Author Archives: Phil

As the dust settles from GDPR Day…

…we’ve updated our scorecard.

One of the existing patient opt-outs has been renamed as the new National Data Opt-out, but a whole swathe of issues that have festered, unaddressed, for years still remain.

We consider these issues below, framed by questions of – and glaring omissions to – the ‘Your NHS Data Matters’ communications campaign, launched on GDPR Day.

Overview

“Your health and adult social care information supports your individual care. It also helps us to research, plan and improve health and care services in England.”

The word “us” appears to be doing a lot of work here; would patients expect “us” to include, for example, commercial information intermediaries such as Harvey Walsh Ltd?

“You can choose whether or not your confidential patient information is used for research and planning.”

All well and good, if true – but what about all other ongoing (and future) uses of patient information besides “research and planning”? Why does the new National Data Opt-out not use the far clearer, more accurate, and comprehensive Caldicott 3 definition of “purposes beyond direct care”?

If the new National Data Opt-out does cover the use of patients’ information for all purposes beyond their direct or ‘individual’ care, then why not say so? If it does not, then how does the ‘new’ opt-out meet the requirements of Caldicott 3, the recommendations of which the Government accepted in full?

medConfidential recommends: Be accurate! All public communications must in the first instance use the proper Caldicott 3 formulation, “purposes beyond direct care”.

These purposes may be further explained in terms of “research” and “planning”, but public explanations must be clear that uses are not limited to only these two purposes. To do otherwise would both mislead patients and undermine the effectiveness of the opt-out, and could lead to further collapses in public trust when people become aware of uses that do not clearly fall into either category.

“Information that only identifies you like your name and address is not confidential patient information and may still be used.”

This is utterly muddle-headed, and goes against what many (if not most) people reasonably understand is meant by the word “confidential”. While the example given is relatively benign it is precisely this loophole that, not coincidentally, led to the scandal of the Home Office MoU.

“Your confidential patient information is used in two different ways:”

This is not even close to true! We consider other uses, such as commissioning and commercial re-use in more detail below, but this statement is demonstrably untrue: take, for example, the HRA Confidentiality Advisory Group’s Non-Research Register, which contains ongoing uses such as invoice reconciliation, risk stratification, commissioning and projects that explicitly mix direct care and secondary uses.

medConfidential recommends: Don’t mislead patients! Be more clear and explicit about the range of uses to which patients’ information are put.

While public communications must be as clear and as understandable as possible, they must also be accurate – and true. The split between “your individual care” and “research and planning” (a description that we note above is itself too narrow and misleading) is far too simplistic, especially when patients are being asked to make an informed consent choice.

“Most of the time, we use anonymised data for research and planning. So your confidential patient information isn’t always needed.”

No definition of “anonymised” is provided. Using this word without explaining what it means is misleading; the natural (i.e. many patients’) assumption is that “anonymised data” is anonymous, which is not the case. GDPR and guidance from the ICO now makes it clear that what NHS Digital has been disseminating “most of the time” is identifiable data.

That only some identifiers are being removed, or pseudonyms substituted, must be explained – and linking to a third party, non-NHS information source to do this will hardly be reassuring to many patients. Hiding behind narrow legalistic reasoning and jargon never has and (especially post-GDPR) never will solve major long-standing issues.

medConfidential recommends: Follow the law! Stop implying that ‘anonymised’ is the same as anonymous, and respect people’s opt-outs for all identifiable data – don’t keep trying to find loopholes and excuses.

Benefits of data sharing

We are not aware that this is, or ever has been, in dispute. Clearly there are benefits to lawful, ethical, consensual, safe, and transparent data sharing.

Problems come when, as with the care.data programme and previous attempts at public communication, the NHS tries exclusively ‘selling the benefits’ without even mentioning any of the risks. Addressing these directly helps people make sense of the mitigations used – and such measures are no longer just arbitrary claims or assertions – and enables a more informed choice on that basis.

Who uses your data

As we note above, the narrow definition “research and planning” does not even come close to defining the full range of uses, for purposes beyond their direct care, to which patients’ information is put.

