The government's care.data scheme - due to start in March 2014 - aims to collect data from the confidential medical records of every man, woman and child in England and sell it - for a price - to a rag-tag bunch of middle managers, pharmaceutical labs and rapacious insurance companies who, we are assured, have nothing but our best interests at heart.
The anonymity claim is equally ridiculous: just ask anyone who's ever taken a Computing for Dummies class at their local library. This is what David Davis MP had to say about it:
The leaflet promotes the government's 'care.data' scheme. I'm concerned that the leaflet makes a number of misleading claims.
1. "Details that could identify you will be removed before your information is made available to others, such as those planning NHS services and approved researchers... We sometimes release confidential information to approved researchers..."
2. "Information that we publish will never identify a particular person..."
3. The Information Commissoner's Office have stated:
"However, in some circumstances it can be difficult to establish the risk of re-identification, particularly where complex statistical methods might be used to match various pieces of anonymised data. This can be a particular vulnerability where pseudonymised data sets are concerned, because even though pseudonymised data does not
identify an individual... the possibility of linking several anonymised datasets to the same individual can be a precursor to identification..."
4. David Davis MP is quoted in The Guardian:
"I have had my nose broken five times. Once you know that, I am probably in a group of 100 people in England. Then you figure out when I had my diptheria jab, usually done at birth, and bang you got me. Let me be clear: people can be identified from this data..."
5. I challenge whether claims 1 & 2 are misleading because
(i) The data can apparently be used to uniquely identity patients by cross-referencing it with other data sets, such as those containing details provided to insurance companies by customers when purchasing a policy
(ii) Section 5 of the Health Service (Control of Patient Information) Regulations 2002, authorised by Section 251, allows the release of identifiable information from the HSCIC data for non-research purposes
(iii) The claims make no mention of non-research organisations who can apply to access the data, such as insurance companies
(iv) The claims make no mention of the police who can access the data under Secton 29(3) of the Data Protection Act 1988
6. "We will only use the minimum information needed to improve patient care and services..."
7. I challenge whether this claim is misleading, because the existing Clinice Practice Research Datalink (CPRD) scheme is already able to "maximise the way anonymised NHS clinical data can be linked to enable many types of observational research and deliver research outputs that are beneficial to improving and safeguarding public health" using much less information than the "minimum information" collected by the care.data scheme.
8. ""If you are not happy for your information to be shared you do not need to do anything... And you can change your mind at any time..."
9. HSCIC's response to a recent Freedom of Information request states:
"The HSCIC will not anonymise data retrospectively where an objection is registered
with a GP practice following an extraction of data... Where patients have registered an objection to the disclosure of their personal confidential data from GP practices, this will be respected in all but exceptional circumstances..."
10. Therefore, I challenge whether the claim that patients "can change [their] mind at any time" is misleading, since HSCIC themselves have confirmed that this is not the case.
11. "This leaflet contains important information about your health records... You have a choice..."
12. In 2005, a comparable scheme took place in Hampshire. Affected patients were contacted by unaddressed leaflets. In 2007, the Parliamentary Health Select Committee heard:
"We have learnt from what Hampshire did, because we believe that it did not go to every person who needed to learn about it, and I have learnt more about the junk mail rule than I ever want to know, but it exists and you need to send to every addressed adult in order for it not to get thrown away..."
13. I challenge whether the claim "You have a choice" is misleading, since many patients (especially those not living alone) will not have seen the leaflet.
14. I can confirm that I am not employed by anyone in the medical (or related) industries, nor have I ever been a member of a political party, nor have I ever been a member of any charity or other campaign group which lobbies on medical issues.