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.)

Now at least, patients who do have concerns can know that they need to make a choice very shortly about whether they trust a scheme that, 18 months after its last attempt, has still not honoured the opt-outs of over a million patients – a fact that NHS England is wilfully ignoring as it tries to push ahead with its still-flawed Directions for the care.data ‘pathfinder phase’.

HSCIC upgrades DAAG

As the now-statutory Confidentiality Advisory Group at the HRA is recruiting new experts, meanwhile, at the Information Centre (HSCIC), there have also been some changes.

HSCIC has listened hard, and apparently learned, and is currently consulting on a replacement for the Data Access Advisory Group (DAAG) which performed so poorly in previous years. The interim DAAG, which is operating at present, foreshadows a much more transparent, independent advisory group for the “release” of data which will be called IGARD.

You can check for yourself what the interim DAAG is doing as – unlike, for example, the care.data Programme Board – they publish their minutes and recommendations in a timely fashion on their webpage. The IGARD proposal is by no means perfect, so we have published medConfidential’s response to the consultation so you can see what we think – and maybe respond yourself. For your information, audits of commercial re-users of your medical records have begun to be published as well.

However the new IGARD will only consider dissemination of patient data, i.e. who gets to use it. The body that will now decide what data is extracted or ‘collected’ from your GP record – and the systems of every other care provider across the NHS – is a sub-committee of the National Information Board; a group called the Standardisation Committee for Care Information (SCCI).

But Who Collects What?

As you will see if you click on the link above, there’s a BIG problem with this; SCCI is not independent. Indeed, it is comprised of the very bodies that are some of the biggest ‘customers’ for data – and it has no equivalent properly transparent, independent advisory function to replace what GPES IAG, the Independent Advisory Group for the GP Extraction Service, used to do.

We say “used to do” because GPES IAG was abolished on 30 June. The one single body that stood up to care.data; the single independent group that pointed out serious problems with the multiple applications that NHS England submitted on care.data. Gone.

So the decision to suck up your data will from now on be taken by a sub-committee of the National Information Board (NIB, chaired by Tim Kelsey) which has just published a slew of ‘roadmaps’ for what it wants to do with your data in the coming years.

There is no sign of a consultation on SCCI, matching the current one for IGARD, and we strongly suspect we won’t see one – because Mr Kelsey and NHS England would far rather keep what they are doing with your data hidden from view.

Southend: “pioneering” intrusion & ignoring consent?

Elsewhere in the country, we are tracking and taking action on a number of ‘mini-care.datas’ – most urgently one in Southend, which we were compelled to report to the Information Commissioner’s Office (ICO) when a patient informed us that their GP had said that their existing opt-out would be ignored by Southend’s new “pioneer” scheme. The scheme apparently aims to use identifiable data from people’s GP-held medical records and other places to identify “high cost” patients, amongst other things.

NHS England is keeping the ICO busy with all its shenanigans; we have outstanding complaints on the million people’s (‘Type 2’ / 9Nu4) opt-outs from 2014 that have yet to be honoured, and have asked for a number of investigations – including flows of data that should be prevented by the ‘Type 1’ / 9Nu0 opt-out, but which don’t appear to be. And, of course, our Pharmacy2U complaint continues to work its way through the process.

What’s next?

Back in April/May, we spotted some serious problems with some of the ‘apps’ in the NHS Health Apps Library. We fed back using the forms provided, but heard nothing until the Major Projects Authority published its Annual Review in late June, which revealed all sorts of problems, and at which point two of the apps were silently removed.

We still have significant concerns about apps that are continuing to be endorsed in the Library right now, and have written to NHS England’s Caldicott Guardian to see what he will do about it.

For the first time, we have had a formal, substantive written reply from NHS England directly addressing concerns we raised in the care.data Advisory Group, on which we sit. We expect the reply to be published shortly. While some of the approaches NHS England has taken are only in its own interests, there is for the first time some extreme clarity and even some seemingly good news in parts.

What you can do?

Following the recent publication of the NIB’s “Personalised Health and Care 2020” Work Streams, a number of public events are being held around the country. medConfidential is attending as many (other) Work Stream meetings as we can cover, so if anyone did feel inclined to go along to one of these – and let us know how it went – we’d be most grateful:

• MANCHESTER Tuesday, 21 July 2015, 10:00 – 15:30
• BRISTOL Friday, 24 July 2015, 10:00 – 15:30
• READING Tuesday, 28 July 2015, 10:00 – 15:30

(The first meeting in Sheffield happened earlier this week.)

In other news, we are very happy to report that medConfidential has been awarded a grant from the Joseph Rowntree Reform Trust Ltd, to help continue our work to defend the confidentiality and rights of the 900,000 – 1,600,000 people who have not had their opt-outs honoured – and, of course, everyone else as well.

We still need your help to ensure that every flow of patient data is made consensual, safe and transparent; it’s a mammoth task, of which care.data is just one component, so your support – including the information that many of you provide to us – is greatly appreciated. Thank you.

It’s shaping up to be a busy September. Phil is trying to persuade Sam to buy some (cheap-ish) ads outside NHS England’s office, but hasn’t had much success. What do you think should be on them?

Enjoy your summer; we’ll still be here.

Phil Booth and Sam Smith
medConfidential

18th July 2015