These omissions aside, and while ‘Your NHS Data Matters’ lists some types of organisations that may do “research” and acknowledges the use of patients’ information “to support the delivery of health and social care” (conflating both direct care and “planning”) it makes no mention of the types of organisations that may be involved in “planning”, and all of the activities that term is supposed to encompass.

Given that it is precisely those people and organisations that may have access to their information that matters to most patients who have concerns, this is another serious omission. Without it, how are patients supposed to make an informed choice?

medConfidential recommends: Be honest and upfront about who will have access to patients’ information; patients should not be assumed (or required) to understand the inner workings of the health and care system in order to make choices.

It may be argued that NHS Digital’s Data Release Register performs this function. However, linking to a massive Excel spreadsheet, containing literally thousands of individual entries, puts too much of a burden on any normal individual and – given the disparity between this and the level of detail provided elsewhere – begins to look like obfuscation.

We understand NHS Digital is working on a more clearly-formatted HTML publication of its Data Release Register but, in its absence, medConfidential has provided a more readable version that – unlike the current Register – contains links to NHS Digital’s audit reports, for those organisations that have been audited.

medConfidential recommends: Continue improving the transparency of data use.

For example, besides audits (and actions taken) future Registers should link to the relevant DARS and/or IGARD documentation; showing there is a process, and that the process is being applied competently and consistently is an important way to build and maintain trust.

It is unfortunate that the “NIC numbers” given in current Registers are entirely self-referential to anyone performing, e.g. a Google search; concealing or obscuring relevant parts of the process raises and persists doubts.

“Research bodies and organisations include:
– university researchers
– hospital researchers
– medical royal colleges
– pharmaceutical companies researching new treatments”

Why are “pharmaceutical companies” the only ones on this list whose use of patients’ information is qualified? Is the claim that pharmaceutical companies only receive patients’ data for the specific purpose of researching new treatments? This is patently untrue, and leads onto the further spurious claim that patients’ information will not be sold for “marketing or insurance” purposes.

While this claim may be narrowly true, at least for “commercial insurance purposes”, it omits to mention that at least some information intermediaries (i.e. commercial re-users, now sometimes referred to as “health and care analysis companies”) which regularly receive data from NHS Digital still service pharmaceutical marketers.

NHS Digital cannot state definitively who does or does not reuse patients’ medical records, as it specifically chooses not to know.

medConfidential recommends: Stop misleading patients as to the ultimate uses of their data, and stop sending out copies of everyone’s hospital histories to companies which (also) profit from servicing non-NHS commercial interests.

How data is protected

‘Your NHS Data Matters’ makes quite a few assertions about what will and will not be done with your data – though, and especially given the tendency to use jargon and narrow legalistic terms, it would be good to provide evidence and to clearly define key phrases. For example, we presume “confidential patient information” and “data” are two different things.

In addition, as noted above, linking to a third party, non-NHS information source to achieve some of this – however good the explanation – will hardly be reassuring to patients with concerns.

Another glaring omission, given the significant number organisations that do not provide health and care services, but that do use patients’ information for purposes beyond their direct care, is the list of the steps those organisations are supposed (required?) to take to protect patients’ data.

The list of steps for such organisations clearly cannot be the same as those for NHS bodies, in that some of these organisations do not “make it clear why and how data is being used”, and others hide behind the information intermediaries’ commercial reuse contracts to, e.g. measure the efficacy of pharma sales, and to market their products to NHS doctors and commissioners.

medConfidential recommends: Make it a requirement to report to NHS Digital (and thence to patients) how data is used by everyone; stop relying on commercial reuse contracts and the “promotion of  health” loophole in the Care Act 2014 to persist what are self-evidently marketing uses.

Manage your choice

The new ‘digital’ National Data Opt-out process cannot cope with dependant children, and assumes that all 13 year olds have mobile phones or e-mail accounts which can be accessed safely without duress. It appears as if, when the process was signed off under the Government’s Digital Service Standard, Ministers did not spare a thought for their families at all…

The entire process is overly bureaucratic and intimidating, especially when compared with the existing ‘Type-2’ opt-out process: rather than simply instructing your own GP, who already knows you, you must identify yourself to officials at a remote call centre – and may even have to send in up to four pieces of ID and documentation with a form. (Check pages 2-3 of NHS Digital’s 7-page ‘Non-Digital Proxy Opt-Out Form’ for a list of requirements.)

