Health professionals, academics, politicians and privacy specialists have all come out in opposition to "sinister" government legislation which threatens to wreck the basic premise of doctor/patient confidentiality.
Legislation currently passing through the House of Lords gives the Secretary of State for Health extraordinary powers to "disclose and process" confidential patient information. This means the government (all arms of it) is entitled to know and use all your medical records as it sees fit.
We covered this issue at the end of January but now it is going through the Lords and the serious lobbying has begun. We are also trying to work out what happened to the Bill between January and now because the offending clause used to be clause 59 but the same clause is now number 67.
Anyway, we paid a visit to the House of Lords to hear a number of experts express their concerns and attempt to persuade the Lords of their case. It took place in the grand Moses Room - beautifully decorated but with a nasty breeze. Baroness Gould chaired the meeting, along with representatives of the Patients Association, ACHEW, POPAN and FIPR (see bottom for acronym translation).
A lot was said - most of it noteworthy - but you will tire if we run it all here. The basic point is that the government is giving itself wide-ranging powers over the patient/doctor confidentiality agreement. Its argument is that without this legislation if won't be able to effectively run cancer registries.
Trust me, I'm a Politician
But, in what has become a very disturbing facet of many examples of new legislation (we're thinking mostly RIP and the Terrorist Act here), the government has written itself quite unnecessarily wide powers over large groups of people.
Again, it says we should trust the legislators and it would never (or be allowed) to abuse its position, but the question, again, is: why then give yourself the power to do so?
This wide-net philosophy has not gone unnoticed, but is the first time the health care professionals have come face-to-face with it. They simply can't understand why the government would want these new powers.
LSE fellow and privacy advocate Simon Davies ventured that the government may be trying to pull economic interests into the previous public interests arguments. With computing power and databases these days the data from millions of people's medical records is worth a fortune.
But apart from this, the assembled panel could not see what the point of the clause is - prompting a Lord and two representatives to call it "sinister". There is also much anger than no one was consulted before the clause suddenly appeared in the Bill. The British Medical Association, the General Medical Council, the Royal College of paediatricians and others have all come out against the clause.
"Frankly bizarre" Vanessa Bourne of the Patients Association called it. The spokeswoman for ACHEW (sorry, we didn't catch your name) was good value. "I was thinking 'perhaps I've got it wrong, perhaps I'm a nutter' but now I know that I'm not. The only change we want to this clause is for it to be taken out. It is entirely obnoxious from start to finish."
What has all this got to do with technology, you ask? Good question. The fact is that technology is directly behind all this legislation. The government has started becoming aware of computer technology - in particular Internet technology - and what it can do.
We believe it has got it all hopelessly muddled; it is unlikely to agree. The fact is that though Whitehall, not to mention the secret services, can see huge time and cost savings in storing all the information on UK citizens on computers. It just hasn't recognised our rights to privacy at the same time.
The government is working on protocols so it can link all its departments' databases together. The ensuing network is either a wonderful use of technology or a terrifying portent of real Big Brother. We don't have a problem with it AS LONG AS there are strong safeguards in place. Currently, there aren't.
In a very telling part of the clause as well, the Bill says that the government will use anonymising software for patient records (so an individual can't be recognised but data can still be used for research) "having regard to the cost and the technology available".
Not unreasonably, a security software consultant said that any such technology would need to be developed and the government ought to be working with people to develop it rather than not implement any because none is already there. Unless of course anyone has decided to produce a huge, record-anonymising piece of software that fits in with the Health Department's computers just for kicks.
There's loads more to say, but we'll end it here with a good quote from FIPR lawyer Nicholas Bohm. "Now I know my medical records probably aren't very secure stuck in the filing cabinet of my doctor's office, but there is a huge difference between that and having it on a government database." Once the data is out there, it's very hard to get rid of. ®
ACHEW - Association of Community Health Councils of England and Wales
POPAN - Prevention of Professional Abuse Network
FIPR - Foundation for Information Policy Research (ole Caspar Bowden's organisation)