medConfidential Bulletin, 18th May 2018

18 May 2018 — MedConfidential

The National Data Guardian said there should be “no surprises for patients about their data”, and so with the launch of the ICO’s ‘Your data matters’ campaign next week, we’ll see whether the NHS agrees.  

What just happened?

We are all safer when every part of the NHS respects patient confidentiality rather than bowing to the no-longer-secret, invasive and nasty policies of the Home Office; a Department we, and at least one ex-Home Secretary, know makes serious mistakes.

If you’ve been following newspaper front pages, you will know that the Home Office will only be able to ask the NHS for data where the Home Office has lost track of a serious criminal. Our congratulations go to all those who have been fighting for this, since the activities of the “National Back Office” were first revealed in 2014. The bar for data sharing is now serious crime, rather than mere suspicion (or clerical error).  

In case there was any doubt, NHS Digital commissioned its own opinion that shows how overwhelmingly this opinion is held by the British public: 98% believe it is important that the NHS treats a patient’s medical records as confidential, 97% that the NHS treats a patient’s address details as confidential too.

A name change

The opt-out you’ve known about for several years has been given a new name, and initials (NDOP). Nothing besides its name will change at this time – apart from those things which GDPR changes across the board. The data NHS Digital sells next month will be the same as it did last month.

This is the next iteration in a long sequence of a slow ‘rolling start’, more like turning the first corner than entering the final lap. In October, for example, you should be able to see more about what has been done with your data. 

The online system launching on GDPR day works only for single ‘adults’ (aged 13+) – we’ll see what future updates bring.

So of course NHS England wants NHS Digital to write letters to people in June, since neither has any direct relationship with patients. But yet again, the arm’s-length bodies of the Department of Health tried to get between you and your doctors – with a service that failed for families.

You and every patient you care for can continue to express your wishes via your GP. For now.

So what will change?

The National Data Opt-out now has an official public name. Which is utterly meaningless if you’re a patient, but really meaningful in how the NHS looks at itself. Very few of the promised improvements or safeguards are in place yet.

Should the fact they have given your opt-out a new name (with no other immediate changes) mean you have changed your mind about your consent choice, our updated 2018 consent leaflet reflects the current possibilities. But since the only thing that has actually changed is the name, you can use it just as readily before next Friday as you can after. 

What’s next?

medConfidential keeps working even when we’re not sending newsletters; we won’t spam you if there’s nothing important to say. As you can see from this Bulletin, we are approaching another critical time for patient confidentiality that we hope can be negotiated with far greater success than in 2014! If you appreciate our ongoing efforts, we accept donations

Thank you for your support.

Phil Booth & Sam Smith

18th May 2018

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