medConfidential Bulletin, 21st April 2017

21 April 2017 — medConfidential

Though the political focus is on the General Election, the ‘STP shuffle’ remains highly significant. Whatever the result in June, both funding and decision-making for health and care services will be increasingly devolved to local areas.

What’s happened? General Election!

What medConfidential will be looking for in every party’s Manifesto is rather simple:

Will patients know how their medical records have been used?

A straightforward “Yes, they will” or “No, they will not” will suffice.

Every flow of data into, across and out of the NHS and care system should be consensual, safe, and transparent – there need be no conflict between good research, good ethics and good medical care.

We shall provide more detail on how this relates to current issues like Genomics and AI in due course – but the question to which there must be a clear answer, for whatever the future brings is: Will you know how data about you is used?

Update on DPA Section 10 notices

Last December, NHS Digital and Public Health England (PHE) were sent hundreds of Section 10 Data Protection Act notices by patients who had opted out, insisting that their data should not be sold – even through a loophole.

Though there were some ‘boilerplate’ responses, both bodies effectively ignored every single one of those notices. Patients’ data continues to be sold for commercial re-use, and further problems have emerged:

  • PHE considers itself exempt from existing opt-outs; will it make you opt out again?  

  • What about the NHS? Will the Government’s response to Caldicott 3 force yet another opt-out?

It is understood the Caldicott Consent Model should include overrides – and some exceptions, where required by law – but this should not be at the whim of Public Health England, which still copies patient data to companies in secret. PHE said it was becoming transparent, but its own actions give lie to this and still it demands more data.

If you want to know public health information about your area, PHE thinks you should use a site called “fingertips” – which gives you a mountain of statistics, a trowel, and suggests you start digging. If you want to see the biggest public health issues in your area, you may want to try this list instead.

Speaking of digging…

Questions for the elections; what is your lived experience of the NHS?

With STPs and financial devolution on the way, it’s the candidates who are elected in your area who’ll be making decisions that will impact directly on your, your family’s and your community’s health and care services – and the exploitation (or not) of your medical records.

In the run-up to the elections, all you need do is ask the people who canvas you some straightforward questions, share some of what you know from your own experience, and put up a poster to encourage your neighbours to do the same. Here are our suggestions:

  • Does [the candidate] agree that everyone should be told how the council and NHS use their data?

  • Given the political choices that are changing the NHS in your area, how would your own or your family’s past experience of the NHS have been different?

  • What are [the candidate]’s priorities for reducing problems that put a strain on your community’s NHS and care services?

If you get answers, please do post them on facebook and in other appropriate forums, so others can see them too.

Phil Booth & Sam Smith

21st April 2017