altus Posted February 20, 2014 Share Posted February 20, 2014 That's question number 2, just underneath the first one that asks why they thought having an opt out instead of an opt in scheme was acceptable. Interesting point in The Register's article on Facebook buying WhatsApp: If Facebook values your phone book at $42, or £25.24 today, what do you think your lifelong medical record is worth? The health industry is a colossal business, much bigger than internet social networking, and pharmaceutical companies desperately need the data to reduce the risk on their own drug research planning. They have the means and willingness to pay for this data. So surely the market value of a medical record, given the many other valuable uses it can be put to, must be in the thousands of pounds? Maybe mention that and point out just how much effort various companies are likely to put into deanonymising the data. Link to comment Share on other sites More sharing options...
Obelix Posted February 20, 2014 Share Posted February 20, 2014 There was a nice incident in the late 1990's about some deanonymisation in the US health records, as well as the AOL web searches. I'll add that WhatsApp question in as well, thanks for that I'd not got round to my El Reg fix yet today. Link to comment Share on other sites More sharing options...
I1L2T3 Posted February 20, 2014 Share Posted February 20, 2014 Interesting point in The Register's article on Facebook buying WhatsApp: Maybe mention that and point out just how much effort various companies are likely to put into deanonymising the data. Think what it could be worth to an insurance company, if it needed a full record for helping it avoid a full payout on a claim. Some life insurance claims can be for hundreds of thousands of pounds. ---------- Post added 20-02-2014 at 16:23 ---------- Ask him if he can find out exactly on what they are they are planning to release as part of the pseudonymised data set so IT security experts can assess exactly how hard it might be to deanonymise it. I don't think any of us are going to like the answer to that question. My guess is the data design has been deliberately spiked to allow for deanonymisation. If the insurance industry has been involved in any lobbying around care.data that is exactly what they would have asked for - they will have made s case for exact dates of birth, gender etc... in the extracts. Link to comment Share on other sites More sharing options...
saunaman Posted February 20, 2014 Share Posted February 20, 2014 Let's just say that if I had money to invest , I'd be looking at those firms which provide cooling systems for data storage banks ........... Link to comment Share on other sites More sharing options...
altus Posted February 20, 2014 Share Posted February 20, 2014 I don't think any of us are going to like the answer to that question. My guess is the data design has been deliberately spiked to allow for deanonymisation. If the insurance industry has been involved in any lobbying around care.data that is exactly what they would have asked for - they will have made s case for exact dates of birth, gender etc... in the extracts. I don't think we'll get it either but asking the question and not getting an answer will raise doubt about the scheme in the mind of the politician. As for the data being spiked, I don't think it needs to be. If they do actually release the details before the data slurp IT security people will find out how to deanonymise it pretty quickly, which will soon get in the media and that will be embarrassing for all involved with the project. That is why I don't think they'll release it before hand. The same thing will happen just after the scheme is up and running but then they'll say "Oh well, you've all signed up to it now anyway". Link to comment Share on other sites More sharing options...
I1L2T3 Posted February 21, 2014 Share Posted February 21, 2014 I don't think we'll get it either but asking the question and not getting an answer will raise doubt about the scheme in the mind of the politician. As for the data being spiked, I don't think it needs to be. If they do actually release the details before the data slurp IT security people will find out how to deanonymise it pretty quickly, which will soon get in the media and that will be embarrassing for all involved with the project. That is why I don't think they'll release it before hand. The same thing will happen just after the scheme is up and running but then they'll say "Oh well, you've all signed up to it now anyway". I'd love to see the extract schemas and the pseudo anonymisation algorithms. The thing about this scheme is it could be so different with a couple of tweaks: 1. Make the data less granular in certain respects 2. Fully anonymise at source 3. A cast iron commitment to never sharing data except to research partners If this had been sold as all about making the NHS better it would be good. But then you have to step back and remember that the Tories don't want an NHS, and that orange book liberals at the head of the LibDems would tear the NHS down too. Then you have to remember as well that care.data isn't the first attempt at this kind of thing: Labour are behind the concept too. Link to comment Share on other sites More sharing options...
davyboy Posted February 21, 2014 Share Posted February 21, 2014 Just to show how easy it is to find someone. I went onto a family history site and typed in my g/fathers name. Someone had put his family tree on line and we shared the same g/f. His e mail address included his initial and surname so I looked up his parents on Free BMD knowing his uncles' names. I also found his marriage, wife's maiden name and names of his two adult children. Using 192.com I found his address and that his children still lived with him. I'm an amateur, think what a pro could make of the NHS info. Link to comment Share on other sites More sharing options...
altus Posted February 22, 2014 Share Posted February 22, 2014 Very good article about care.data by Ben Goldacre in the Guardian today. Link to comment Share on other sites More sharing options...
NorthernStar Posted February 24, 2014 Share Posted February 24, 2014 Thought I'd share this article I was just reading:- Hospital records of all NHS patients sold to insurers Link to comment Share on other sites More sharing options...
esme Posted February 24, 2014 Author Share Posted February 24, 2014 Taken from that article just for all the people who ask what can go wrong and what's all the fuss ...It boasts that “uniquely” they were able to combine these details with information from credit ratings agencies, such as Experian, which record the lifestyle habits of milllions of consumers. The calculations were used to advise companies how to refine their premiums, resulting in increased premiums for most customers below the age of 50, according to the report dated last March. The 274-page report describes the NHS Hospital Episode Statistics as a “valuable data source in developing pricing assumptions for 'critical illness’ cover.” It says that by combining hospital data with socio-economic profiles, experts were able to better calculate the likelihood of conditions, with “amazingly” clear forecasts possible for certain diseases, in particular lung cancer. Phil Booth, from privacy campaign group medConfidential, said: “The language in the document is extraordinary; this isn’t about patients, this is about exploiting a market. Of course any commercial organisation will focus on making a profit – the question is why is the NHS prepared to hand this data over?” So profit wins over health, this is nothing to do with reducing costs or improving a service for the people who need it. I like the last bit The Department of Health said: "The rules changed last year so this would no longer be allowed. Information like this can only be accessed now if there is a clear benefit to improving health or health systems."Which is a bit like bolting the stable door after the horse has left, Insurance companies no longer need to ask the HSCIC for this type of data, they already have it, they can ask for fully anonymised data now, no birthdates or ages and simply correlate with the data they already have to trace it back to individuals Link to comment Share on other sites More sharing options...
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