This tool is no longer active. This page remains here should NHS England make as much of a mess of care.data in 2017 as they did in 2014. If you think it may have been relevant to you, please email coordinator@medconfidential.org
While brave GPs are being bullied into handing over your family’s medical records, we’re hearing from a growing stream of people that their GP practice hasn’t even known what to do when they asked or went in to opt out of care.data.
We’ve been sent scans and photos of Summary Care Record opt out forms that people have been given, forms for opting out of local data sharing arrangements, and who knows what. We can point individual patients who contact us at the right form, but that doesn’t help everyone else in the practice.
If you have gone to your GP practice and they haven’t clearly understood and acted upon your request to opt out of care.data, you can let us know which practice it was through our new tool:
http://formFix.medConfidential.org
Just enter your postcode, tell us which surgery, and we’ll send them some details.
The formFix site is not for you to opt out online, but it lets us know where the confusion is and helps us to help GPs avoid breaching the Data Protection Act because of the impossible position NHS England has put them in.
NHS England has no way of knowing this information, so blithely continues assuring people that everything is fine. This should provide some data on how badly their communications campaign is actually going on the ground, for the next time Tim Kelsey joins us on the radio.
It would really help if you told friends and family who live in different parts of England about this. N.B. care.data does not affect Scotland, Wales or Northern Ireland. Send them the link, blog it, Tweet it, post it on Facebook.
Spread the word.
thank you for the information that you are providing. I have had concerns about this for some years now and it is reassuring to see that someone is doing something about it.
I also have concerns about medical data when shared by DWP and other similar bodies to determine people’s eligibility for claiming various benefits. That they too have access to people’s medical records because I have experienced this a a very negative way. DWP guidance on this is not clear.
I have concerns that people working in the personal injury compensation and insurance sectors also have access to medical data on people who are injured, that Law Society guidance on this issue is not clear on who has access to what, how much of it and why. This needs addressing quickly if not already being addressed.
I suspect that local government social services departments also have some access to people’s medical data and records due to the type of work that they do. However, there seems to be little guidance available on this and again this also needs addressing quickly if not already happening.
Finally, please note that I did try and download the various opt out form but for some reason there are problems with this. Either relating to your website or Adobe Reader. Just thought I should bring it to your attention.
thank you once again.
regards
Thanks for posting your concerns. Sorry you had difficulty getting the PDF – we are serving out a LOT of these at present, so you may just have been unlucky on timing.
Please do try again – direct link: http://medconfidential.org/wp-content/uploads/2014/01/caredata_trifold.pdf
I sent the opt out form last week along with repeat prescription and I know they must of got it because today I have letter back regarding my prescription but what really worries me now is on the back of that it say this, HSCIC – NHS England wish to extract patient data, NHS number, postcode, gender in order to plan services in the area. If you do not wish your details to be accessed please write to the practice manager. I thought the opt out form covered this too.
Would it be possible to send us a scan of the letter with your own details blacked out? This sounds odd.
We know that some practices are attempting to notify patients about care.data by adding text such as you describe to repeat prescription forms, but if this isn’t something like that I would urge you to contact your practice manager directly and ask to check that the opt out codes have been added to your record as per your instructions.
Thanks so much for this. I went into my GP Surgery to ask about opting out, and they told me to write my address on a piece of paper and they’d sort it out once they had a system! This is really useful, both for me and to hopefully stop them giving the wrong advice to other people.
My GP has sent me a letter saying that they will not be sending ANY information about me, identifiable or anonymous. I wasn’t aware they could do this as I did not think the opt out stopped all information from being sent. I think my GP may have got it wrong.
The 9Nu0 opt out (the GP one) now prevents any data from being uploaded to HSCIC under the care.data extraction.
We understand that anonymous (i.e. aggregate) information can leave the practice, e.g. a total count of the number of patients who have opted out – not anything about them, just the total number.
Hello,
I was wondering, do I need/would it be worthwhile to opt out of previous GPs? Will they still have my records on file from my time there?
Thank you for your help.
Under the care.data scheme, information will be extracted from records held by the GP practice with which you are currently registered. So records held by your previous GPs shouldn’t be affected. But the scheme is ‘up in the air’ right now, so I suggest you write to or call HSCIC direct and ask them for confirmation:
enquiries@hscic.gov.uk or 0845 300 6016
Please do let us know how you get on.
My GP practice refused to accept your opt out form and insisted on me completing their own form. This includes an opt out from “Personal Clinical Information on the Summary care Record”. I am not sure whether I should opt out from this, as I can not see how a SCR can exist without my clinical information attached.
Hello, having read this info in still a little unsure as to how it will affect me. I have previous medical records that I don’t want visible to others, can these be removed from my gp’s file? Thanks
Hi,
If you don’t want information from your medical records to be uploaded to HSCIC for ‘secondary uses’ where it can be sold or passed on to others, then you can still opt out – care.data uploads are on hold for the present, and no information has been uploaded as yet. Information from your records may be shared with others for your direct medical care – that is a different issue. You have a right to have factual errors in your GP record corrected, but not to have records deleted or removed. If you have concerns about this, you can speak to your GP directly or get in touch with the TBOO patient advice line.