Brent Patient Voice call on NWLondonCCG to ask NHSDigital to pause 'concerning' GP data sharing process

 

The Tories have worked out how to pull off an NHS data grab: do it during a pandemic by Marina Hyde (The Guardian)

Brent Patient Voice has written to the Brent Representative on the Governing Board of the North West London Clinical Commissioning Group calling for a pause in the current process that would see the NHS accessing GP’s confidential individual patient data. This is the letter:

 

There is great concern among patient groups about NHS Digital’s new scheme for taking confidential patient data from GP records, with patients having only until 23 June to notify any wish to opt out and the vast majority having no inkling that this is the case. We understand that concerns on these lines were voiced at yesterday’s NWL Info Governance meeting, when members heard that doctors in NE London were refusing to co-operate with NHS Digital in view of the lack of information so far shared with patients about the effects of GPDPR and their options. There also seem to be practical issues for already overloaded GPs who are supposed to process confusing opt-out applications to be made on paper within a time window of 7 days between the closing date for patients to apply and the start date for extracting data of 1 July.

 

In our view 99% of patients would be unable to comprehend the information about this scheme and the opt outs currently displayed on the NHS Digital website. The interaction of a Type-1 opt-out with a National Data opt-out is obscure and, despite the alleged three years during which this scheme has been prepared in secret, does not appear to have been thought through. It leaves many questions in the air, including the relevance of any opt outs from personal data sharing which patients have made previously under the “Extraction” scheme or care.data. Nor is it clear how the paperwork is to be signed if it can be sent electronically. The ‘explanation’ looks as if it has been written by a committee, not all of whose members agree with each other.

 

What it does say is that personal data is to be “pseudonymised” which means that the person to whom it relates can be re-identified. This is inherently risky and no good reason is given for it. If the data is wanted for planning there can be no need to re-identify individuals. Furthermore we are told that the data collected and passed to NHS Digital will not be used “solely for commercial purposes”, which means that it can be used partly for commercial purposes.

 

We cannot see how such a distinction can be monitored. In any case this rushed secretive exercise risks not just the hugely trusted confidential GP/patient relationship, free to all, that is the jewel in the crown of the NHS and its success as a valued healthcare system, but it undermines trust in any properly legitimated data collection. Surely it is madness to put this at risk by arranging for the mass irretrievable transfer of sensitive personal data out of the control of GPs to commercial interests, particularly without the direct consent of the patient?

 

Can we therefore please ask you, the CCG, its PCCC and Brent GPs to send an urgent message to NHS Digital, NHSE and local MPs demanding a significant pause in the current process:

   a. to allow for a complete rethink on the scope and design of the scheme, noting that there is a fundamental difference between census-type data which is anonymised for 100 years and continually updated data relating to individuals;

b.   to require NHS Digital to prepare a proper information campaign about the benefits and safeguards involved, which can then be the subject of Parliamentary and public debate;

c.    to clarify and simplify the opt-out process;

d.   to give GPs the necessary support for informing all their patients directly and for handling the administration aspects of the process?

 

EDITOR'S ADDITION The current form to send to your GP to opt out of sharing your data can be found HERE

Information Commissioner's Office calls on Brent Council to take measures to avoid future data protection breaches

Following the data breach by Brent Council when e-mail addresses of residents were sent to recipients of a message about a meeting acomplaint was made to the Information Commissioner's Office.

This is their response:

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You have contacted us to complain that Brent Council appears to have inappropriately disclosed your personal data.

Summary of case

In this case, your email address was cc’d into an email and disclosed to other individuals.

It would therefore appear that Brent Council has breached the Data Protection Act 1998 (DPA).

Role of the ICO

Our role is to ensure that organisations follow the Data Protection Act 1998 properly. If things go wrong we will provide advice and ask the organisation to try to put things right. Our overall aim is to improve the way organisations handle personal information.

