DEATH Posted January 16, 2014 Share Posted January 16, 2014 I got a leaflet through the letterbox about this today, probably will be a topic of discussion in the coming weeks, you can opt out. http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx A doctor has setup this website about it: http://www.care-data.info You need to contact your GP if you don't want all your medical info to be "shared", data extractions will start in March 2014. Link to comment Share on other sites More sharing options...
DTMark Posted January 16, 2014 Share Posted January 16, 2014 I filled in the form to opt out of the "Summary Care Record". Looks as though quite a few people opted out of that, this has a slightly different name. I'll write to my GP to ask them to process the opt out and confirm. Link to comment Share on other sites More sharing options...
erat_forte Posted January 16, 2014 Share Posted January 16, 2014 If you leave England and live elsewhere does the English NHS retain your records? Who do you write to to opt out if you are not registered with an English GP? Link to comment Share on other sites More sharing options...
Bossybabe Posted January 16, 2014 Share Posted January 16, 2014 If you leave England and live elsewhere does the English NHS retain your records? Who do you write to to opt out if you are not registered with an English GP? If you're outside the ambit of the NHS, I guess the last GP practice you went to would archive your records. Link to comment Share on other sites More sharing options...
frankief Posted January 30, 2014 Share Posted January 30, 2014 Yes, got a leaflet through my letter box today - more insignificant junk mail to chuck away? Better read it first - especially the bit about sharing information 'with approved researchers and organisations outside the NHS'. Not sure who is 'approved' - will they let us know at the time? Link to comment Share on other sites More sharing options...
generation jones Posted January 30, 2014 Share Posted January 30, 2014 The leaflet is very vague altogether. I read this and think I will opt out - when I get round to it. http://medconfidential.org/how-to-opt-out/ Link to comment Share on other sites More sharing options...
chronyx Posted January 30, 2014 Share Posted January 30, 2014 The leaflet is very vague altogether. I read this and think I will opt out - when I get round to it. http://medconfidential.org/how-to-opt-out/ Thanks for the link Link to comment Share on other sites More sharing options...
bendy Posted January 31, 2014 Share Posted January 31, 2014 Yes, got a leaflet through my letter box today - more insignificant junk mail to chuck away? Better read it first - especially the bit about sharing information 'with approved researchers and organisations outside the NHS'. Not sure who is 'approved' - will they let us know at the time? Apologies for reading the antichrist, the BBC, but there was a very good rated top comment on what the ‘research’ organisations will be: Once the insurance companies get their hands on the data absolutely nobody will be paid out ever again. "Sorry old chap. You didn't declare the boil on your backside in 1983" Link to comment Share on other sites More sharing options...
little fish Posted January 31, 2014 Share Posted January 31, 2014 GP's could be fined if too many of their patients opt out. Well I think it's about time we were all just fined for staying alive, breathing, soaking up oxygen. you know - just fined. http://www.gponline.com/News/article/1229152/gps-face-fines-patients-opt-data-sharing/ Link to comment Share on other sites More sharing options...
chronyx Posted January 31, 2014 Share Posted January 31, 2014 Dropped my form in today Link to comment Share on other sites More sharing options...
Fed_Up Posted February 1, 2014 Share Posted February 1, 2014 Dropped my form in today I've opted out too. Or at least I hope I have. The wording on the form was really confusing though - not sure if it's because I was half asleep at the time! It seemed to be a locally made form and not a standardised one as I can't find a similar one online. "Do you not want to not opt out of sharing your data?" Yes [ ] No [ ] and then what appeared to be a very similar question underneath. I think I might go back and make certain. Link to comment Share on other sites More sharing options...
Bloo Loo Posted February 1, 2014 Share Posted February 1, 2014 GP's could be fined if too many of their patients opt out. Well I think it's about time we were all just fined for staying alive, breathing, soaking up oxygen. you know - just fined. http://www.gponline....t-data-sharing/ its called taxes...the other inevitability is death...and the taxman hates that to happen. Link to comment Share on other sites More sharing options...
Ologhai Jones Posted February 4, 2014 Share Posted February 4, 2014 I'm kind of surprised that people on here aren't making more of this. There was something about it on Radio 4's Today programme today (at around 08:10, so 2 hours 10 into the programme): My link. Link to comment Share on other sites More sharing options...
tinker Posted February 4, 2014 Share Posted February 4, 2014 Been to the doctor's today asked about opting out. Helpful receptionist gave me a form to fill in, had conversation about the issue it seems they are aware it's 'not right,' and due to how it's been promoted few will be aware of it. Came out with a handful of forms she'd photocopied for me to give out at a meeting tomorrow. Link to comment Share on other sites More sharing options...
