NO2ID • View topic - Guardian: The NHS plan to share our medical data can save ..

abernard102@gmail.com 2014-02-24

Summary:

"Many have complained about drug companies getting access to data, and this is more complex. On the one hand, arrangements like these are longstanding and essential: if medicines regulators get a few unusual side-effect reports from patients, they go to the drug company and force them to do a big study, examining – for example – 10,000 patients' records, to find out if people on that drug really do have more heart attacks than we'd expect. To do this, the UK health regulator itself sells industry the data, in the past from something called the GP Research Database, which holds millions of people's records already. This needs to happen, and it's good. But equally, people know – I've certainly shouted about it for long enough – that the pharmaceutical industry also misuses data: they hide the results of clinical trials when it suits them, quite legally; they monitor individual doctors' prescribing patterns to guide their marketing efforts, and so on. The public don't trust the pharmaceutical industry unconditionally, and they're right not to. Trust, of course, is key here, and that's currently in short supply. The NSA leaks showed us that governments were casually helping themselves to our private data. They also showed us that leaks are hard to control, because the National Security Agency of the wealthiest country in the world was unable to stop one young contractor stealing thousands of its most highly sensitive and embarrassing documents. But there is a more specific reason why it is hard to give the team behind care.data our blind faith: they have been caught red-handed giving false reassurance on the very real – albeit modest – privacy threats posed by the system. Tim Kelsey is the man running the show: an ex-journalist, passionate and engaging, he has drunk more open-data Kool-Aid than anyone I've ever met. He has evangelised the commercial benefits of sharing NHS data – perhaps because he made millions from setting up a hospital-ranking website with Dr Foster Intelligence – but he is also admirably evangelical about the power of data and transparency to spot problems and drive up standards. Unfortunately, he gets carried away, stepping up and announcing boldly that no identifiable patient data will leave the Health and Social Care Information Centre. Others supporting the scheme have done the same. This is false reassurance, and that is poison in medicine, or in any field where you are trying to earn public trust. The data will be 'pseudonymised' before release to any applicant company, with postcodes, names, and birthdays removed. But re-identifying you from that data is more than possible. Here's one example: I had twins last year (it's great; it's also partly why I've been writing less). There are 12,000 dads with similar luck each year; let's say 2,000 in London; let's say 100 of those are aged 39. From my brief online bio you can work out that I moved from Oxford to London in about 1995. Congratulations: you've now uniquely identified my health record, without using my name, postcode, or anything 'identifiable'. Now you've found the rows of data that describe my contacts with health services, you can also find out if I have any medical problems that some might consider embarrassing: incontinence, perhaps, or mental health difficulties. Then you can use that information to try and smear me: a routine occurrence if you do the work I do, whether it's big drug companies, or dreary little quacks."

Link:

http://forum.no2id.net/viewtopic.php?f=58&t=39535

From feeds:

Open Access Tracking Project (OATP) » abernard102@gmail.com

Tags:

oa.new oa.comment oa.uk oa.nhs oa.usa oa.nsa oa.psi oa.privacy oa.security oa.public_health oa.lay oa.government oa.data

Date tagged:

02/24/2014, 13:47

Date published:

02/24/2014, 08:47