Next steps

Although it appears that Brent Council has breached the DPA, it would seem that this is down to human error, and the ICO does not consider it necessary to take any further regulatory action at this stage.

However, we have contacted the council to advise them of our view. We have also asked that they take the following measures to ensure that similar breaches do not occur in the future:

• To remind all staff to take extra due care and attention when sending emails by double checking addresses and only sending out relevant and appropriate information in future.
• To use the bcc feature when sending emails to numerous individuals with external email domains, to ensure that email addresses are not disclosed to other parties.
• To check that all staff have undertaken data protection training within the last 12 months.
• Inform any other parties whose data may have been inappropriately disclosed in this case.

Although we do not intend to take any further regulatory action on this case, this will remain on our systems to help us build a picture of Brent Council’s information rights handling.

We will continue to monitor the council’s data protection practices, and should any regulatory action be taken against them in the future, your case may form a part of our intelligence against them. You can view any regulatory action we do take on our website, using the following link: https://ico.org.uk/action-weve-taken/

Putting ‘Pokémon Go’ into perspective

Article by Jackie Marsh, from School of Education, University of Sheffield, web page LINK

Already, tales of mythic proportions surround the ‘Pokémon Go’ app. Reports abound of stabbings, robbings, shootings, people falling off cliffsand even finding corpses as they play the game. There are concerns aboutsex offenders targeting children, and children accessing dangerous spaces to get their next Pokémon monster. A New Zealand resident recently quit his job to play the game full-time, and people joined crowds to get to a rare monster in Central Park, fostering anxieties about addiction. Now even the police are using the app to catch fugitives.

The moral panic surrounding the launch of new media titles is not new, as I have discussed previously when comparing the audience response of Disney’s film ‘Frozen’ to that of the Disney ‘Davy Crockett’ film launched in the 1950s, but what is of interest is the speed of this response, given that ‘Pokémon Go’ was only launched a few weeks ago, on July 6th. The rapid take-up of the app has occurred with little direct marketing.

For the uninitiated, the free-to-play app draws on augmented reality technology to enable players to capture and train virtual Pokémon creatures, whose images pop up, overlaid on the ‘real’ world, on a mobile device. Augmented Reality (AR) consists of a blend of the physical world and the virtual world. In this blended reality, three-dimensional images or environments are projected onto a physical object or terrain, but users are not immersed in the same way as they are with virtual reality experiences.

This is not the first app to use augmented reality to entice its users. We undertook a research study on under 5’s use of tablet apps in the UK, in which children’s engagement with augmented reality apps was examined. The research team watched as children, enthralled, made the popular charity figure Pudsey bear appear in 3D and dance to disco music using the Quiver app, or played with augmented reality animals that appeared in the ‘AR Flascards’ app. As we stated in a subsequent paper from the study which reflected on play in the digital age, “Contemporary play draws on both the digital and non-digital properties of things and in doing so moves fluidly across boundaries of space and time in ways that were not possible in the pre-digital era” (Marsh et al., 2016). Augmented reality technology is still at an early stage of development, but the hype surrounding it indicates that it has the potential to excite and is a feature that is bound to become more prevalent in the toy and game industry in the future.

The ‘Pokémon Go’ app is notable for its popularity across generations. It appeals to those who collected the plastic Pokémon monsters in the brand’s earlier incarnations, taking them back to a fondly remembered childhood pastime. It could even remind them of previous GPS location-based tagging games they may have played, such as ‘Foursquare’ (whose creator, Dennis Crowley, has said he is not at all bitter about the success of ‘Pokémon Go’).

Such nostalgic media practices are nothing new, as numerous scholars have noted, but what makes this one particularly exciting for its adult fans is the transformation of their childhood monsters into virtual characters that live in their smartphone. The app is also drawing in a new Pokémon audience, one that knows little about the original television animation, video games or toys, launched initially in 1995. It offers opportunities, therefore, for family play, as noted by commentators who are keen to identify the game’s positive elements in the face of all of the media panic. And, as some have asked, shouldn’t we be pleased that the game has got people off sofas and into their local environments?

