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Government Plans to Upload Medical Records to Database without Patient Consent

Posted by IanWhickham on Monday, 04 December 2006 12:31:18

The Government plans to ride roughshod over the concerns of patients, their GPs, and spokesmen for the BMA and GMC by uploading private medical data to the planned centralized database of records, the NHS Spine, without consent from patients.

Last month it seemed that "implicit consent" was the key phrase, with patients having to opt out of their own accord (without being told beforehand what is going to happen to their data). Now it seems even that will be denied us. Sir Liam Donaldson, Chief Medical Officer, directed GPs to forward any opt-out letters they may receive from patients wishing to have the 93C3 refusal of consent read code put on their records to Patricia Hewitt (Guardian). It is suggested on the Connecting for Health website that these patients will then have their requests refused (Sunday Telegraph).

As currently described I would certainly wish to withdraw from this project and have my records stored locally at my GP's surgery.

The events of these last two days have illustrated clearly that this Government has no concern for the sanctity of private medical data (if that wasn't apparent enough already). Goodness knows what they are going to come up with to do with everyone's details once they are on the Spine.

A centralized database is a good idea in principle, I agree with that. But it has to be acknowledged by the organisation(s) responsible for setting it up and maintaining it that there are inherent security problems with a database on that scale, and individuals' concerns regarding their records' confidentiality have to be respected.

There are three conditions I feel should have to be met before I will be willing to allow my records to be stored on such a system:

1. Consent for uploading should be explicit, not "implicit" - "implicit consent", especially with this sort of bullying regarding dissent, is no consent at all.

2. Sealed Envelopes should be implemented and stored locally at the GPs surgery as now (either on computer or on paper, or both), not on the Spine. The Patient should have the final say on what potentially sensitive information about them is uploaded.

3. There should be very strict regulations on access to the data from non-clinicians, enshrined in Law, that allow for strong punishments for persons caught (through whatever audit trail or similar is set up) accessing records illegally. These may include insurers, journalists, and even police and social services who have not gone through proper channels.

To find out more about opting out of the NHS Database, visit 'The Big Opt Out' website. If you do not agree with having your records put on a national database, for the reasons described above or others, print out the form-letter (follow the [b]Opt-Out Letter[/b] link).
The more people do this, the more strength GPs and the BMA have to resist the Government's proposal.

Ian

Spine, Privacy, NO2ID, Civil Liberties, NHS, Confidentiality, Database State, NPfIT

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Posted by coiaorguk on Monday, 04 December 2006 14:46:01

Totally agree Ian. The governments argument is simple, 'essential information' from health records should be available in emergency online 24/7 365 days.

Essential information is :-

* Personal Information Profile
* Personal Emergency Contacts
* Physician Contacts
* Specific Conditions and Allergy Information
* Medication & Dosages
* Device Information
* Medical record Summary
* Other Critical Instructions, such as advance directives, blood transfusion, organ donor information, and more.

This type of government database if it succeeds means that employers, police (DNA) and anyone granted authorisation will have access to your information.

To counter this I intend to contruct an online application so that members of the public can submit and maintain their own details online. Request for access are by email to the member. The site will be password protected and the database will be encrypted. A small membership fee will cover running costs.

When the site 'goes live' members of the public will have a solid argument against the government's proposal.

I would appreciate your comments on this suggestion - if you think it's 'dead in the water' please let me know.

Posted by Tizzy on Monday, 04 December 2006 19:25:33

Does anybody know if non-NHS medicos will have access or be abe to update this dbase? Will it include dental records?
What if you have treatment abroad? I know my records are incomplete on my GP's system.

Any dbase is only as good as the info put on and I'm concerned that medical decisions are to be made based on incomplete or erroneous records, let alone the deliberate/malicious tampering that could occur.

I'm not sure of a sister dbase, as proposed by coiaorguk. I must have missed the point about it being a solid argument against the NHS one - I'm not arguing, just don't understand.

Posted by coiaorguk on Monday, 04 December 2006 22:36:29

The idea is to provide a membership system that the general public can use to put their own critical health details online. These details would hope to meet government requirements of 24/7 365 day availability of critical health information as outlined in my last post. Obviously such a system should contain very accurate information, be secure, remind members when updates are required and easy to use.

If a system was in place and enjoyed public support then a valid argument could be put to the government that this scheme is much better and more acceptable than putting everyones entire medical history in an NHS database that is linked or will migrate into the government 'information system'.

Kinder power to the people (or am I going completely mad) Please comment?

