medConfidential Bulletin, 6th July 2018

6 July 2018 — MedConfidential

Firstly, we would like to thank everyone who kindly let us know when they received their letter about the new National Data Opt-Out. This helped us confirm what patients were being told. 

Clearly NHS Digital has not written to everyone who made a Type-2 objection (see below) – and NHS England, which is responsible for informing everyone else, still refuses to write to people who haven’t opted out about their new choice. Meanwhile, its virtually invisible ‘communications campaign’ stumbles on. Have you heard any of the radio ads or talk radio debates that apparently NHS England has arranged?

Also, if you’ve not received a letter yet, we’d be very interested to hear when yours shows up, because…

There’s been another mistake

serious error affecting 150,000 NHS patients has been reported in the media in recent days, after it was uncovered last week. We understand the error affects patients who set a Type-2 opt-out between March 2015 and June 2018 and whose GP practices use TPP’s SystmOne software – their opt-out choices were not sent to NHS Digital until last week.

As a consequence of this error, from April 2016 until 26 June this year, those 150,000 patients opt-out were not honoured and their confidential, identifiable data was sold to a range of organisations, including private companies. This is obviously a matter of great concern.

If you are one of those patients, you will be written to (we don’t know what the letter will say). Both TPP and NHS Digital are taking remedial action; that error has been corrected to ensure opt-outs will be uploaded properly from now on, affected GP practices were written to on Monday 2 July, and the individual patients affected should be written to by the end of the month.

Until then, based on current information, this is what you can do:

If you recently received a letter from NHS Digital about the conversion of your Type-2 opt-out to the National Data Opt-out then you weren’taffected by this incident. 

If however you haven’t received a letter, and you are over 16, and you remember opting out any time from March 2015 onwards, then we have guidance on our website for what you can do.

The guidance also covers what happens for families with children under 13, or adult dependants, under the new National Data Opt-out process. This purportedly ‘digital’ process, signed off by Ministers, separates processing for parents and children – requiring you to send to NHS Digital, by post, four pieces of ID documentation along with a seven-page form for each child. 

medConfidential’s (now improved!) GP opt-out form continues to work, as it has done since late 2013. It also lets you prevent confidential, identifiable information leaving your GP record, which the National Data Opt-out does not cover. You may wish to forward this bulletin to family, friends and colleagues who you feel might wish to check.

And finally…

With all that is changing, we do recommend you get yourself a Patient Online account if you don’t already have one, so you can see the information your GP already makes available to you. (There’s more information about this on the For patients’ section of our website.)

You may have seen the preview of the Secretary of State’s app for the NHS’ 70th birthday. We’re keeping a close eye on this – most notably because every failure of the current process could be replicated, or worse. Patient Online was designed (and redesigned) to cope with every patient; NHS Digital’s approach is apparently to focus on the ‘flashiest’ first.

As ever, we are very grateful for your continued support – for your donations and regular subscriptions, for the information you provide us, and for the great work you do in spreading the word.

Thank you. 

Phil Booth & Sam Smith

6th July 2018

P.S. The Bill in Parliament to place the National Data Guardian onto a statutory footing finished it’s House of Commons stage less than an hour ago. It is now off to the Lords, where the Government is going to have to sort out the Surveillance Camera Commissioner’s remit over NHS body-worn video cameras…

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