19 Mar 2010

Opt out of health records

I have several times expressed concern about our health records - see a year ago here my concerns - well the Department of Health is trying to roll out Summary Care Records to millions of patients before the general election. Those who have received mail shots now have less than 12 weeks to act, if they want to preserve their medical confidentiality.

Cartoon from Russ

The NHS Confidentiality campaign which was set up to protect patient confidentiality and to provide a focus for patient-led opposition the government’s NHS Care Records System has continued to campaign on this issue with the effective campaign group NO2ID. However it is not just them - the British Medical Association and GPs' leaders are also deeply concerned and have told the government to stop letters being sent out to patients across England until they include an opt out form.

Patients are being misinformed - not least about who will have access to their records. The leaflet 'Changes to your health records' states that "anyone who has access to your records... must be directly involved in caring for you". THIS IS UNTRUE: the Department's own documents show that government officials and many others will have access "in the public
interest", "by statute" (remember Clause 152!) or by court order.

Not surprisingly independent evaluators have noted that in the pilot areas 7 out of 10 patients weren't even aware that a Summary Care Record had been created for them.

Here is what NO2ID cards people write: "The Department is deliberately trying to make opt out difficult. Not only isn't the opt out form included in the information pack, you are supposed to phone a call centre for one, trawl the NHS website for a download (no direct link is given) or ask your doctor (who may have no forms, or know little about the process)."

I opted out a while ago download details and an updated leaflet which explains what is going on and provides an opt out letter for people to use here: www.no2id.net/downloads/SCR_optout_sheet.pdf

You do not need to opt out again. If you have opted out already and haven't moved to a different practice, you should be fine. If for any reason your practice asks you to use the 'official' form, simply ask them to provide one - or to respect your clearly stated wishes in the form you have given, which provides all the same information. More than likely, your doctor is on your side.

I see here that local medical committees have reported that their attempts to include opt-out forms in information sent to patients has been blocked. Meanwhile, a glitch at a mailing house used by NHS Connecting for Health has led to patients receiving information packs addressed to other patients! All this not good news and just adds to concerns. I mean where on earth are we heading - Birmingham Airport has just introduced new face recognition gates (currently optional) which can be used by adults with a biometric passport from the UK or EU.

The government now expects to have issued 17 million ID cards by 2017 - what a tragic waste of money. Indeed I now see that the UK ranked has been 6 in global list of repressive regimes! A report from the US internet security company Cryptohippie puts the UK at number six in the list of the world's most repressive regimes in terms of the electronic surveillance of its citizens. The report 'The Electronic Police State, 2010 National Rankings' says: "The UK is aggressively building the world of 1984 in the name of stopping 'anti-social' activities. Their populace seems unable or unwilling to restrain the government". The report defines an electronic police state as being characterised by "State use of electronic technologies to record, organize, search and distribute forensic evidence against its citizens".

OK this is a ranking in terms of surveillance - and I find it more than disturbing that our Government should want to spend such vast sums of money watching us all.

1 comment:

Philip Booth said...


The British Medical Journal (BMJ) Blogs website carries an article
expressing concern about the NHS Summary Care Record (SCR - see
Newsletter 141 & 144). In the piece Stephen Ginn, a psychiatrist in
training, says: "As with other large database projects -- of which this
country now has legion - the advantages of sharing information must be
balanced with the possible pitfalls. The SCR's benefits are most
obvious for forgetful people who have a serious medical condition or
allergy and are visiting friends out of town. This is a relatively
small number of people and for the rest of us the benefits appear to be
marginal. The rollout of the SCR raises serious questions around the
issues of privacy, legality, effectiveness, and cost". If you live in
London or one of the four other strategic health authorities currently
receiving information in the post about the rollout of the SCR system
then below are links to the opt-out forms that you can use to preserve
your medical confidentiality.