Pseudonymisation

This post concerns the English NHS but, as many readers live in England, it’s important they know what’s happening to their medical data.

What is happening is that it’s being sold to organisations such as university research departments, insurers and drug companies which will be able to apply to the new Health and Social Care Information Centre (HSCIC) to gain access to the database, called care.data.

If an application is approved then firms will have to pay to extract this information, which will be scrubbed of some personal identifiers (seriously?), but but enough to make the information completely anonymous - a process known as pseudonymisation.

Starting in March, medical data covering the entire population of England, will be uploaded to the repository controlled by the new arms-length NHS information centre.

A leaflet is being sent to every household explaining the new database, with the patient being given an ‘opt out’ choice, but how many people will not realise the importance of this further intrusion into their personal lives?  Of course, if an ‘opt in’ rather than an ‘opt out’ option had been offered, then the population may have scrutinised the leaflet more thoroughly and decided against it.  

This is all part of the agenda of government and big business and the on-going privatisation of the English NHS.

Recently the FT reported that the EU/USA trade deal has been ratified. (Apologies no link but it’s behind a paywall). It appears David Cameron has been pushing hard for this as it opens up all public services to tendering from USA private health giants.

Did anyone watch the Dave: Loan Ranger programme on Channel 4 last week?  Dave Fishwick was investigating pay day loan businesses and how his bank, Burnley Savings and Loans, could help reduce the scandalous interest rates charged.  He trudged round some of the big lenders in an attempt to pay off the loans of some unfortunate people.  What he found was that every address given on websites was solely a forwarding agency.  Then he researched further and found the companies involved were all linked to global financial organisations; thus profits were going out of the UK.  The series continues this week.

The link between the new English NHS database and Dave’s pay day loan series may seem tenuous to some, but once this database is up and running it will be obvious that the English NHS will become another huge earner for foreign investors.

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The Underhand Methods of Data Gathering

 click to enlarge

A friend of mine is staying with friends locally as her house is having some much needed serious structural work.  Because this work may take some months, she decided to register with a local doctor because she requires regular checkups for a serious problem.

All was well until she received the above letter, (my scan didn't cut off the right hand margin, the letter was sent with the end of the second and third lines missing), from Practitioner Services, NHS Scotland, Data Quality Team.  It was address to her and she wasn't comfortable with the questions asked.  She was more uncomfortable with what the reverse contained:

'I declare that the information I have given on this form is correct and complete.  I understand that if it is not appropriate action may be taken.  To enable the NHS to confirm that I am lawful and ordinarily resident within the United Kingdom and for the purpose of prevention, detection and investigation of crime.  I consent to the disclosure of relevant information from this form including to and by the NHS Business Services Authority, Immigration and Nationality Directorate, the Department for Work and Pensions.  HM Revenue & Customs and Local Authorities.


Signed.................      Date........'

It goes on about medical records, changes to details and data protection and confidentiality.

The letter was passed to me for my opinion and it was agreed I would telephone the Aberdeen number given on the heading to see if we could discover why they require this information when the registration with the local GP had been more comprehensive.

The conversation went like this:

Me:  Could I speak to someone in connection with a letter regarding GP registration?

I was asked for the area and another voice answered so I repeated the question.

Voice 2:  Why do you want to know?

Me:  I want to know if completing this form is a legal requirement.

Voice 2:  Mmm there must be a problem with your GP registration.

Me:  There is no problem with the person's GP registration and that has been checked.  But I'd like to know if this is a legal requirement as on the reverse there is the threat of action if the form is not completed correctly.

Voice 2:  There may be problems with the GP getting hold of the person's records.

Me:  There can't be because the form doesn't ask for the name and address of the former GP who would hold the records.  Is the recipient of this letter legally bound to complete it and return it to you.  That's all I want to know.

Voice 2: (becoming irate)  It should be returned.  What's the name on the letter and I'll see if I can find out what the problem is.

Me:  It doesn't matter what the name is, I would just like to know if this form is a legal requirement.

Voice 2: I can do nothing more for you. (Slams down the telephone).

As far as I could verify the NHS has no legal right to threaten action to anyone not completing this type of form, yet they imply, by the wording, that they do.  I find this very concerning as it would appear NHS Scotland is building up a data base under false pretences.

My friend's friend has decided she will consult her solicitor about this deceit but not so many people are in a position to spend money on legal advice and many would complete the form without question.

The reason I'm highlighting this incident is because I see this creeping intrusion into our privacy as something condoned by government.  How many more forms - of a similar design but on other aspects of our daily lives - are sent out to unsuspecting individuals, who unwittingly give personal information?

I trust Captain Ranty and Anna Raccoon will be pleased I've learned to question government departments.

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