River Wissey Lovell Fuller


January 2008

Our new monthly letter from the Doctor; this month he expresses his concerns about the proposed medical database.

Please read this article carefully. It is accepted by the BMA, General Nursing Council and other medical organisations that it is necessary to develop an electronic form of patient records. Increasing patient mobility and the fragmentation of "out of hours" care have made this necessary. There has to be a better way than having your medical records locked up in Feltwell while you have your heart attack in Bradford.

Most medical professionals would prefer a patient-held smart card containing the medical records but the government think you would lose your card and, with their terrible record for developing new computer systems, are trying to build a £20 billion computer (the largest non-military IT project in the world) which will hold centrally more sensitive and detailed medical information about patients than is held by any other country in the world. This information is to be uploaded without your explicit consent (they are assuming "implied" consent) and you have no way of checking its accuracy.

NHS Central Database:

Many of you will remember that, over the past couple of years, I have expressed concern about the plans to put all patient medical records on a central database, with the associated problems concerning accuracy of information and, most importantly, confidentiality. My idea that, for the first year of the system, confidentiality could be checked by only including the medical details of politicians, civil servants and their families, after which, if the system is watertight, mere mortals such as us would allow our details to be included, has not been adopted by those in authority. The new system is in trouble. One of the main suppliers has pulled out, it is billions of pounds over the original £6 billion budget and it is three years behind schedule. Senior health officials have described it as "under-funded and over-ambitious. The firms behind the technology are not keeping up with the scale and complexity of the national program".

It gets worse! I am grateful to Feltwell's Vicki Enderby, a practice nurse in Brandon, for alerting me to the following. On November 1st 2006, health ministers vowed to press ahead with "uploading" millions of medical records onto the new central database, even if people objected to their personal details being included. The uploading will commence in two "early adopter" areas of England in Spring 2007, starting with allergies and recent medication prescribed by the GP. Eventually, your full medical record will be uploaded. The Department of Health said "We will go ahead on the basis of implied consent. Patients will have the data uploaded - they do not have the right to say the information cannot be held. People can then choose to opt out of the system but the medical record cannot then be removed from the database - You simply cannot disappear the information from the system" (grammar!). "What you can do is decline to share it with anybody without your consent" An online "flag" or a "sealed envelope" will be added to the records but this computer technology has not yet been developed and there is no date for its release.. However, NHS staff will be allowed to break open the "sealed envelope" under some circumstances. Police will be able to obtain data in the interests of national security and government agencies can get access if "the interests of the general public are thought to be of greater importance than patient confidentiality". At present, police have to persuade a GP to divulge limited facts, often with a court order. Under the new system, data may be disclosed centrally at the touch of a button.

The government does not appear to have addressed the issue of information misuse. Laws change and so do governments. An extreme example - Before the War, the government of the Netherlands collated the religious denomination of every citizen to allow the correct last rites to be delivered. Harmless and commendable until the Nazis got hold of the database and used it for a very different purpose!

So, who can view the data? The health department has issued 250,000 smart cards (I have one) and varying levels of information will be available to doctors, nurses, receptionists, healthcare managers, social workers, private medical firms, ambulance staff and commercial researchers. If we remember the schoolboy who hacked into the Pentagon computer, the above could give us cause for concern. The National Audit Office wrote recently in a report warning of significant concerns among NHS staff "Patient confidentiality remains a controversial issue among critics, both as regards the adequacy of planned safeguards to protect information, and whether patients should have the right to opt out of having their information recorded". Officials insisted that the above text be deleted and replaced with the more innocuous "that the confidentiality of patient information may be at risk".

At present, there is no system to allow patients to check the accuracy of the information held about them. One practice manager, who managed to look at the information held within the hospital system, discovered that, because of a coding error 20 years previously, she had been falsely listed as receiving treatment for alcoholism. When she insisted that her records should be deleted, she was told that she could no longer receive NHS treatment.

What can we do? The Chief Medical Officer (Government Official) has just written to every GP practice, asking how many patients have asked to opt out of the new system. Because there has been no publicity and patients are, on the whole, unaware of these plans, the answer will probably be "none". The government will interpret this information as meaning that nobody objects and will upload all the information without explicit patient consent. There will follow an intensive publicity campaign telling you what a brilliant idea it is and warning of the dire dangers to your future health if you refuse to allow your information to be shared with others. If you disagree with this, you could write to The Secretary of State for Health, Richmond House, 79, Whitehall Terrace, London SW1A 2NS, with a copy to your GP. "Dear Sir/Madam, I require you not to begin processing my sensitive personal data to the proposed NHS Summary Case Record on the Spine. It is likely to cause me substantial unwarranted distress because no "sealed envelopes" yet exist to limit access, no online patient system yet exists to correct errors, data uploaded may contain genetic, psychological or sexual information and my consent will not be asked before processing. I understand that data will be made available to social workers, researchers and commercial firms and adequate criminal penalties against abuse do not yet exist. Police and other agencies will be able to gain access to my information and there is already abundant evidence that computer databases, such as police, vehicle licensing and banking computers, are routinely penetrated by private investigators on behalf of clients, including media organisations. The department threatens to withhold appropriate medical care to objectors and doctors say there is no necessity to design the spine in this way. I fear that I am in danger of having false or damaging health information fall into the wrong hands and that my privacy is being unnecessarily violated. Yours faithfully," I should warn you that the Chief Medical Officer (Government Official), in a standard letter to those patients who have already asked to opt out of the system, has said that he is "unable to agree" to their request. He said patients would have to prove they would suffer "unwarranted distress for personal reasons". If you believe that your medical record is a matter of confidence between you and your GP and that there are better ways of creating an electronic patient record, why not write a letter anyway and keep our MP (Christopher Fraser, House of Commons, London) in the loop. If you type Who is my MP? into Google, you will be able to send him a free Email and read all about him.

I am sorry that this article has been so indigestible but I felt it was important to raise awareness of the issue. To cheer us up, a few jokes might be in order. I had to run these past Head Office before publishing them; my marriage is important to me and I should hate to cause offence. Happily, management was as amused as I had been when I first saw the jokes, so here goes:

My wife and I were happy for 20 years. Then, we met. My wife dresses to kill - she cooks the same way.

A good wife always forgives her husband when she is wrong. I was married by a judge- I should have had a jury.

Never go to bed without settling a quarrel - stay up and fight. The secret of a happy marriage remains a secret.

After a quarrel, a wife said to her husband "You know, I was a fool when I married you" He replied, "Yes dear, but I was in love and didn't notice" Man is incomplete until he is married - then, he is finished.

I haven't spoken to my wife in 18 months - I don't like to interrupt her. The most effective way to remember your wife's birthday is to forget it once! If it weren't for marriage, men would go through life thinking they had no faults. We always hold hands - if I let go, she shops. 80% of men cheat in America. The rest cheat in Europe.

In fairness, we'll have some husband jokes next month. I'll let Head Office choose them.

Best wishes to you all.

Dr Ian G. Nisbet

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