NHS: Matt Hancock Still Doesn’t Tell You How Your Data Is Used – December 2019

December 2019 — medConfidential

There should be a price for misleading public statements about the NHS, whether about data or everything else.

Since our last update, and our first update in 2014, what a Data Usage Report should contain has reached consensus. The NHS has made some progress – not that you as patients will have seen any of it – and while NHS Digital calls it a Statement, rather than a Report, that is probably a better word.

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medConfidential Bulletin, 7th September 2018

7 September 2018 — medConfidential

Once more, a big thank you to everyone who confirmed to us receipt of the letter about the ‘conversion’ of your Type-2 objection to the National Data Opt-out. We are also grateful to those who shared the letter of apology for the appalling TTP error that led to 150,000 patients’ opt-outs not being honoured, and their confidential information being sold for three years.

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medConfidential Bulletin, 8th June 2018

8 June 2018 — MedConfidential

The UK’s new Data Protection Act, which implements the EU-wide General Data Protection Regulation, came into force on 25th May. Significant changes are underway, but how much will change in the NHS?

What just happened?

The day before GDPR came into effect, staff at NHS Digital were ordered not to release any “anonymised” patient data. Data releases were resumed the following day, but NHS Digital is still discussing what it terms “operational issues” (i.e. what patient information can now be considered “anonymous”) with the Information Commissioner’s Office. 

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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

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Do you want GP records shared, even if you’ve opted out?

19 August 2016 —MedConfidential

Care.data may be gone, but Jeremy Hunt is asking whether you want to keep your opt out of your medical records leaving your GP’s practice. Will you tell him what you think?

There’s a government consultation going on on into the future sharing of your medical records. It doesn’t say it clearly, but what they are asking is do you want your GP to keep your medical history private?

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Scrap the sale of our medical records!

10 August 2016 — SumOfUs

The government is about to resurrect the privatisation of our medical records, but this time without even telling us.

The government review into the care.data scheme was published earlier this month and it recommended the scheme we fought so hard against be scrapped. This sounds like a victory, but buried in the report is a new worrying scheme to sell our medical records to big corporations.

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medConfidential Bulletin, 17 July 2015: care.data – Are you their guinea-pig?

17 July 2015 — medConfidential

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Are YOU their guinea-pig? 

NHS England has finally allowed the lists of chaos.data pathfinder practices to be published. We are unsurprised that in one of the Leeds CCGs, only two GP practices have signed up.

medConfidential has been asking since last October for this information to be published, so that people can know if they and their family are to be guinea-pigs for ‘care.data round 3’. Some patients may also have questions as to why they have been volunteered in this way – so might some GPs – and we hope those supporting this mess have some sensible answers. (The boilerplate from NHS England hasn’t changed much, and isn’t very convincing.)

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care.data equals chaos.data

12 JUne 2015 — medConfidential


Over a year ago, Ben Goldacre wrote “Care.data is in chaos. It breaks my heart”. 

Absent explicit instruction from the Secretary of State, it is now clear that NHS England is just going to keep on making the chaos worse. 16 months after it was “paused”, care.data is resurfacing in a way that gives some insight into the shambolic mess it is still in.

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Marketing2U – has your health information been sold to direct marketers?

16 April 2015 — medConfidential

For years, we’ve had credible reports of highly accurate marketing that could only be based on health records. Now reports in the media have revealed “a nice little trade” in your health records – and that’s the Information Commissioner’s description, not ours.

These latest reports reveal two ways in which information about your health may be collected and sold on: from insurance forms you fill in and, in particular instances, from information provided to “the UK’s largest online pharmacy”, Pharmacy2U.

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medConfidential Bulletin 10 October 2014

10 October 2014 — medConfidential

What just happened? 

On Tuesday NHS England announced the care.data ‘pathfinder’ areas, but didn’t provide answers to basic questions like “Is it happening in my practice?” and “When will it start?” We await more details on the pathfinders, including exactly what patients (and GPs) will be told.

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