The private medical records sparking a very public row

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It was last month that leaflets began dropping through the letter boxes of every single household in England.

Some have already been consigned to the recycling bin, many without even being glanced at and for every one that has been studiously read, a dozen or more are still sitting on kitchen tables amid piles of junk mail.

If you haven’t read it, the gist of the leaflet was this. The NHS is about to amass the medical records of every GP patient in the county into a single database. The benefits of the move, its said, are manifold.

For a start it will improve treatment. The idea is that by giving researchers access to such huge amounts of data they will be able to more accurately monitor the effects of specific drugs. By pooling medical records it will also provide a more detailed picture of the nation’s health and as a result highlight different diseases and conditions that may require more NHS investment.

Just in case there was any doubt, the literature adds, “This is an opportunity for each of us to help the NHS provide high quality care for all.”

What’s not to like? Well according to a number of privacy groups, quite a lot.

For a start the NHS has not been entirely clear who will be able to access the data and while there have been reassurances that all records will be anonymised there are doubts as to just how secure the project can be.

The much publicised flop of the NHS IT project which was supposed to make patient records paperless, but which in fact left taxpayers with a rising multi-billion pound bill means confidence in NHS management is not exactly at an all time high.

“There has been a lot of reorganisation recently within the NHS,” says Phil Booth, coordinator of the campaign group medConfidential. “However, while the most obvious changes and difficulties have been well-reported, others are passing pretty much unremarked.

“However, the way that patient information in England is collected, passed around and processed fundamentally alters the concept of doctor-patient confidentiality, yet too few people are aware of what is happening.”

The original plan had been to begin extracting data last autumn, but after pressure from some GP groups, medConfidential and others, NHS England bowed to confidentiality concerns. However, while agreeing to postpone the pooling of data until spring, concerns have now been raised about the effectiveness of the publicity leaflets with campaigners accusing the NHS of failing to properly promote the opt out option.

“Every month, details of your diagnoses, referrals, health conditions and treatments plus ‘lifestyle’ information such as smoking and drinking habits and whether you are obese will be extracted,” says Booth. “Also, it is important to note that the information will not be anonymised when it leaves your GP’s surgery; it will be extracted with your personal details still attached.

“The Health and Social Care Information Centre will then determine which parts of your information it will share with others and requests for identifiable data will be passed on to another body, the Confidentiality Advisory Group.

“Even if your information is passed on or published without identifying details, your anonymity can never be guaranteed. Re-identification of apparently ‘anonymous’ data can be surprisingly easy.”

It is understood that the extraction of GP records is only the first step in a far bigger programme of data pooling. Hospitals have been told to be ready for similar uploads from later this year and social services from 2015.

“It is regrettable that NHS England decided not to include an opt out form with the leaflet which it sent out,” adds Booth. “In the information it has provided it says you should ‘speak to your GP practice’ if you want to stop your or your family’s confidential medical information being uploaded and passed on.

“However, that is misleading. You do not have to speak with your doctor or book an appointment. The choice to keep your medical records private is completely down to you; all you need do is inform your GP, which you can do simply by writing a letter or dropping a form into your surgery.”

The NHS has set up an information line on 0300 456 3531 or to find out more about opting out go to www.medconfidential.org.