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Harringay, Haringey - So Good they Spelt it Twice!

NHS Summary Care Records - Know Your Rights to opt out

From DEFEND HARINGEY HEALTH SERVICES 11/3/2010

A lot of people have received details this week about plans to increase access to their personal medical records. There is concern amongst health professionals (including the BMA) that this is being rushed and people are not being fully informed of their rights to 'opt out' or how to do it. Here's some useful information...

FIGHT FOR HEALTH RECORDS HEATS UP
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.

The British Medical Association and GPs' leaders are 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 - and 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.

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).

NO2ID and our colleagues at the NHS Confidentiality Campaign are trying to make exercising your right to opt out simple and straightforward -
--
The NHS Confidentiality Campaign website is here

BMA says 'suspend roll-out'
The British Medical Association has written to the government calling for the roll-out of the Summary Care Record to be suspended. In a letter to health minister Mike O'Brien, the doctors' union claims the roll-out of the SCR has been accelerated before sufficient independent evaluation of the pilot areas has taken place.

letter errors fuel SCR roll-out row
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.

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I received a letter which was straight forward and easy to navigate. It says that only NHS Healthcare professionals will have access to my medical records which is already the case.

My choices were clear - I could download a form from a website or order one by calling a helpline. I presume this has been set up like this as they would prefer people to take up the scheme. You can also register your wish not to have a care record with your GP.
I agree - I thought it was easy to understand and Googling "NHS summary care record" took me straight to the page with the opt out form.
Are you opting out and why would one do so? Help!
No - I'm in. I think the sharing of my medical information between health care workers can only be to my benefit. Can understand why some would prefer to opt out though.
(Reposted with links mended)

Thanks to Peter who's fast becoming HoL's Healthcare correspondent. A personal thanks too. The little fan of leaflets had been staring at me for the past few days. After a quick scan, I put them in the read again a bit more carefully pile in my mind and hadn't got back to them. So this is a helpful prompt. Nothing like the whiff of scandal to galvanise us.

My understanding of the concerns is that:

1. There is danger of data confidentiality being compromised in light of:
a. the patchy performance of government in the UK to guarantee it.
b. what should be considered as the indelible nature of electronic data storage.

2. The measure is being rushed in before the General Election resulting in a failure to take sufficient care to ensure that everyone understands what is being done, its implications and how to opt out.

I imagine that for some people this issue will cause concern; others will be happy for the new record to be created, but the majority will feel that whilst they'd rather not have a record created, they can see that it might be useful and won't be unduly bothered so will just move on.

If you'd like to browse some more sources of information to make your decision, here are a couple more links I found on a lightening speed search:

The Daily Telegraph, March 11

Opting out of the NHS Database website run by a campaigning medical...
The Register, April 2009
computing.co.uk, 10 March

If your mind's already made up and you just want out, here's the NHS page to opt out.
The BMA has been generally supportive of the scheme but have concerns regarding implementation:

http://www.bma.org.uk/images/scrguidance_tcm41-195486.pdf

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