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.
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.
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.
21 July 2017 — medConfidential
A longer version of this newsletter is available on our website.
Before everyone starts their summer, here are a few ‘tied-up loose ends’ that had previously been left dangling. Continue reading
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.
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
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?
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.
25 November 2015 — 38 Degrees
Yesterday morning 38 Degrees members’ views, including yours, were presented loud and clear to the government. Four 38 Degrees members (plus two staff) gave our views to the government inquiry on how our medical records can be used. It’s fair to say we made quite an impact!
Continue reading
19 November 2015 — 38 Degrees
The government is trying to push through the plan that would allow private companies to access our personal medical data and increase privatisation of the NHS. But together, we could stop it. [1]
Continue reading
23 October 2015 —medConfidential
Quite a lot has happened over the past week. Events are still unfolding, but there has been progress in three key areas.
What just happened?
17 July 2015 — medConfidential
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.)
12 JUne 2015 — medConfidential
chaos.data
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.
1 June 2015 — medConfidential
Over 700,000 people are still waiting for a public announcement about what has happened to the opt-outs they made in 2014 – an announcement that was delayed “until after the election”.
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.
21 March 2015 — medConfidential
This is just a brief update; we hope to have more substantive (good) news soon, but something else we think you should know about is happening and we wanted to give you the heads-up.
Urgent action – your health data and beyond
7 November 2014 — 38 Degrees
Care.data – the scheme that would give our personal medical data to private companies. It’s being rolled out in just a few weeks’ time. [1]
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.
2 May 2014 — OurNHS
Public health professor Allyson Pollock has called on parliament to pass three crucial amendments in next week’s care.data debate to ensure public health, not commercial interest, is at the heart of the new NHS IT system.
17 March 2014 — OurNHS
Government amendments on care.data have done little to reassure critics of the project – could an alternative amendment still buy some time to sort out the mess?
The New Dark Age 