UK Keratoconus Self-Help and Support Association

Dear all,

You may or may not be aware of the government's current plan to upload all NHS patients' records onto a national database controlled by a centralised server, rather than local ones. Currently the scheme is being piloted in several areas all over the UK. Questions are being raised about the security and speed of such a large, centralised database which could put patients at risk of identity fraud, lost records and indeed the slowness and unreliability of such a large system when it needs to be accessed quickly.

No patients have been asked to consent to having their data put onto a national database. Currently it is ONLY possible to opt out by writing to your GP BEFORE the records are uploaded.

You may wish to read the two links below so that you feel more fully informed about the proposals and can then decide whether to accept the government's decision or opt out. There is an opt-out template letter (see the second link below): all you have to do is to fill out your name, address and name and address of your GP,then print out the letter to send it to your doctor. Your GP, under NHS and GMC guidelines, has a duty to document the request in your notes as well as enter the opt-out code 93C3 "Refused consent to upload records to national shared electronic record", otherwise he/she breaches regulations.

Your life, your records, your confidentiality.


http://www.nhsconfidentiality.org/?page_id=3

http://www.nhsconfidentiality.org/optoutletter

Lizzy

This is the classical ethical dilemma. the thinking goes that by having a central server with all our records available to every treatment centre, no doctor will ever have to fly blind with a patient. I can walk into moorfields and the ophthalmologist can look at my notes and see that I have had grafts, look at the surgeon's notes and be well informed about my history when assessing my current needs.

On the other hand there is the serious risk to my confidentiality; the danger of mistakes being perpetuated and of my notes being 'misused' for commercial gain.

On balance I think it more likely that I personally would gain from the possibilities presented by centrally held records, although I think I'd gain more from patient held records. You are right to say that this is a matter for the patient; we have to be aware of what is happening and be prepared to exercise our rights in regard to our records.

By the way, I think that this whole programme violates the principle of 'informed consent'. The lack of a patient's formal objection to records being handled in this way can not, under any circumstances, be considered equivalent to the presence of the patient's informed consent to their records being used thus.

Andrew

Andrew,

I agree that the principle of informed consent has been violated. I have opted out for this reason.
I like to think that I'd benefit from a centralised system, since I have multiple chronic conditions, but cannot put faith in a massive electronic system. It is likely to be complex, slow and not fully reliable. Ultimately it may be quicker to hunt out the paper records.
I will continue to wear my medical talisman with the relevant information.
I agree that patient held records would be preferable.