UK citizens are already subjected to one of the heaviest government surveillance regimes anywhere in the world.  Our movements are tracked by thousands of CCTV cameras, our internet searches, purchases and buying habits are recorded and even our calls and emails are monitored for key words.  Does privacy exist at all?  The answer to this may rest in the UK government's next health initiative: it now intends to put your and your family's personal medical records up for sale to pharmaceutical, private and public companies.  Privacy has left the building...

Privacy rights going the way of the Dodo

Would you be surprised to learn that UK governmental surveillance of its citizens is 'endemic' and on a par with China?  It might explain why a consultation is underway with regard to changing the National Health Service (NHS) constitution to presume automatic patient consent for sale of their medical records, via the Clinical Practice Research Datalink (CRPD).  Very little media fanfare means that, in essence, this change is likely to occur without explicit permission from UK citizens.

Whichever way you look at it, we are living in a society driven by the demands of voracious corporate appetites, where respect for an individual's right to personal privacy is almost extinct.  We've swallowed the erosion of our human rights thus far because the encroachments have been introduced quietly and gradually.  But surely the sale of private medical records is a leap too far?

The background

In March 2011, the UK government pledged to build a consensus on using e-health record data in its 'Plan for Growth'.  The CPRD was launched in October 2011, and became fully operational in April 2012.  Given that that was only 6 months ago, it's hard to see how the nascent CRPD could be considered "… by many the GOLD standard…" or how "… its usage has resulted in over 890 clinical reviews".  It exists within the offices of the UK government’s medicines regulator, the Medicines and Healthcare products Regulatory Agency (MHRA), in London.  Its stated purpose is to "... maximise the health gain that can be achieved through the use of anonymised linked NHS data in research studies and help improve the way clinical trials of innovative medicines can be undertaken". This is a regulator that has frequently been criticised for its revolving door with Pharma interests. 


Advocates of the scheme propose that greater scrutiny of medical records will increase the quality of healthcare.  At the outset, general practitioner (GP) patient information, hospital records, disease and mental health registries and genetics databases are being targeted, with further areas to come online at a later date.  While the government intends for patient records to be anonymous, at the time of writing we couldn't find a single mention of exactly how they are going to achieve this.  And the NHS doesn't have a great track record either.  In 1997, the Caldicott committee review found more than 60 illegal information flows in the NHS.  Plus, there's a loophole in the Data Protection act (1998) that means that database operators can claim anonymity if they themselves can’t re-identify records — even if others can!

Does anonymous really mean unidentifiable?

Ask any health researcher worth their salt and they'll tell you that a lot of data are useless when they’re completely anonymous.  Real nuggets are found when you can link health characteristics together, and to do that you need identifying information.  But that's probably not going to be an issue, as most computer scientists today agree that anonymous databases of information just don't exist.  The fact that 'reidentification science' even has a name is also a giant red flag. 


Apparently, reidentification information that is actively sought is almost impossible to protect against.  This was amply demonstrated by a graduate computer science student in the mid-90's who send the Governor of Massachusetts his own 'anonymised' medical records!  The consensus seems to be that scrubbing data is simply ineffective, a view reinforced by the more recent AOL and Netflix scandals.  

Risk vs benefit or just plain exploitation

Judging from comments made by UK citizens who have seen what is planned through the CPRD, they feel the potential for exploitation far outweighs any gain.  This is certainly the feeling among the people we've informally questioned.  Concerns over anonymity and the risk of abuse by Pharma companies, employers, the media and government far exceed any gain in terms of promoting the quality of healthcare.  And we shouldn’t forget that another important driver of the scheme is to encourage pharmaceutical research in the UK!  It might be good for business, but it certainly isn’t good for health.


The fact that people aren't being asked to specifically opt in to the scheme, but are instead required to go to the trouble of opting out, just makes it seem all the more sinister.  It's not new drug development that's going to drive up the quality of healthcare, it's dedicated dietary and lifestyle education and monitoring that's needed. 

 

Call to action

  • First and foremost – understand that you can opt out!

     

  • If you live in the UK, write to your GP and object to your family's records being used under the CPRD scheme.  Ask for the GP’s practice to code the records so they are protected from the scheme and request confirmation that this has been done

     

  • Share this article widely with anyone you know who's living in the UK, and alert your family and friends so that they too can opt out


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