing and the extra postage of a form when such a very small number of people are deciding to opt out.

“It should also be pointed out that people can change their mind and opt out - or opt back in - at any point, so there is no substance whatsoever to the suggestion that we are trying to make it difficult for people to opt out of having a SCR.”

james.hore@eadt.co.uk

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