This would be straight up illegal in the US due to HIPAA, which guarantees a patient's right to privacy.
HIPAA = http://en.wikipedia.org/wiki/Health_Insurance_Portability_an...
HIPAA = http://en.wikipedia.org/wiki/Health_Insurance_Portability_an...
The price list looks so cheap that Russian or Nigerian scammers can afford these extracts and it would save them a hell of a lot of time setting up ID scams and instantly make them much more profitable.
No longer any need to mass mail in the hope of finding someone likely to buy V!agr4, the NHS will give you a list of likely marks to direct market to and save all the useless pitches to women !
>Latanya Sweeney, the director of Harvard University’s Data Privacy Lab, identified 35 patients from a Washington database by buying state medical data and creating a simple software program to cross-reference that information with news reports and other public records. “All I have to know is a little bit about a person and when they went to a hospital, and I can find their medical record in this kind of data,” Sweeney says. She says data in 25 other states are just as vulnerable.
The whole article is an interesting read. Apparently the data is sold pseudoanonymised in some states, leaving it up to the purchaser to truly anonymise the data.
[1]http://mobile.businessweek.com/articles/2013-08-08/your-medi...
The Harvard researcher probably fell under research for public health. I'd hope private researchers can access public health data. The goal for "ICD" global standardized diagnoses codes is to help research.
There are rules for distribution and compliance that should carry over to each handler of the data sets.
Given all that, I still have anxiety of bad actors handling the private information.
>Washington State’s health agency sold its database 95 times that year, collecting a mere $15,950. Donn Moyer, a spokesman for the state’s health department, says it chose to release extra identifying information such as patients’ Zip Codes to make its data more useful.
The Harvard researcher's point is that it's possible to identify individuals in the datasets being sold in some scenarios.
That is a blanket statement which is false. Some of what NHS is providing would be illegal in the U.S. Some of it is actually legal. I am mostly responding to the blanket statement.
> The data we supply is normally pseudonymised. We only provide identifiable data when there is a lawful basis to do so i.e. with patient consent, approval under section 251 of the NHS Act 2006 which enables The Health Service (Control of Patient Information) Regulations 2002, or where appropriate statutory regulation is in place.
This "About Section 251" page, http://webarchive.nationalarchives.gov.uk/20130513181011/htt... , states
> Section 251 came about because it was recognised that there were essential activities of the NHS, and important medical research, that required use of identifiable patient information but because patient consent had not been obtained to use people's personal and confidential information for these other purposes, there was no secure basis in law for these uses. [NB. There are a few exceptions where there is a legal basis for disclosure e.g. reporting of notifiable diseases]. Section 251 was established to provide a secure legal basis for disclosure of confidential patient information for medical purposes, where it was not possible to use anonymised information and where seeking consent was not practicable, having regard to the cost and technology available.
As they have your contact details and next of kin details then seeking consent must be quite practicable.
I expect them mean "commercially financially viable". Those people the NHS can't simply look up a phone number for (from doctor's surgery records) and ask (or ask their guardian/parent) must be in the few hundreds [of those they have sufficient medical information for to be used in a scientific study].
To look at one random example, the first study on the list of approvals in 2013 was the "ETPOS: European Transfusion Practice and Outcome Survey". Apparently they took data from 10,000 patients who had blood transfusions and tried to see if there was any correlations between practices such as "ratio of red blood cells to other blood component therapy, such as plasma and platelets" and health outcomes. I guess it was deemed that phoning each of the patients was impractical.
Robot Dialer: You pressed 1 to accept; can we use your data for future studies? Press 1 to accept, 2 to refuse, 3 to speak to an agent.
Robot Dialer: You pressed 2, can we contact you to ask about using your data in specific studies in the future? Press 1 to accept, 2 to refuse, 3 to speak to an agent.
Umpteen marketing companies appear to be able to afford to do this sort of calling (yes even though it's against the law for them to contact me as I'm on the no-call database [which wouldn't apply to the NHS]).
If it's too costly then the studies can hardly be worthwhile? Remember the NHS wasted £10 Billion on a single IT project over the last 10 years. What would this auto-dialer have cost? £10k in "management", couple of thousand in IT staff and set-up (join study NHS numbers with main database ID table and contact info tables, select phone numbers; set-up dialer script, test, initiate) maybe £500 in direct call costs. They most likely already have systems in place to do auto-dialed calls for disease outbreaks [UK Environment Agency use one for flood warnings].
You do know that means civil servants have written a statutory order, it has been signed by the minister (might have to be Secretary of State) and it has been placed in Parliament for a week (no vote required). [Exact details may be wrong but that is the overall concept of statutory orders].
My comment is based on a general understanding of statutory orders/secondary legislation and there may be specific reasons why it doesn't apply in this case but it appears to me to be a significant hole in the text you quote that you may not have noticed.
Reading on Wikipedia, "Statutary orders" and "statuatory instruments" seems to be particular ways of delegating law-making power from parliament. I don't think they are directly relevant here (since there has to be some enabling legislation)? But the section 251 thing already allows the Secretary of State for Health to disclose data, so if you are worried about ministers operating without parliamentary oversight, that is indeed possible....
"Your NHS number Your date of birth Your postcode Your gender and ethnicity Your medical diagnoses (including cancer and mental health) and any complications Your referrals to specialists Your prescriptions Your family history Your vaccinations and screening tests Your blood test results Your body mass index (height/weight) Your smoking/alcohol habits"
seem 'de-identified'?
A full UK postcode is very specific - not just which street, but which side and end of the street. "date of birth plus postcode" will in almost all cases identify one and only one person. This data is not actually anonymous at all.
On the other hand, the increased risks of malicious de-anonymization (risk, not certainty) have to be weighed against the obvious benefit of having a portable health record and reducing duplication and administrative overhead if you are taken ill and have to visit a hospital or a doctor who's not your GP.
That's not the system that's being discussed, though.