Solitaire Posted February 4, 2014 Share Posted February 4, 2014 The leaflet is very vague altogether. I read this and think I will opt out - when I get round to it. http://medconfidential.org/how-to-opt-out/ Thanks for the link, will be dropping the form into my doc's tomorrow. Link to comment Share on other sites More sharing options...
chronyx Posted February 4, 2014 Share Posted February 4, 2014 Is there any way of confirming this has been done? Link to comment Share on other sites More sharing options...
JoeDavola Posted February 4, 2014 Share Posted February 4, 2014 I take it this is only happening in England at the moment, and not the rest of the UK? Link to comment Share on other sites More sharing options...
Ologhai Jones Posted February 6, 2014 Share Posted February 6, 2014 BBC website: Giant patient records database 'should be delayed'. A giant database, Care.data, is being set up with anonymised records to help aid medical research and the monitoring of performance...There is a proposal - to be discussed next month - which could give access to non-NHS bodies, including private firms... [Healthwatch England chair Anna Bradley] said: "Once again the NHS has decided it knows best and is ploughing ahead with plans to share this data whether we like it or not. "To make matters worse, the communications around this have been so poor that we are now in the situation where all of us are about to be automatically opted in to a scheme we know little or nothing about. "While we recognise that sharing the data could be of significant benefit to researchers, the NHS has a moral duty to consult with all of us and trust us to make our own decisions."... Tim Kelsey, NHS England's national director for patients and information, said patients need not have concerns as the information would not be "identifiable". "This data is stripped of all the identifiers so, for example, the name and address features nowhere on this data; postcode, numbers, the data is stripped of all the identifiers and in their place are substituted meaningless pseudonyms in order that this data can be linked with other data sets. "Can I be categorical? No one who uses this data will know who you are." Link to comment Share on other sites More sharing options...
tinker Posted February 6, 2014 Share Posted February 6, 2014 I opted out today. Simple form; tick a box. Seems those working at surgery doing the same. Meanwhile... Police and Govt Agencies To Have 'Backdoor' Access Link to comment Share on other sites More sharing options...
Ologhai Jones Posted February 11, 2014 Share Posted February 11, 2014 Liberty blog: Take Care. Link to comment Share on other sites More sharing options...
LC1 Posted February 11, 2014 Share Posted February 11, 2014 I take it this is only happening in England at the moment, and not the rest of the UK? Only NHS England at the moment, as far as I can tell. Link to comment Share on other sites More sharing options...
ChumpusRex Posted February 11, 2014 Share Posted February 11, 2014 This seems a very strange idea, which goes completely contrary to the data protection mantras drummed into NHS staff. As a researcher, data mining has been very difficult. You have to make an application to an ethics committee stating exactly what data you want, and exactly what analysis you want to do. Typically, they will not permit any personal or identifiable data to be used, and will also consider the possibility that "anonymised" data could be re-identified (e.g. rare diseases, details of date and place of treatment left in the data, etc.) I've had some contact with the national cancer registries. They keep records of every case of cancer diagnosed in the UK. But if you want to get research data from them, it is extremely challenging, and if they judge that there is any possibility of re-identification of the data, then your whole project will be vetoed. It should not be forgotten that medical data with name, address/postcode stripped off is still easily identifiable. Even medical data with Name, DOB, address, postcode, hospital number stripped off is still potentially identifiable. I have grave concerns about this system, and the intention to sell the data commercially. It is more difficult than many people think to render data truly anonymous. Link to comment Share on other sites More sharing options...
petetong Posted February 11, 2014 Share Posted February 11, 2014 I have grave concerns about this system, and the intention to sell the data commercially. It is more difficult than many people think to render data truly anonymous. They've probably been told by prospective customers to ensure that it is identifiable ... Link to comment Share on other sites More sharing options...
tinker Posted February 12, 2014 Share Posted February 12, 2014 This from the official HSCIC website, the price list for data services. Clearly states that confidential individual information can be purchased. Price List Link to comment Share on other sites More sharing options...
Ologhai Jones Posted February 18, 2014 Share Posted February 18, 2014 BBC website: Adults 'unaware of NHS data plans'. Fewer than a third of adults recall getting a leaflet about changes to the handling of medical records, a poll for BBC Radio 4's PM programme suggests. I'm one of the two-thirds: I don't recall seeing my leaflet yet. Link to comment Share on other sites More sharing options...
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