This feels more like an inquisition than a ‘choice’.

Given how fundamentally broken NHS Digital’s new ‘Beta’ opt-out process is, medConfidential recommends patients who have concerns use the opt-out form we’ve provided since late 2013.

We updated our form in line with recent changes and it still works for you, your dependant children and others for whom you are responsible – it also protects your GP data from uses beyond your direct care, not just your data supplied to NHS Digital.

With all that is and will be changing, medConfidential also strongly recommends you get yourself a Patient Online account, if you don’t already have one.

We provide more information about this on the ‘For patients’ section of our website.

Though it will still be some time until you can see how all of your data has been used, by which organisations and for what purposes, a Patient Online login to your GP’s online system should already allow you to see how your GP data is being used.

Where an opt out doesn’t apply

One critical question is whether patients’ opt-outs will now be honoured in the dissemination of ‘Hospital Episode Statistics’. HES comprises two-thirds of data releases from NHS Digital, most of those to commercial companies – including all of the commercial reusers. Until now, over 1.4 million patients’ wishes in this regard have been ignored.

Apparently officials believe IGARD, a body of NHS Digital’s own creation, can decide to override patients’ dissent when, in fact, the only body with a statutory basis to approve such exceptions is the Confidentiality Advisory Group (CAG) at the HRA.

Both GDPR and the UK’s new Data Protection Act clarify and extend the definition of identifiable data such that – the day before GDPR came into effect – staff at NHS Digital were ordered not to disseminate any “anonymised” patient data. Data releases were resumed the following day, but NHS Digital is still in discussions with the Information Commissioner’s Office as to what patient information can now be considered “anonymous”.

Under GDPR, this is unlikely to include HES in its current form: individual-level, lifelong hospital medical histories, where every event is dated and linked by a pseudonym.

Given a mother with two children is over 99% likely to be identifiable from her children’s birth dates alone, and given the enhanced GDPR ‘right of access’ to any data received by any customer of NHS Digital to which opt-outs have not been applied, it would seem not only unlawful but highly irresponsible for NHS Digital to keep selling what GDPR now defines as the identifiable patient data of those who have opted out.

If you – or any patient – would like to see how your data is used, and where your choices are being ignored, medConfidential recommends you visit TheySoldItAnyway.com

GDPR DAY BRIEFING: ‘Your data matters’ and NHS patients’ data, with the ‘new’ National Data Opt-Out

May 25th 2018 will start an awareness-raising programme with the public that their data matters – and what, if anything, changes as a result of patients’ increased rights under GDPR.

With regard to NHS patients’ health data:

  • A new NHS ‘National Data Opt-Out’ commences on GDPR day (May 25th);
  • NHS Digital continues to sell (i.e. disseminates under contract, on payment of a fee) patients’ data, as it has been doing for years;
  • GDPR expands the definition of ‘identifiable data’ (one reason why everyone’s privacy policies are changing);
  • Will NHS Digital ignore patient opt-outs on these newly-identifiable data releases, relying on definitions from the old Data Protection Act?
  • NHS Digital / DH refuse to ask data applicants why 98% of NHS patients’ data isn’t enough for them; while there may be legitimate reasons to override patient opt-outs, pretending new legislation does not apply to data releases (yet again) is not one of them.

Your Data Matters… but NHS Digital sells it anyway

NHS Digital still forgets about patients. Unfortunately, it sees them less as people and more as ‘lines in a database’.

NHS Digital continues to sell a product called ‘Hospital Episode Statistics’ (HES); a dataset that is not actually statistics but that rather consists of individual patients’ lifelong hospital histories, with every medical event dated and linked together by a unique identifier. As of May 24th, two-thirds of NHS Digital’s data disseminations do not respect patients’ right to object (‘opt out’) to their data being used for purposes beyond their direct care.

If you read NHS Digital’s own Data Release Registers, or view them at TheySoldItAnyway.com, [1] you can see for yourself the evidence of where data goes – and where patients’ express wishes are deemed not to matter.