Posted by DaveGould on Tuesday, 05 December 2006 00:15:19

Centralised government databases are to be avoided at almost any cost. People need to understand that once your data is on a database, it's no longer in your control. ANYTHING can happen to it.

You'd think we'd learned from the mistakes of the Germans. The first ever centralised database on citizens was used to catch and genocide Jews. As Eichman testified during his Nuremburg trial: 'the fate of those killed in the Holocaust was sealed by their answers to the 1939 census on religious background recorded on paper for a Hollerith machine, an early mechanical computer. Quite literally, their cards were marked.' -- http://www.timesonline.co.uk/article/0,,6-2144204,00.html

This is why the Government pretended they'd keep medical records off the ID database. I say pretended because the law still allows it. In fact, given the endless database surveillance measures they put forwards (ID, DNA, Children's Index, ANPR, satellite tracking of cars, ISP data retention, RIPA) one might think it's all a plan to create the world's most intrusive database on citizens.

Especially as we're all being numbered. You see, their ID Cards Benefits Overview describes in detail how our new identity numbers can also be put on the police databases (including DNA database):
http://www.identitycards.gov.uk/downloads/2005-06-27_Identity_Cards_Scheme_Benefits_Overview.pdf

The same will probably happen for the medical database, ISP records, phone records, credit card records etc.

Central indices (and numbering) all citizens will be the main tool of the 21st century dictator.

Posted by DaveGould on Tuesday, 05 December 2006 00:17:21

Centralised government databases are to be avoided at almost any cost. People need to understand that once your data is on a database, it's no longer in your control. ANYTHING can happen to it.

You'd think we'd learned from the mistakes of the Germans. The first ever centralised database on citizens was used to catch and genocide Jews. As Eichman testified during his Nuremburg trial: 'the fate of those killed in the Holocaust was sealed by their answers to the 1939 census on religious background recorded on paper for a Hollerith machine, an early mechanical computer. Quite literally, their cards were marked.' -- http://www.timesonline.co.uk/article/0,,6-2144204,00.html

This is why the Government pretended they'd keep medical records off the ID database. I say pretended because the law still allows it. In fact, given the endless database surveillance measures they put forwards (ID, DNA, Children's Index, ANPR, satellite tracking of cars, ISP data retention, RIPA) one might think it's all a plan to create the world's most intrusive database on citizens.

Especially as we're all being numbered. You see, their ID Cards Benefits Overview describes in detail how our new identity numbers can also be put on the police databases (including DNA database):
http://www.identitycards.gov.uk/downloads/2005-06-27_Identity_Cards_Scheme_Benefits_Overview.pdf

The same will probably happen for the medical database, ISP records, phone records, credit card records etc.

Central indices (and numbering) all citizens will be the main tool of the 21st century dictator.

Posted by IanWhickham on Tuesday, 05 December 2006 00:39:24

coiaorguk, have you had a chance to discuss the 'membership database' proposal with health professionals and/or the organisations that represent them (e.g. the BMA)? In particular, the medics and ex-BMA officers involved in the setting up of the Opt Out campaign may have some input and advice for you.

As I see it, there are potential benefits to doctors in emergency situations in having such a system in place, but whether these few cases (which today are dealt with by people carrying MedicAlert bracelets or similar) are worth the expense and practical difficulty in moving to a database-centred system is a subject for informed debate by health professionals (not politicians) - before the issue of then establishing Patient consent even arises.


Posted by kozmicstu on Tuesday, 05 December 2006 01:17:12

I couldn't believe it when we moved ares while my girlfriend was pregnant and there was absolutely no system in place whereby the doctors in our new town could get information from the doctors where we lived before. This lack of organisation in the health service is ridiculous and something ought be done about it. It seems that keeping health records on a database makes a lot of sense from this perspective. All a doctor would need is your name and NHS card and he could see previous issues, treatments, prescriptions... It could single-handedly quarter the paperwork that doctors go through.

Unless, of course, you'd rather medicine be an endless paper-trail and doctors become ineffective while searching in vain for the correct information...

Stu

Posted by Tizzy on Tuesday, 05 December 2006 03:45:40

Sorry, coiaorguk, still don't understand why the public would buy into your dbase other than to make a statement that they want to be in control of what gets seen by medics or others.

Some 'for instance' problems: people who are illiterate, or have profound mental disabilities, or just don't want anybody knowing they have addictions, STD's or are HIV+.

I agree that no matter what safeguards are offered a lot of people will be very twitchy with the NHS dbase. If there has to be one I would prefer the data to come from GP's etc rather than the patient.



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