Tuesday 21 January 2014

The Tory plan to sell access to your confidential NHS records

This article is about the Tory plans to sell off our private NHS data. If you are in a hurry and can't spare the five minutes it would take to read it, simply scroll down to the bottom of the article for tips on what you can do to stop access to your private medical data being sold off to unaccountable corporations, and some other tips on how to protect your privacy.

In March 2014 a new data repository of all NHS patient records will be created. Advocates of the scheme tell us that collecting together all of this medical data will help hospitals and university research departments conduct better research, but what they are keen to gloss over is that private companies will also be allowed access to the records and patients will have absolutely no way of knowing which companies and organisations has been trawling through their private medical records.

The confidential medical information available to private sector organisations such as insurance companies, drug companies and private health services from the care.data database will include things like NHS numbers, date of birth, postcode, ethnicity and gender. This information will make the individual easily identifiable should the organisation that has purchased the data wish to put names to medical records.

One of the chief propagandists for the scheme Mark Davies has admitted that there is a risk that private companies will be able to "re-identify" patients by matching up data from the (barely) "pseudonymised" NHS records with their own data (or with publicly available records). Davies contests that it is a "small theoretical risk", but as public assurance director for the care.data project, it is his job to convince the public that this is a good idea, so it is hardly surprising that he would deliberately talk down the inherent risks.

There is absolutely no doubt that the private sector organisations that buy up our private medical records could use them to "re-identify" patients. Davies presents no evidence to support his assertion that the risk of this happening is "small", so we can dismiss his claims as entirely speculative. By far the most important consideration when we're considering the likelihood of "re-identification" is whether there is potential profit in it for the corporations.

In order to establish that the risk of "re-identification" is high, all we need do is demonstrate that patient "re-identification" is potentially profitable, since if it is potentially profitable it would clearly be against the corporation's own financial interests to not attempt patient "re-identification".

It is not difficult to think of ways that companies, especially private health insurance companies, could profit from having access to our private medical data and the private medical data of various family members too. If you go to a private health insurance company, it is clearly in their financial interests to have access to have not just your confidential medical records, but the confidential medical records of various family members too (so that they know even more about your medical records and your family health history than you do yourself).

Given the brutality of the Tory attacks on the NHS, it seems almost inevitable that universal access to health care will be abolished and replaced with a US style system of private medical insurance if they get their own way. If such a system comes about, and the private insurance providers built themselves databases of "re-identified" private medical records, it is easy to see how millions of people with complex medical histories, or family histories of illness could be hit with astronomical insurance fees, or get outright blacklisted from the health service.

Mark Davies' justification for selling our private medical data to private businesses with clear financial incentives to "re-identify" the owners of the records is absurd. Here's what he said:

"We have private hospitals and companies like Virgin who are purchasing NHS patient care now. This is a trend that will continue. As long as they can show patient care is benefiting then they can apply."
There are numerous problems with this statement, not least the fact that NHS services are being sold off like this against the public will. 84% of the public believe that the NHS should remain a not-for-profit public service, yet the Tories have been carving it up and selling it off to private sector profiteers as fast as they can.

Even if we accept the premise that the NHS will continue to be carved up and sold off against the public will, this is still no justification for allowing our private medical records to fall into the hands of countless private sector companies.

Lets put it this way, say the Tories give away your local hospital to Virgin Health. Even if you're not absolutely furious about this, in what way is this particular hospital privatisation an excuse for the Tories to sell access to your confidential medical records to Bupa, Saga, PruHealth, Circle, Serco, AstraZeneca, Bayer, GlaxoSmithKline and countless other private sector organisations?

Another important consideration is the fact that once our private medical records have been released to private sector organisations, there is absolutely no way to put the genie back into the bottle. The private sector organisations will be able to keep copies of the data and do with it pretty much whatever they please. So even if in the first instance they make a convincing case that they will use their access to our private medical records to "benefit patient care", they will still have copies of our medical records that they can then return to time and again for whatever profit making purposes they can think of. Once our privacy has been compromised and our confidential medical records sold off to private sector interests, there is literally nothing we can do to prevent them from using our medical data in whichever way they want.

About privacy

Before I get to the "what you can do ..." section, I'd just like to add a few words about the concept of privacy and how it is under sustained attack.

Article 12 of the Universal Declaration of Human Rights states that "No one shall be subjected to arbitrary interference with his privacy, family, home or correspondence, nor to attacks upon his honour and reputation. Everyone has the right to the protection of the law against such interference or attacks".

  The whole concept of privacy is under sustained attack. The secret services have been caught out trawling the private communications data of millions of innocent people, dodgy advertising agencies install secretive web tracking software on our computers without our knowledge, David Cameron is ploughing ahead with his plan to have our Internet Service Providers monitor and censor our browsing activities and now his government is planning to sell off our private medical data to unaccountable private sector interests.

One of the notable things about these assaults on our privacy is many of them are imposed on an opt out basis. Thus our right to privacy is automatically invaded if we do not give explicit instructions to the contrary. This means that our right to privacy is entirely dependent upon our knowledge of how it is under attack. Essentially this means that the uninformed give permission for their privacy to be invaded by default.

If the ruling establishment gave the slightest damn about our right to privacy, things would be very different.

  • Instead of compelling ISPs to install David Cameron's Chinese style Internet Firewall by default, people should only be subjected to such surveillance and censorship should they be stupid enough to explicitly ask for it.
  • Instead of being allowed to install countless trackers on our computers without our knowledge, dodgy advertising agencies should only be allowed to track those that explicitly give them permission.
  • Instead of being given permission to trawl our confidential medical data unless we deliberately opt out, private companies should only be allowed to access the medical records of those that give them explicit permission.
  • Instead of allowing themselves to trawl the entire Internet without constraint, the secret services should have to convince a judge that they have reasonable grounds to suspect criminal activity before they are allowed to harvest anyone's private communications data or web browsing history.
What you can do to oppose the sale of access to our medical records

1. Opt out. All you need do is inform your GP that you don't want your medical data uploaded onto the database and shared with countless organisations. You can use the resources on this page to tell you GP that you want to opt out.

2. Write to your MP. If you are opposed to the idea of private health companies being sold access to people's private medical records you should write to your MP and explain your opposition. You can find the contact details for your MP here (Remember - if you include your name and postal address in your correspondence your MP has a statutory obligation to reply to your concerns).

3. Share this article. I'm not telling people that they should opt out, I'm giving them information and letting them decide what is in their own best interests. Many people will conclude that it is in their best interests too prevent private health companies from trawling their private medical records.

4. Live in Scotland. Scotland has a degree of autonomy over their health service, meaning that as much as the Tories would like to give away the confidential medical records of Scottish people to their corporate mates, they just can't.

A few other tips to protect your privacy

[Note - none of these tips will completely protect your privacy but they will help you make it significantly more difficult for people or agencies to spy on you or steal your private data]

1. Instead of using Google to search the net, use a proxy search engine like IxQuick.

2. Download the Ghostery Add On for your browser. This provides information on who is spying on your web activities and gives you the power to block them.

3. Use a secure connection to browse the Internet. When you have this set up correctly all website urls will begin https:/ instead of just http:/

4. Be very careful which Apps you download, some of them pinch your private data and sell it to advertising agencies.

Here are a few more tips from Privacy Clearing House

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