After four years, and further breaches of health data, NHS Digital ignores the choices of the 1.4 million people who opted out and still sells their (and every other hospital patient’s) data for commercial reuse. Those who claim to need 100% of the data for some reason, need merely explain to a competent data release body why 98% of people’s data isn’t enough – an explanation they’re currently not even asked to provide.

GDPR clarifies that the hospital data NHS Digital continues to sell is identifiable data – so claimed exemptions (item 5) to people’s opt outs don’t apply. Especially for those who remember the dates of particular medical events in hospital, such as the birth dates of their own children, or who can read about them online. [2]

‘Could do better’

Last week, the Department for Education called a halt to the sale of the data it collects on schoolchildren [3] for the very reason the NHS continues using to justify its sale of patients’ data.

NHS Digital now has a research environment [4] which allows far higher safety for patients’ data – but the companies that don’t want the NHS to be able to see what they’re doing with the data are special pleading. It is precisely these hidden uses to which patients are most likely to object.

NHS Digital’s customers, for example, still include for-profit companies such as Harvey Walsh, an “information intermediary” that – exactly as it did in and before 2014, and despite having breached the terms of its contract since then – continues to service commercial clients including pharmaceutical companies, which use the information to promote their products to doctors.

The digital service launching for GDPR Day in fact does less than the form that’s been available on medConfidential’s website since late 2013. [5] Our GP form works immediately – if you use the new digital service, your GP won’t know about it for months.

Discussing a damning ‘report’ in the House of Commons, the chair of the Health Select Committee censured NHS Digital for its “dimmest grasp of the principles of underpinning confidentiality”. [6] The Government has agreed to raise the bar for breaching patients’ confidentiality when handing information to the Home Office; will NHS Digital now respect the choices of those patients who wish to keep the information in their medical records confidential too?

The solution to this is straightforward: DH can Direct NHS Digital to respect objections (opt-outs) in all releases of HES that CAG has not approved to have data released without patients’ objections honoured. There may be projects that require 100% of patient data; two-thirds of them do not.

The ICO has not yet updated its (non-statutory) Anonymisation Code of Practice to match GDPR, although its guidance on the GDPR definition of personal data and newer codes on subject access rights show the definitions in GDPR mean NHS Digital’s current practice does not deliver on its promises to patients.

The NHS has ignored legislative changes and harmed research projects before – see note 4 in this post. This effect is one of the main things that prompted the Wellcome Trust to create the Understanding Patient Data initiative.

But it is still (a bit) better than it was…

NHS Digital now sells less of your data than it used to; it only sends out hundreds of copies of the nation’s hospital records – ‘pseudonymised’, but containing information that GDPR recognises makes it identifiable, and therefore still personal data.

You now have the ability to make a choice for you and (after a fashion) your family that will work, in due course [7] – but NHS Digital needs to listen to Dr Wollaston, “take its responsibilities seriously, understand the ethical underpinnings and stand up for patients”, respect that patients’ data matters, and fully honour everyone’s choices.

Questions for interviewees:

  • What does the NHS’ online-only opt-out service not do on day one, that the GP-led process did last week?
  • How many steps does it take for a family to express their collective choice on how their data is used?
  • When this new digital dissent process was signed off under the Government’s Digital Service Standard, did Ministers spare a thought for their families at all?
  • Will patients’ opt-outs be honoured in the dissemination of HES under GDPR?
    • If not, will those patients who already opted out be told why not?
  • A mother with 2 children is over 99% likely to be identifiable from their children’s birth dates alone; given the enhanced GDPR ‘right of access’ to any recipient data to which opt-outs have not been applied, will NHS Digital keep selling what GDPR defines as the identifiable patient data of those who have opted out?
    • What is the burden on medical research of this choice by NHS Digital, made to placate its commercial customers?

If you or any patient would like to see how their data is used, and where their choices are being ignored, please visit TheySoldItAnyway.com

Notes for Editors

1) NHS Digital publishes its data release register as a spreadsheet but it fails to link to, e.g. its own audit reports – so medConfidential has created a more readable version that does.

