NHS Summary Care Records and “Secondary Uses”

The NHS over the past few years have had a series of failed or otherwise hampered IT systems.

What are NHS Summary Care Records

The one that has been in the back of my mind for a while now is the NHS Summary Care Records system.

NHS Summary Care Records can generate headline information about you available centrally. It is going to be accessible from all the NHS installations across the country.  This would enable medical professionals to get fundamental information about you for your care in an emergency situation. 

This to me sounds great! 

But wait for it, there is a catch. 

This data will also be subject to “Secondary Uses”. If you are wondering what “Secondary Uses” means is the clinical term for “sold on to corporations”. Meaning that secondary parties can have access to your medical records.

Privacy issues around Medical records

I’ve done a bit of searching around and I find no-one who seems to share my view of the situation. 

I think that we should embrace technology and what it can achieve for us. But I absolutely don’t want to give my medical data to corporations. So they can make decisions about my insurance premiums, or for big-data companies to market new products at me for my various ailments.

Online there seems to be a lot of people expressing their opinion at one of the two extremes but nothing in the middle. 

I find people touting the good old. “I’ve got nothing to hide – go ahead” argument (don’t get me started, this does NOT hold true under scrutiny)

And the opposite “but my data might get leaked to the world – lets not” argument. 

In short: you might not have anything to hide at this moment in time, but if that changes, you may learn the hard way that the Internet never forgets. Let’s also not forget that your data might get leaked. Given these opposing views, surely the right thing to do is to work together to make the various systems are more secure so that those who want to can indulge in all the possible benefits.

I sent this email to my GP

In an effort to try and find the middle ground I have just emailed my GP:

“Hi,
I have been reading a lot about the NHS Summary Care Records and in principal the idea of my information being available for my emergency care seems like an obvious benefit to have.  However, I also understand that these records will be subject to ‘Secondary Uses’ which may include the sale of the data to corporations – this I find somewhat disturbing.

I would appreciate knowing the position of my practice and its point of view and I would be interested in finding out if it is possible to have a Summary Care Record, whilst maintaining my privacy by disallowing my data for ‘Secondary Uses’.

Thanks in advance.”

I will update this article with any response that I receive.

*** UPDATE 1 *** My GP invited me in to discuss the matter. His position was one of a lack of education and basic interest, but, he was pragmatic and told me that he felt his practice had little power to change how this system was being implemented and he had very little time spare to look into it further.

**UPDATE 2 *** There are all sorts of debates surrounding data brokering and the world has changed significantly since this article was originally written. Some schools of thought suggest that we have entered the age of Internet Fuedalism and that data brokering is simply a major business that shames part of how our modern society works. We think this topic is incredibly complex and deserves debate. If you are looking for more material on it have a look at the Electronic Frontier Foundation.

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