Roll Up, Roll Up, NHS Medical Records for Sale
January 20, 2014 9:19 AM Subscribe
Shortly (over next few months), almost all NHS medical records in England will be uploaded to a central database, and available for purchase by companies from around the world.
If it hasn't already arrived, a leaflet should be landing on the doorsteps of most English households informing people that their medical records, their most intimate data, is being uploaded to a central database, a database to which organisations, charities, universities and private companies (from anywhere in the world) can buy access.
http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx and http://www.england.nhs.uk/ourwork/tsd/care-data/ ... are some of the official sources of information.
But the leaflet doesn't make it clear exactly how to opt-out. And the leaflet was only sent when the Information Commissioners Office insisted that such a leaflet was sent.
So why is the process happening in the first place, and why isn't it opt-in rather than opt-out?
The official line appears to be that this will "help improve care". That organisations accessing the data will produce amazing findings that will revolutionise the NHS.
Yet few examples are given as to how it will improve care, few meaningful trials appear to have happened - and why should some private company who has spent thousands of pounds of its own money carrying out the research then freely publish the findings (there appears to be no contractual requirement for them to do so)?
Given that when the data is transmitted from your GP (your local doctor for non-UK residents) to the HSCIC (the central database) ALL data is sent unencrypted - quite possibly by post - (including name, address, etc) there's clearly a massive security hole.
Given that once "pseudonymised" (more on this below), your gender, age, and full postcode (zipcode) is stored with your medical data, and that some data purchasers can see this level of data, and that some postcodes can identify unique houses (in extreme cases, e.g. in the countryside), this data doesn't seem either safe or anonymous.
Official blurb re: the "pseudonymous" data:
http://www.hscic.gov.uk/media/12864/caredata-addendum---Addendum-document/pdf/care.data_addendum_-_addendum_document_-_September_2013_%28NIC-178106-MLSWX.A0913%29.pdf: “potentially identifiable data” in pseudonymous form (i.e., data that could
be considered identifiable if published but are considered non-identifying
when released into a controlled environment)
Although contractually purchasers are not supposed to use the data to uniquely identify individuals, given that many of the purchasers (such as BUPA, a private health provider and insurance provider) already hold data which they can cross-correlate, and that the fines for purchasers will no doubt be relatively trivial, (and no doubt some purchasers on the other side of the world will be hard to fine) this whole process seems reckless bordering on the criminally incompetent.
There are alternative views to the official line:
http://medconfidential.org/ provide information, including a very handy letter/form to hand to your GP to opt-out. Opting out at this stage seems like a very sensible idea.
http://care-data.info/ provides whole ton of other information.
There are views from the technical people involved in the whole process: http://www.hsj.co.uk/comment/more-patient-data-ultimately-means-better-care/5066865.article#.Ut1UIl1FCk0.
There's information explaining how much it will cost to access the data: http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf.
Given the current UK Governments long-standing hatred of the NHS (NHS will not exist under Tories, Jeremy Hunt, current Health Minister, called for NHS to be de-nationalised), and Mkinsey's continued involvement in the NHS), it's very hard not to be suspicious that this isn't a determined attempt to "level the playing field" for private providers.
If I were you, I'd opt-out ...
If it hasn't already arrived, a leaflet should be landing on the doorsteps of most English households informing people that their medical records, their most intimate data, is being uploaded to a central database, a database to which organisations, charities, universities and private companies (from anywhere in the world) can buy access.
http://www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Pages/care-data.aspx and http://www.england.nhs.uk/ourwork/tsd/care-data/ ... are some of the official sources of information.
But the leaflet doesn't make it clear exactly how to opt-out. And the leaflet was only sent when the Information Commissioners Office insisted that such a leaflet was sent.
So why is the process happening in the first place, and why isn't it opt-in rather than opt-out?
The official line appears to be that this will "help improve care". That organisations accessing the data will produce amazing findings that will revolutionise the NHS.
Yet few examples are given as to how it will improve care, few meaningful trials appear to have happened - and why should some private company who has spent thousands of pounds of its own money carrying out the research then freely publish the findings (there appears to be no contractual requirement for them to do so)?
Given that when the data is transmitted from your GP (your local doctor for non-UK residents) to the HSCIC (the central database) ALL data is sent unencrypted - quite possibly by post - (including name, address, etc) there's clearly a massive security hole.
Given that once "pseudonymised" (more on this below), your gender, age, and full postcode (zipcode) is stored with your medical data, and that some data purchasers can see this level of data, and that some postcodes can identify unique houses (in extreme cases, e.g. in the countryside), this data doesn't seem either safe or anonymous.
Official blurb re: the "pseudonymous" data:
http://www.hscic.gov.uk/media/12864/caredata-addendum---Addendum-document/pdf/care.data_addendum_-_addendum_document_-_September_2013_%28NIC-178106-MLSWX.A0913%29.pdf: “potentially identifiable data” in pseudonymous form (i.e., data that could
be considered identifiable if published but are considered non-identifying
when released into a controlled environment)
Although contractually purchasers are not supposed to use the data to uniquely identify individuals, given that many of the purchasers (such as BUPA, a private health provider and insurance provider) already hold data which they can cross-correlate, and that the fines for purchasers will no doubt be relatively trivial, (and no doubt some purchasers on the other side of the world will be hard to fine) this whole process seems reckless bordering on the criminally incompetent.
There are alternative views to the official line:
http://medconfidential.org/ provide information, including a very handy letter/form to hand to your GP to opt-out. Opting out at this stage seems like a very sensible idea.
http://care-data.info/ provides whole ton of other information.
There are views from the technical people involved in the whole process: http://www.hsj.co.uk/comment/more-patient-data-ultimately-means-better-care/5066865.article#.Ut1UIl1FCk0.
There's information explaining how much it will cost to access the data: http://www.hscic.gov.uk/media/12443/data-linkage-service-charges-2013-2014-updated/pdf/dles_service_charges__2013_14_V10_050913.pdf.
Given the current UK Governments long-standing hatred of the NHS (NHS will not exist under Tories, Jeremy Hunt, current Health Minister, called for NHS to be de-nationalised), and Mkinsey's continued involvement in the NHS), it's very hard not to be suspicious that this isn't a determined attempt to "level the playing field" for private providers.
If I were you, I'd opt-out ...
This post was deleted for the following reason: Heya, not that this might not be worth a post of some sort, but this reads a lot less like a Metafilter post and more like an editorial and call to action which isn't really appropriate for the front page. -- cortex
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