2) All the information required to identify Ed Sheeran’s entire hospital history in HES appears in this BBC News article, published online on 19 May 2018: http://www.bbc.co.uk/news/uk-england-suffolk-44155784

3) ‘Sharing of school pupils’ data put on hold’, BBC News, 15 May 2018: http://www.bbc.co.uk/news/technology-44109978

4)  A ‘safe setting’, as medConfidential and others recommended in evidence to Parliament back in 2014: https://digital.nhs.uk/services/research-advisory-group/rag-news-and-case-studies/remote-data-access-environment-to-speed-up-access-to-data

5) We have updated our form to reflect the name change. See https://medconfidential.org/how-to-opt-out/

6)  https://www.theyworkforyou.com/debates/?id=2018-05-09a.746.6#g771.0

7) The National Data Opt-out should be respected by bodies across the health and care system “by 2020”.

medConfidential campaigns for confidentiality and consent in health and social care, seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Founded in January 2013, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals.

– ends –

[PRESS RELEASE] Google DeepMind deal with the Royal Free Hospital broke the law

The Information Commissioner’s Office has today ruled that the deals which gave Google DeepMind copies of 1.6 million patients’ hospital records are unlawful:

https://ico.org.uk/action-weve-taken/enforcement/royal-free-london-nhs-foundation-trust/

The ICO’s ruling determines that the deals breached four of the Data Protection principles:

https://ico.org.uk/media/action-weve-taken/undertakings/2014353/royal-free-undertaking-cover-letter-03072017.pdf

medConfidential first complained to the National Data Guardian and ICO in June 2016. [1]

In February 2017, the National Data Guardian said that copying of patients’ data to develop the Streams app was on an “inappropriate legal basis”:

http://news.sky.com/story/google-received-16-million-nhs-patients-data-on-an-inappropriate-legal-basis-10879142

Google DeepMind – the AI company developing the app – has given various contradictory quotes about its intent over time, repeatedly asserting that what it was doing was lawful. [2]

Apparently entirely coincidentally, the “Independent Reviewers” of Google DeepMind Health have a report due out, via the Science Media Centre at 00:01 this Wednesday. The timing may be a coincidence – just as it was apparently a complete coincidence that the Royal Free released a press release about how wonderful the project was, without mentioning the word Google once, 72 hours after receiving the letter from the National Data Guardian saying the data use was unlawful. [3]

On seeing the ICO’s ruling, Phil Booth, coordinator of medConfidential said:

“We look forward to Google DeepMind’s Independent Reviewers’ report on Wednesday.”

For further information or for immediate or future interview, please contact Phil Booth, coordinator of medConfidential, on 07974 230 839 or coordinator@medconfidential.org

Notes to editors

1) Details of medConfidential’s complaint are available here:

a) Timeline of events, as of 31/5/16: https://medconfidential.org/wp-content/uploads/
2016/06/medconfidential-deepmind-timeline.pdf

b) Complaint to Regulators: https://medconfidential.org/wp-content/uploads/2016/06/
medconfidential-to-regulators.pdf

c) Shortly after submission, the MHRA found that the project should have been registered with them (and wasn’t): https://techcrunch.com/2016/07/20/
deepminds-first-nhs-health-app-faces-more-regulatory-bumps/

2) This complaint has now been vindicated by the investigation, despite an extremely strong PR response from Google. Contemporary quotes from project advocates, which now ring hollow, include: [all emphasis added]

a) Mustafa Suleyman, Co-Founder at DeepMind, has said:

i) “As Googlers, we have the very best privacy and secure infrastructure for managing the most sensitive data in the world. That’s something we’re able to draw upon as we’re such a core part of Google.” [Guardian, 6/5/16]

ii) “We have, and will always, hold ourselves to the highest possible standards of patient data protection.” [Daily Mail, 4/5/16]

iii) How this came about all started with Dr Chris Laing, of the Royal Free Hospital: “We went for coffee and ended up chatting for four hours.” [BBC News Online, 19/7/16]

iv) More recently, in an interview with Mr Suleyman published on 20/3/17: “When pushed on how the public would be assured that its sensitive data was safe, Suleyman replied, “first there is the law”.” [Digital Health, 20/3/17]