Of course, this calculated appeal to an intergenerational audience is one that is already paying off, with the app becoming more successful on launch than Candy Crush, and Nintendo, the original creators of Pokémon, estimated to be worth an additional $12 billion because of it. For both Nintendo and Niantic, the company that created the app, the real value of the game may not be in the microtransactions it embeds, with the possibility to purchase in-game features, but in the potential commercial use of the data it collects from the people who play it. This, as scholars of children’s media practices have pointed out in relation to other digital games, raises key questions about data privacy and children’s rights.

It would seem, therefore, that the launch of ‘Pokémon Go’ has resulted in the familiar tropes of panic and hype that surround many launches of new games and toys. The longevity of the app is difficult to ascertain at this point in time. When the excitement dies down, it remains to be seen what the impact of the app will be on future markets for this kind of game.

‘Pokémon Go’ has succeeded because of its combination of GPS and augmented reality technologies, linked to a very popular media brand that already involved collecting items — thus, players enjoy the familiarity of playing with the old alongside experiencing the excitement of engaging with the new. It will be difficult for other game studios to copy that specific dynamic, but no doubt there will be many attempts to do so, and we could see location-based AR games becoming further intertwined with popular culture as people search local communities for virtual representations of toys, musicians, TV and film characters, media icons and more.

In time, apps may be made available that enable user-generated content, so that the general public can leave their virtual wares in physical spaces for others to gather. Given children’s appetite for media content created by other children, that would undoubtedly be a popular type of app, albeit one potentially fraught with all kinds of safety issues. It will be incumbent upon researchers of children’s media use to trace the risks embedded in such developments, but also to identify the opportunities they present for engaging children and young people in digital content creation.

Now, forgive me, but I really have to leave it at that and get ready to go to my local ‘Pokémon Picnic’ — who knows, I might catch an Articuno…

– Jackie MarshProfessor of Education, Chair of the DigiLitEY project.

Nick Gibb 'wrong' to attribute increase in children in 'good or outstanding schools' to academisation

By Henry Stuart republished from original article on Local Schools Network
This is another really useful article by Nick which shows how the government misleads on the basics.

 Government ministers have repeatedly claimed that one million more children are in "good" or "outstanding" schools, and that this is a direct result of their academies policy. For example Nick Gibb, speaking at the consideration of the Education and Adoption Bill on Friday 11th September, said "there are 1,100 sponsored academies that started life as under-performing schools, which is a colossal achievement that has led directly to over 1 million [more] children being taught in “good” or “outstanding” schools." (col 208)

Analysis of Ofsted Data View does indicate that it is true that one million more pupils are in schools rated "good" or "outstanding" and it is clearly the case that many schools have been converted to academies. But a basic analysis of the data suggests it was not academisation that caused any improvement.

Vast majority of improved primaries are not academies
78% of the increase has been in primary schools, where only a small minority of schools have become academies. Indeed the latest Ofsted dataset indicates that there are 167 sponsored academy primary schools that are currently rated "good" or "outstanding". Assuming these have the same average size as primaries overall (411 pupils), this gives a total of 68,537 children.

Extra pupils in "good" or "outstanding" primaries           996,604
Pupils in "good" or "outstanding" sponsored primaries    68,637
% in sponsored academies                                                  7%

So for every 100 extra pupils in "good" or "outstanding" primaries, 93 were in schools that were not sponsored academies. The percentage of primary schools that are "good" or "outstanding" has gone from 67% in 2010 to 82% in 2015 but the vast majority of this improvement has been due to improvements in maintained schools, not in sponsored academies. Nick Gibb is entirely wrong to say the improvement results "directly" from the performance of sponsored academies.

