Revolt as 200,000 people demand to opt out of new NHS database scheme
By JAMES CHAPMAN
Last updated at 21:55pm on 31st December 2007http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=505419&in_page_id=1774
Intimate details of the first 100,000 patients have been uploaded to the controversial new NHS database despite a mounting revolt by doctors and campaign groups. Around 20 GP surgeries have added 110,000 individual records to the scheme, which will contain details on patients' medical history, current medication and allergies.
But the Daily Mail has learned more than 200,000 people have requested documents that allow them to demand their personal medical records are excluded from the system, which will "go live" in January.
There is growing concern about the security of the £12bn IT programme - the biggest civilian computer project in the world - which will ultimately contain the details of 50 million people. A poll showed that more than three-quarters of doctors are either "not confident" that data will be safe or "very worried" that it will leak once the system is up and running.
Some senior medics are now encouraging a campaign of disobedience against the database by supporting a campaign to urge patients to opt out. Activists in the British Medical Association (BMA) have produced a letter that people can send to their GP to stop their records going onto the database. The letter can be downloaded from the website of the Big Opt Out campaign, nhsconfidentiality.org. http://www.nhsconfidentiality.org/?page_id=9
Critics fear patient records could be misused if they can be accessed by NHS staff across the country. Campaigners also highlighted the Government's "appalling" record on data security, which saw the personal and banking details of 25 million child benefit claimants lost last year.
Nine NHS trusts were forced to admit losing hundreds of thousands of health records.
So far, more than 550,000 patients in Bolton, Bury, Dorset, south Birmingham and Bradford and Airedale have been asked to register with the new NHS IT scheme. It will be rolled out across the country later this year, once the pilot sites have been evaluated.
Patients were initially told they would have no choice over whether their information would be included on the database. But ministers were forced to offer concessions because of concerns over privacy and security.
Patients can now choose to opt out altogether - though they are warned this could compromise their NHS care. Alternatively, patients can choose only to allow access to NHS staff who have their explicit consent.
But NHS manager Helen Wilkinson, who is masterminding the opt out campaign, said patients were not being told of their rights. She launched her campaign in 2006 after discovering that she had been wrongly labelled an alcoholic after seeing a consultant about routine surgery. She has now forced the Health Department to wipe all of her records from NHS files. "My concern is that patients' records are being uploaded without their consent," she said.
"The Government says every patient should be getting a leaflet setting out their options. But the reality we are finding is that many are not.
"Even when they do, we are not satisfied that the literature is clear about the risks associated with this database.
"The Government has demonstrated only too clearly that it cannot be trusted with this sort of personal information.
"Its record on keeping data secure is frankly appalling."
Joyce Robins, of the campaign group Patient Concern, said: "Our main problem is that they are doing it on an opt-out basis - we think they should ask for consent before records go up."
Dr Paul Cundy, chairman of the BMA's general practitioners IT committee, who helped compose the protest letter, said: "Some doctors are actively encouraging their patients to rebel. "This letter is an easy way for patients to express the rights that the BMA feels they ought to have by default."
Ministers insist that the current NHS records system, which relies predominantly on paper files, can lead to unnecessary delays and risks.
Marlene Winfield, head of public engagement for the NHS IT programme, said: "Patients are always surprised that their records aren't already available in other parts of the NHS - they say we thought the NHS has been doing this for years. "Patients have to go through a security process before they can set up the record.
"The NHS has always had a confidentiality culture as patient information is regarded by everyone as sensitive - it's in everyone's training and contracts."
But a poll carried out by the Doctors.net.uk website showed that only a fifth of doctors believe the system will be secure. Another interesting site about what patients can do can be found at the below link. It includes a template letter you can send to Whitehall and your GP requesting your records are not added to the new NHS database: http://www.guardian.co.uk/society/2006/nov/01/health.medicineandhealth2