b) George Freeman MP, at the time a Minister in the Department of Health: “NHS patients need to know their data will be secure and not be sold or used inappropriately, which is why we have introduced tough new measures to ensure patient confidentiality.” [Daily Mail, 4/5/16]

c) Professor Hugh Montgomery, (consultant for Google’s DeepMind project) said, on Radio 4’s PM programme on 4 May 2016:

i) “So this is standard business as usual. In this case, it was a standard information data sharing agreement with another supplier, which meets all of those levels of governance. In fact, the agreement there, or the standards of management of those data, meets the very very highest levels. It meets something called HSCIC level 3, which most hospitals trusts don’t even reach.” [Recording of audio available, see link below]

ii) “So firstly, this isn’t research. Research is governed by an entirely separate process that would require anonymisation of data and all sorts. This is data processing.”

iii) “It’s fair to say again that not only is this data at the very highest standards, and beats every standard, and more in the United Kingdom. But the data is encrypted end-to-end, and they have to, like everyone else in the health service, stick to the law.”

iv) Recording of audio available at: https://www.dropbox.com/s/cfimojgec24rlrj/
20160504­deepmind­radio4­pm.mp3?dl=1

d) Will Cavendish, now Strategy Lead for DeepMind Applied, formerly Informatics Accountable Officer at the Department of Health, said (when IAO):

…“The vital importance of trust, security, and cyber security.” … “To be honest, it used to be that not a week goes by, now it’s not a day goes by, without stories of hacking, data leaks, inadvertent data sharing. This absolutely erodes the trust that underpins the work that we do.” https://www.youtube.com/watch?v=5Ej3PRF1jUw&t=2h15m5s

e) Dr Julian Huppert, Chair and “on behalf of the Panel of Independent Reviewers for Google DeepMind Health” said in an e-mail to medConfidential on 6/7/16:

i) “one of our roles is to look in detail at how DeepMind Health uses patient data, and to confirm that it complies with the highest ethical and regulatory standards.”

ii) “We believe from what we have seen so far that DeepMind has a clear commitment to the Caldicott Principles, and that they have to date been honest in their public and private comments. We also believe they are willing to work constructively with regulators, and remain within the law.

3) https://www.royalfree.nhs.uk/news-media/news/new-app-helping-to-improve-patient-care/

 

medConfidential rapid responses to DeepMind’s statements about their “legally inappropriate” data copying

We shall update this page as more information becomes available (newer items at the top).


Tuesday 11am:

Yet more questions raised about the usage of the Streams app

The Sky News footage shows that the Streams app is still in use, displaying information from patients – their name, their date of birth, gender, and other demographic information.

Where does that information come from? How does the ‘calendar gap’ affect patient care?

There are 3 choices:

  1. It comes via the first contract that has been found to be unlawful (with the calendar gap)
  2. The second contract is being breached (which also contains the calendar gap)
  3. There is a third secret contract hidden from scrutiny

Or Google’s AI team has come up with something else legally dubious to continue to unlawfully copy 1.6 million patient records… this suggests an uber-esque approach to the law, and to safety.

What is the ‘calendar gap’?

The data Google DeepMind unlawfully copy is up until “last month”. It is currently the 16th May 2017, and at best, the data they copy will run up until 30 April 2017. On the 29 May, they will only have data until the end of April. When there’s a new month, they get an updated dataset covering the new “last month”. (It possibly takes a few days to actually happen, but you get the idea.)

Streams will help you if you were in the RFH last month. If you were there last week, however, the effect of the contract is that Streams could cause you harm – as Google’s app may prioritise longer-term patients it knows more about, over newer ones it knows less about.

Such problems are why MHRA approvals and a proper testing regimen are so important. To be absolutely clear, this failure is not endemic to Streams – the DeepMind deal with Imperial does not contain it, for example – but it appears as a dangerous symptom of the deal from DeepMind, that has been found to be unlawful.

We’ll ask the National Data Guardian for clarity later today.


Tuesday 10am:

We’ve seen this piece being discussed: the article is correct about patients who were receiving direct care – but out of the 1.6 million patients’ data it copied, DeepMind in February 2017 said it had assisted in the direct care of just “more than 26”.

So while 27 records may have had a lawful basis, 1,599,973 didn’t.

