NHS database? No one asked me!
Reader doesn't want no steenking database
Letters Last week's story on the latest fiasco to hit the troubled NHS National Programme for IT (NPfIT) prompted this letter from a concerned reader:
I have been away from The Register for some time but happened across it tonight and was reading some of the articles therein about the NHS IT database and couldn't help noticing that they were all about its cost and delays. There was no mention of what Joe Public thinks about it being created.
I, probably like most of the Public, was totally unaware that any such database was being created until a few months ago when I stumbled across an article somewhere on the internet. I was horrifed to discover that here was the government creating a database of everyones patient records, records which up until now I had thought were privy only to my doctor and a few others at local level. In fact, as far as I'm aware at this time the law says that nobody is allowed access to those records without a Court Order or my express permission so I was very very angry to discover all this going on behind my back. I wrote to Patricia Hewitt's office and demanded an explanation and got by return a snooty letter saying how everyone would benefit from having access to their medical notes countrywide and how I should be grateful the database is being formed.
I had asked some fundamental questions. Given that one visits a GP or other physician in confidence one expecs any notes made of treatment or any discussion to be held in the utmost confidence - there are people out there for Pete's sake with a history of horrendous abuse, of drug addiction, of incestuous relationships, embarressing illnesses and psychiatric problems who expect and demand that all that is known is kept secret. Peoples lives could be ruined if such stuff became public. I asked who had given permission for other people, people who might know me even, to access this private data to input it into the NHS database and pointed out that once this data was on the database anyone could find an excuse to read it - medical staff training students, doctors looking up similar cases, not just someone treating a patient. Then I pointed out that , given its record with divulging data for profit, there was a good case that this data would be sold on to recoup some of the costs! ! of forming the database - pharmaceutical companies, insurance companies, the Police, and lets not forget other branches of government even down to a local Council who might make a case to access medical records for someone applying for a grant for a disabled access. It absolutely stinks of yet more government control and I insisted my details are not added only to be told NO!. No you can't be excluded - we'll do what we like say her department and then afterwards we'll ask for permission and maybe limit the information IF we want to. Well I'll be, not only do we have our records accessed illegally but it contravenes our Human Rights and walks over the most private part of our life left to us. Nothing is left. What next , cameras in our bedrooms to ensure we're not up to anything illegal? There is already a camera in my road and I live in the country. The effect will be that people will stop being honest to doctors and will tell them nothing. What a country we live in,
Let's hear the other side of this debacle, how the Public is not being ASKED if it WANTS this database - what do you think the average person would say if they knew the implications of some nasty neighbour who worked in the NHS getting to look at their records or some hacker publishing their records on the Net? How cheated do you think a rape victim will feel if everybody gets to know because someone accidentally, or deliberately makes the information public? How long will it be before we all start getting refused insurance with no explanation and then find our insurance companies have read our medical history? How is such damaging knowledge ever taken back? It can nevr be taken back, damage will be permannet. People demand privacy on such matters.
Come on The Register, you're a public face to the world, isn't it about time you told people the downside of all this? A ngative story about IT is still a story and this affects us all.
Please feel free if you want to publish my letter but don't publish my name - I have little privacy now as it is. I may not be able to respond to any emails as I will very shortly be an ex-e7even user!!
Thanks for great news items