Wednesday, 22 January 2014

More on the UK Sellout of NHS Medical Data and Records: How to Opt Out and How It's Being Hidden

Just a few days ago I once again pointed to the relentless determination of the UK government to set up a sellout of individual medical data and information, collected in the medical records of the ordinary patients of the National Health Service who have never signed up as research subjects , to private interests, such as the pharmacological industry and health insurance companies. This apparently without any type of safeguard for the many misuses easily imagined as an effect of such official recklessness.

Now it turns out I was wrong. There is one safeguard, namely that you as an individual UK citizen may actively opt out of the scheme while still using the benefits of the NHS. This possibility is, one guesses, mandated by basic legal consideration and presumably by EU constitutional and human rights law as well. However, the UK authorities seem to be doing their very best to hide this option from the public, possibly realizing that the free access to private heath data of private business interests making rather easy identification of individual identities quite likely will scare the living daylights out of a lot of people. Of course, thereby making the whole design stink even more in the process.

In any case, luckily, there are vigilant bloggers around, who sniff out scams like this and provide the service to citizens that public authorities paid for the purpose fail to do. In this particular case, Med Confidential tells you more exactly how this way out for anyone who don't want to risk the substantial downsides of the "business friendly" attitude to privacy and confidentiality championed by Mr. Cameron's government has been actively obscured and how you may access and use it – providing easy to download links to the opting out form you need to fill out and submit for yopur right to take legal effect,

Read more here!

Sunday, 19 January 2014

UK Set to Sell Out it's Population's Medical Data and Records to Private Industry and Health Insurers

I posted almost a year back about a then apparently more restrictive, but to my eyes still outrageous, move of the UK government to frivolously open up a genomic database created out of the medical records and samples collected within the NHS in the course of normal health care (for diagnostics, safety and quality assurance purposes) for research not only by public research institutions, but also private companies in the pharmacological and medical technological area. Now, if this lengthy account is to be belived, it transpires that, apparently, the data base, which is due to be launched later this year, is not only genomic, but simply a general health research database created out of the entire medical history of the entire NHS "cohort", complete with rather specific personal information. It will not contain straightforward identification of individuals, but even government spokespeople admit that the "pseudo-anonymization" planned to be applied allows any research institution with access to a lot of informationto re-identify individual people, not even mentioning at all the recent discovery that just a little bit of genetic information together with publicly available online information can be used to trace people who have anonymously donated tissue to research.

But that's not the end of it: among the players which will be eligible to apply for access to this goldmine for – true – advanced medical knowledge and – equally true – the health business opportunity of the century are – hold your breath – health insurance companies. Yes indeed, the very same one's who are widely known to do their very best to exclude those people who are in most need of their product from buying it and to refuse paying out compensation if they are ever accidentally let in. These are the ones who the UK government and the NHS experts behind the new Health and Social Care Information Centre (which will be responsible for handling the database and provide the access) think are suitable parties to be helped to identify the heath frailties of individual persons, their children, family and so on. Mark Davies, who is something as peculiar as the "public assurance director" (let that one roll around your palate for a second, doesn't it taste a bit like "top blinker"?) of the HSCIC, pressed by reporters, admits a "theoretical risk" – apparently having never entertained the obvious thought that for an insurance company, identifying people's health risks as part of the general process mentioned above is a rational business procedure. If it's possible (and it is - even more easy than admitted by Mr. Davies), it will be standard procedure for a number possible purposes – everything from even more effectively than now screening people in need out from health insurance or compensation payment, to restructuring existing insurance schemes to more effectively weed out the potentially unprofitable customers by having no product that suits them. The "assurances" about transparency ring hollower than ever before as Julia Hippisley-Cox speaks of the right of people to be able to know who sits on their data and a "clear audit trail". Won't matter much when coverage of your recent surgery bill is being refused, will it?

Not very surprisingly, there's been criticism and debate, but the UK government seems to entertain no plan of setting a few sensible safeguards for those ordinary people who are supposed to profit from the scheme in place. Such as forcing private industry to commission any research using the database from public research institutions – thereby making redundant the reckless move of transferring data into the commercial secrecy protected hands of these far from public interest oriented parties, where as critics point put, no one will know where they will then go or how they will be used.

Read more here.