It is the 1,599,973 records that are of concern here. Similarly, while there is not necessarily any problem with testing an app, testing an app isn’t the same as providing direct care. It is a separate process that DeepMind didn’t go through, as their interviews at the time made very clear (Note 6).


Tuesday 10am:

If Google DeepMind didn’t receive the letter containing the NDG’s finding, as they have said to medConfidential (after the date on the letter), they should have a chat to the gmail team about such a convenient problem that no one else sees…

Even if that excuse was valid in the past, there are now lots of copies of the letter on the internet, evidencing their unlawful behaviour. Although Dodgy Donald from DeepMind might be in denial about even that.


Monday night:


Under the heading, ‘What we’ve learned so far’, a newly updated page on DeepMind’s website states:

There’s very low public awareness of NHS technology, and the way patient data is routinely used in the provision of care. For example, many people assume that patient records are normally stored on NHS-owned computers, when they are in fact routinely processed by third party IT providers. This confusion is compounded by the potential future use of AI technologies in the NHS.

medConfidential comment:

This response by Google shows that DeepMind has learnt nothing. There may well be lawful reasons for third party IT providers to process data for direct care for 1.6 million patients – unfortunately for Google’s AI division, developing an app is not one of them.

Google told the public as little as they thought they could get away with – and being duplicitous, they still are. And, in so doing, they are trying to force the NHS into taking the blame for their mistakes.


Regarding the investigation by Sky News into the sharing of patients’ records, which begins:

Google’s artificial intelligence arm received the personally identifying medical records of 1.6 million patients on an “inappropriate legal basis”, according to the most senior data protection adviser to the NHS.

medConfidential comment:

Google’s lawyers are expensive, but “inappropriate legal basis” is still a euphemism for unlawful.

Buried in the interview footage is a statement from a nurse that the app is still in use with patients today. Also:

“The testing for the Streams app has now concluded and it is being used at the Royal Free Hospital, Prof Powis told Sky News, under a second agreement which is not being investigated.” (Sky News article)

Unfortunately for Google, their own press release from last November states that the same data is shared under both agreements.


 

[PRESS RELEASE] Google DeepMind unlawfully copied the medical records of 1.6 million NHS patients

“A core part of Google” has been told it has no lawful basis to process 5 years’ of patient data from the Royal Free Hospital in London. [1] With no legal basis, the data must be deleted.

In May 2016, the New Scientist reported [2] that Google DeepMind had access to a huge haul of patient data, seemingly without appropriate approvals. In July 2016, the MHRA confirmed [3] that DeepMind had not received any approvals for a trial involving patients, using patient data. In November 2016, DeepMind signed a replacement contract covering exactly the same data. [5d]

The National Data Guardian has provided a view on this matter (all emphasis added): [1]

The Royal Free “…confirmed to us [NDG] that 1.6 million identifiable patient records were transferred to Google DeepMind and that implied consent for direct care was the legal basis for the data processing.

“…Streams was going through testing and therefore could not be relied upon for patient care, any role the application might have played in supporting the provision of direct care would have been limited and secondary to the purpose of the data transfer. My considered opinion therefore remains that it would not have been within the reasonable expectation of patients that their records would have been shared for this purpose.

It is unclear whether Google DeepMind has complied with the finding that it had no legal basis for processing this data; nor is it clear what it was that first attracted DeepMind executives to unlawfully copy 1.6 million people’s medical records, repeatedly insisting on direct care as the sole legal basis. [8]

medConfidential agrees with the Information Commissioner, when she said in a speech to technology companies: “I do not believe data protection law is standing in the way of your success.” She reminded her audience: “It’s not privacy or innovation – it’s privacy and innovation.” [4]

In this case, this DeepMind project turned out to be neither of those things. [9]

The National Data Guardian’s investigation has made clear – despite their claims to the contrary – that DeepMind had no legal basis for their actions in this project.

medConfidential coordinator, Phil Booth, said:

“This letter shows that Google DeepMind must know it had to delete the 1.6 million patient medical records it should never have had in the first place. There were legitimate ways for DeepMind to develop the app they wanted to sell. Instead they broke the law, and then lied to the public about it.