Ratings for primaries are improving but more secondaries are being rated "inadequate"
The Ofsted annual report of 2014 made note of the fact that primary schools were continuing to improve but that this was not the case for secondaries (where the majority of schools are not academies). Indeed there is a worrying increase in the number rated "inadequate":

“Children in primary schools have a better chance than ever of attending an effective school. Eighty-two per cent of primary schools are now good or outstanding, which means that 190,000 more pupils are attending good or outstanding primary schools than last year. However, the picture is not as positive for secondary schools: only 71% are good or outstanding, a figure that is no better than last year. Some 170,000 pupils are now in inadequate secondary schools compared with 100,000 two years ago.” (Ofsted annual report 2014 p8)

I have noted here that sponsored secondaries are far more likely to remain or become "inadequate" than similar maintained schools, and here that sponsored academies lead to slower school improvement. The concern is that the direct effect of sponsored academies has actually been this substantial increase in secondaries rated "inadequate".

The data indicates that the Education Bill, in forcing all "inadequate" or "coasting" schools to become sponsored academies, is likely to substantially increase the number of pupils in "inadequate" schools.

Data Notes

Data on pupil numbers come from DfE for 2010 and 2015.

Data on schools overall Ofsted ratings come from Ofsted Data View.

The Ofsted dataset on ratings for all schools (June 2015), from which the numbers of Sponsored academies that are "good" or "outstanding" were calculated can be found here.

My calculations indicate that there are 997,000 more children in "good" or "outstanding" primaries in 2015 than in 2010 and 274,000 in secondaries, giving a total of 1.27 million. However 275,000 of the extra primary pupils are due to the increase in pupil numbers. If we take these out, the total is 999,000 extra pupils in "good" or "outstanding" schools, effectively the one milliion that the government claims.

How to opt out of the NHS care data scheme

At a meeting last night I couldn't find anyone who had received their letter about the sharing of individual's medical data so it is good news that implementation has been delayed for six months.

There are concerns about the security of the system and its possible misuse. This was discussed in the Guardian 18 months ago: LINK

If you decide you want to opt out of the system, which is your right, Fax Your GP Com LINK have set uo an easy facility. This is what they say:

We’re a very small group of volunteers who think it should be very easy for people to opt out of the new NHS care.data centralised database of medical records.

Unless you opt out now, care.data will soon store the medical records of everyone in England, yours included, in one giant database.

Our confidential health information will then be shared with companies and other public bodies.

Some people we respect think care.data is, on balance, a good thing.
Some people we respect think care.data is, on balance, a bad thing.

What we know for certain is that the NHS hasn’t made it easy for you to exercise your right to opt out. We think this really isn’t wise.

The NHS leaflet explaining care.data says you should ‘let your GP know’ if you want to opt out.
But GP surgeries are busy. If you ring up wanting to opt out they’ll ask you to write to them instead. That’s fair enough – their priority is treating the sick.

It’s 2014. The NHS really should have made it easy to opt out via the web.
So we thought we’d help out.

First, we found the fax numbers for every GP practice (sadly, very few let you email them). After you’ve entered your details, our clever computers automatically fax your letter asking to opt-out of the care.data database straight to your GP practice.

It’s free. It’s secure. And we don’t store any of your personal data once your opt-out fax has been received by your GP. So we won’t email trying to sign you up for other campaigns.

Sadly we can’t make any 100% watertight promises that this site will always work. Your GP’s fax number might be listed incorrectly on the NHS website, for example.

So if you want total reassurance, it might be best to print out an opt out letter and pop it round to your GP yourself.

However, we have done this sort of thing before, and so know it works well. Back in 1999/2000 some of us built FaxYourMP.com, to make it easy for people to contact their MP, since in those days most MPs didn’t publish their email addresses. A bit like GPs, today, in fact.

We didn’t expect to have to resurrect a similar service nearly 15 years later. Frankly, we shouldn’t have had to, but needs must.

— Stef Magdalinski and friends.

The Keep Our NHS Public leaflet downloadable below contains an opt-out letter you can take to your GP: