RogerBW's Blog

Have you opted out of yet? 20 January 2014

(Readers not in England, if any, please ignore.)

Have you even heard of

You should in theory be getting a leaflet through your letterbox soon. Maybe it'll arrive in time. Maybe it won't arrive at all. This concerns the latest data mining effort by the NHS.

The plan is that large parts of all medical records will be uploaded into a new database run by the Health and Social Care Information Centre, in which they will be used for administrative and statistical purposes, and from which they will be released to anyone who cares to pay, perhaps in an anonymised form, perhaps not. (They won't be available to GPs, hospitals, or anyone else who might actually be involved in the medical care of individuals.)

All this is great, if:

  • The HSCIC, and the rest of the NHS that will have access to this system, and the third parties that will be able to buy copies of the data, never suffer an information leak from this high-value target.

  • The Secretary of State does not ever decide that patient confidentality needs to be overridden (no vote or justification needed).

  • There's nothing in your medical records that you don't want known (there is no formal definition of the "sensitive" data that are being left out, and it's subject to later change.

  • You trust not only the HSCIC but all future governments and potential owners of this information.

  • The anonymisation is done, and anonymisation of personal records works to prevent identification of individuals. Ross Anderson thinks it doesn't. Bruce Schneier thinks it doesn't either.

  • You don't care if the world and his dog know everything about you that your GP knows.

  • You will never change your mind about any of these things.

If you're happy with all that, great! Stop reading now.

If you wouldn't like this to happen, it's up to you to act. Your GP is required by the Health and Social Care Act 2012 to provide the data when required. The only way this can be prevented is by you getting your GP to put a flag on your records (and those of any children for whom you're responsible).

There's a leaflet here with a summary of the situation and a suitable form to be handed to your GP.

Please note that this is nothing to do with the Summary Care Record (out of which you may have opted in 2009). In spite of a ministerial promise to respect existing opt-outs, this will not happen.

If you ever change your mind and want your data irrevocably loaded onto this system, no problem! That can be done at any time.

If you'd like more information, Neil Bhatia has put up a reasonably comprehensive web site about the project and just what can and will be done with data once they get into this system.

Comments on this post are now closed. If you have particular grounds for adding a late comment, comment on a more recent post quoting the URL of this one.

Tags 1920s 1930s 1940s 1950s 1960s 1970s 1980s 1990s 2000s 2010s 3d printing action advent of code aeronautics aikakirja anecdote animation anime army astronomy audio audio tech aviation base commerce battletech beer boardgaming book of the week bookmonth chain of command children chris chronicle church of no redeeming virtues cold war comedy computing contemporary cornish smuggler cosmic encounter coup covid-19 crime crystal cthulhu eternal cycling dead of winter doctor who documentary drama driving drone ecchi economics en garde espionage essen 2015 essen 2016 essen 2017 essen 2018 essen 2019 essen 2022 essen 2023 existential risk falklands war fandom fanfic fantasy feminism film firefly first world war flash point flight simulation food garmin drive gazebo genesys geocaching geodata gin gkp gurps gurps 101 gus harpoon historical history horror hugo 2014 hugo 2015 hugo 2016 hugo 2017 hugo 2018 hugo 2019 hugo 2020 hugo 2021 hugo 2022 hugo 2023 hugo 2024 hugo-nebula reread in brief avoid instrumented life javascript julian simpson julie enfield kickstarter kotlin learn to play leaving earth linux liquor lovecraftiana lua mecha men with beards mpd museum music mystery naval noir non-fiction one for the brow opera parody paul temple perl perl weekly challenge photography podcast politics postscript powers prediction privacy project woolsack pyracantha python quantum rail raku ranting raspberry pi reading reading boardgames social real life restaurant reviews romance rpg a day rpgs ruby rust scala science fiction scythe second world war security shipwreck simutrans smartphone south atlantic war squaddies stationery steampunk stuarts suburbia superheroes suspense television the resistance the weekly challenge thirsty meeples thriller tin soldier torg toys trailers travel type 26 type 31 type 45 vietnam war war wargaming weather wives and sweethearts writing about writing x-wing young adult
Special All book reviews, All film reviews
Produced by aikakirja v0.1