What does the NHS do with your data?

9 April 2017 —  medConfidential

medConfidential Bulletin, 9th April 2017

Where does your data go? And do you know? These are questions to which we’ve been getting you answers for three years or so, but now you have an opportunity to ask these questions too… Local elections are coming up, and political parties want your vote…

But first: 

What just happened?

In a 280-page PDF from NHS Digital is one item worth noting; “Programme 12: General Practice Data for Secondary Uses” (item C4 on page 56) with a deadline of this Christmas is – as far as medConfidential is aware – the first public sighting of… the return of care.data

So, although the Government has yet to issue the necessary CAG Regulations; or ‘one strike and you’re out’ sanctions for data misuse or abuse; has failed to close the “promotion of health” (i.e. Pharma marketing) and commercial re-use loophole; still hasn’t put the National Data Guardian on a proper statutory footing, let alone responded to the Caldicott 3 review; is mute on whether you will have to opt out again, and whether cancer patients will have their data copied anyway; and wants to copy data to any Government department under the Digital Economy Bill; it seems someone is eager to flood the “National Data Lake” we mentioned in our last bulletin.

What’s happening next?

Unless you pay close attention to NHS internal meetings, you could be forgiven for knowing little about how the NHS talks to itself, but the 44 Sustainability and Transformation Plans (STPs) is the jargon for a new NHS reorganisation that really matters. To you.

The NHS England website describes them as follows:

NHS organisations and local councils are developing shared proposals to improve health and care. Working in 44 geographical areas covering all of England (called ‘footprints’), the plans are led by senior figures from different parts of the local health and care system.

It is this top-down-mandated, bottom-up-driven restructuring into STP “footprints” that has led to the mega-CCG mergers in Manchester,Lancashire, and Liverpool, with more mergers planned in other cities of the North, and across the rest of England (e.g. in Buckinghamshire).

Why you should care is that this ‘STP shuffle’ will put your local council in partial control of where your medical records get copied – including how much of your personal data will end up being dumped into a “National Data Lake”.

In ducking responsibility, as they have since care.data started, NHS England claim all decisions will get made “locally” – but they can choose to send more cash for more data…

What can you do?

If you have elections in May, some of the candidates will end up choosing who sits on your local Health and Wellbeing Board.Thatwillbethebodythatchooses how your area’s health budget gets spent – what gets funded, what gets cut, and what medical records they copy to the Data Lake in return for more resources…

Given this, we suggest you ask your council candidates a few questions that might them focus on the issues and evidence, and then help you and your community decide who’s paying proper attention to the impacts on your health and care, and medical confidentiality:

  • Community: Do they agree that you should be told how the council and NHS use your data?

  • Contribution: For 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??

  • Autonomy: What are their local priorities for reducing problems that put a strain on your local NHS?

If you get answers, please post them on facebook and other appropriate forums, so your neighbours can see them too; here are some ‘localised’ posters you can print out to help you.

If you’d like us to send you some, already printed out, we’re offering five A3 posters for a £5 donation – when sending us the money, just add a comment with your address and we’ll send you posters for that postcode. (N.B. If you don’t add the comment, we won’t see your address!)

We’re glad to see a number of you are quite happy with our new badges (with text | no text) and are immensely grateful for the £20 donation medConfidential gets every time someone buys one. Thank you.

More next time on who wants to go fishing in the National Data Lake…

Phil Booth & Sam Smith

9th April 2017