[Nottingham] “Anonymized” data really isn’t — and here’s why not

TJ Tall_long_thing at hotmail.com
Sat Jan 25 11:45:17 UTC 2014


I'm not sure if the nhs website has been updated recently but it does
state "this is information about individual patients but it does not
include any identifiers (that is, there are no personal details such
as your date of birth and postcode included)." Further down the
website states "Your date of birth, postcode, NHS number, and gender
(but not your name or full address) will be used to link your records
in a secure environment at the Health and Social Care Information
Centre but will then be removed (see question 3 in the full list of
Patient FAQs)."

Tom Saxton-howes
On 21/01/2014 19:10, Martin wrote:
> On 21/01/14 12:03, Jason Irwin wrote:
>> On 19/01/14 21:28, Martin wrote:
>>> My personal selection from surfing around the web is:
>> Hit mainstream media now as well: 
>> http://www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy
> Oooooooer...
> There
> is also:
> EU proposals could outlaw giant NHS database 
> http://www.telegraph.co.uk/health/healthnews/10585305/EU-proposals-could-outlaw-giant-NHS-database.html
>  "... Under the scheme, patients’ data will be automatically
> uploaded into the care.data system unless an individual chooses to
> opt out.
> Board papers drawn up by Department of Health (DoH) officials warn 
> that proposed EU regulations to harmonise rules on data protection 
> would not allow such a system - because they state that
> individuals must give explicit consent, knowing the specific
> purpose for which data is being used. ..."
>> People may also find this useful: 
>> http://www.cl.cam.ac.uk/~rja14/Papers/caredata_trifold.pdf
>> One thing worries me about that PDF though. It states: "I am 
>> writing to give notice that I refuse consent for my identifiable
>>  information"
>> The NHS will claim that their data does not make you
>> identifiable and, but of course it it does when matched against a
>> pre-existing dataset. The wording gives them far too much wiggle
>> room. I think the PDF should say: "I am writing to give notice
>> that I refuse consent for any information relating to me to be
>> used for any purpose other than providing direct medical care."
>> I actually have no issue with a researcher getting my data to
>> pull out statistical information, so maybe add an exception in
>> for that as well.
> For myself, I've little concern for genuinely *aggregated* data
> being collected provided that there is very clear aggregation such
> that no personal identification is included to begin with, and that
> the number of samples are great enough to *make re-identification
> impossible* .
> My own personal concern is that nowhere have I found any clear 
> statement that a person's medical record will not be personally 
> identified... (There is lot's of vagueness proffered, but nothing
> that I can read as a clear statement to say that we will be
> protected from commercial or other's abuse of medical records.)
> So in summary:
> The NHS leaflet can be found on:
> Better Information Means Better Care (pdf) 
> http://www.england.nhs.uk/wp-content/uploads/2014/01/cd-leaflet-01-14.pdf
>  Alternatively, there is this version (non-NHS produced): 
> http://www.cl.cam.ac.uk/~rja14/Papers/caredata_trifold.pdf
> My understanding is:
> You are opted in by 'default', regardless of whether you know
> about the scheme or not. Once your medical records are released,
> there is no 'getting them back'.
> If you wish to opt out, the key opt-outs to give to your GP
> practice are:
> 'Dissent from secondary use of GP patient identifiable data' code 
> (Read v2 [system]: 9Nu0 or CVT3 [system]: XaZ89) to be added to
> your record so that your identifiable data is not collected from
> your GP IT system;
> 'Dissent from disclosure of personal confidential data by Health
> and Social Care Information Centre' code (Read v2: 9Nu4 or CTV3:
> XaaVL) to be added to your record so that HSCIC are not to release
> any (identifiable?) data they already might have collected about
> you.
> Note that those two 'codes' are nothing to do with such as your 
> Summary Care Record (hopefully only used and accessed only for
> primary care). Nor for something else called SUS that records your
> visits to other parts of healthcare such as visits to hospital. Do
> HSCIC get "Personal Confidential Data" from SUS?...
> Also, *for the "9Nu0" code* is that last character a zero or a
> letter "O"? What happens if miss-entered? What feedback do you get
> that your personal data really is NOT being collected?
> - From The Guardian article:
> http://www.theguardian.com/society/2014/jan/19/nhs-patient-data-available-companies-buy
>  "Rather than prevent this, the care.data scheme is deliberately 
> designed so that 'pseudonymised' data – information that can be 
> re-identified by anyone who already holds information about you –
> can be passed on to 'customers' of the information centre, with no 
> independent scrutiny and without even notifying patients. It's a 
> disaster just waiting to happen."
> Note/disclaimer for this public maillist: Completely no
> recommendation from me. Merely my personal opinion/thoughts. You
> all have your own choice.
> Cheers, Martin
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