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How exactly would you 'de-identify' a NHS number?
Since that number is meaningless in the U.S., I guess you wouldn't care.
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That sort of data can be included in de-identified health data in the U.S. if it can be shown statistically that the individual cannot be re-identified.
How exactly would you 'de-identify' a NHS number?
A good explanation of the scheme, from Dr Neil Bhatia can be found at http://care-data.info/ It includes details of how to opt-out.
It's a long site so I'd just like to highlight the following: "The data extracted - your Primary Care Dataset - will include the following: 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…
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>" and where seeking consent was not practicable, " // 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 inform…
I guess that's what it says, practicable with regard to cost. 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…
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].
So happy I live in Scotland...
I would just like to point out that even if they "anonymize" the records it's generally not that hard to de-anonymize data. During the Netflix prize, randomly generated IDs were eventually matched to people based simply on movie ratings and matching public information in other public sources: http://www.wired.com/politics/security/commentary/securityma... With medical data, it will probably be trivial (maybe easier o…
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There was an interesting Businessweek article[1] on the sale of pseudoanonymised data to private companies in the US. One Harvard researcher acquired one such database and was able to identify some individuals: >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…
Police and researchers have provisions to request access to the database under HIPAA 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…
>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.
You can choose to have your information not included, it's an opt out system. Form is here: http://www.connectingforhealth.nhs.uk/systemsandservices/scr...
You are spreading misinformation, almost definitely not on purpose. Read about the correct opt-out form here: http://optout.care-data.info/
And not to mention that you need to know about it in the first place.