“Every flow of patient data in and around the NHS must be safe, consensual and transparent. Patients should know how their data is used, including for possible improvements to care using new digital tools. Such gross disregard of medical ethics by commercial interests – whose vision of ‘patient care’ reaches little further than their business plan – must never be repeated.

“While the NHS sent doctors to a meeting, DeepMind sent lawyers and trained negotiators. What this boils down to is whether Google’s AI division followed the law and told the truth; it now appears they may have done neither.

“As events this weekend have shown, it’s the number of copies of patient data that matter – encryption locks won’t reassure anyone, if the wrong people have been given the keys.”

medConfidential campaigns for confidentiality and consent in health and social care, seeking to ensure that every flow of data into, across and out of the NHS and care system is consensual, safe and transparent. Founded in January 2013, medConfidential is an independent, non-partisan organisation working with patients and medics, service users and care professionals.

For further information or for immediate or future interview, please contact Phil Booth, coordinator of medConfidential, on coordinator@medconfidential.org

Notes to editors

1) “The NDG has provided a view on this matter to assist the ICO’s investigation” was the National Data Guardian’s comment on the publication of the University of Cambridge paper, ‘Google DeepMind and healthcare in an age of algorithms’: https://link.springer.com/article/10.1007%2Fs12553-017-0179-1 and http://www.cam.ac.uk/research/news/
deepmind-royal-free-deal-is-cautionary-tale-for-healthcare-in-the-algorithmic-age

Sky News published a copy of the letter from the National Data Guardian on 15 May 2017: http://news.sky.com/story/google-received-16-million-nhs-patients-data-on-an-inappropriate-legal-basis-10879142

2) medConfidential raised a complaint [4] to the ICO following reports in the New Scientist, and follow-ups elsewhere, about secretive data use by Google DeepMind:

a) New Scientist, 29/4/16: https://www.newscientist.com/article/2086454-
revealed-google-ai-has-access-to-huge-haul-of-nhs-patient-data/

b) New Scientist, 13/5/16: https://www.newscientist.com/article/2088056-did-
googles-nhs-patient-data-deal-need-ethical-approval/

c) Daily Mail, 4/5/16: http://www.dailymail.co.uk/news/article-3573286/NHS-
trust-handed-private-patient-details-Google-says-implied-permission-emerges-hospital-talks-internet-giant.html

d) BBC, 19/7/16: http://www.bbc.co.uk/news/technology-36783521

e) Guardian, 6/5/16 (note 9 May & 25 July updates at the bottom of the article): https://www.theguardian.com/technology/2016/may/06/deepmind-best-privacy-infrastructure-handling-nhs-data-says-co-founder

3) “DeepMind is currently working with the MHRA to ensure that the device complies with all relevant medical device legislation before it is placed on the market” – TechCrunch, 20/7/17: https://techcrunch.com/2016/07/20/deepminds-first-nhs-health-app-faces-more-regulatory-bumps/

4) Information Commissioner’s speech, ‘Transparency, trust and progressive data protection’, 29 September 2016: https://ico.org.uk/about-the-ico/news-and-events/news-and-blogs/
2016/09/transparency-trust-and-progressive-data-protection/

5) medConfidential’s complaint is available here:

a) Timeline of events, as of 31/5/16: https://medconfidential.org/wp-content/uploads/
2016/06/medconfidential-deepmind-timeline.pdf

b) Complaint to Regulators: https://medconfidential.org/wp-content/uploads/2016/06/
medconfidential-to-regulators.pdf

c) Shortly after submission, the MHRA found that the project should have been registered with them (and wasn’t): https://techcrunch.com/2016/07/20/deepminds-first-nhs-health-app-faces-more-regulatory-bumps/

d) The end of the first ‘Note to editors’ in a press release from the Royal Free Hospital on 22 November 2016 clearly states: “The new agreement does not change the number of patients whose data will be processed by Streams”: https://www.royalfree.nhs.uk/news-media/news/nhs-and-technology-leaders-agree-groundbreaking-partnership-to-improve-safe/

6) Claims by the New Scientist have been vindicated by the investigation, despite an extremely strong PR response from Google. Contemporary quotes from project advocates, which now ring hollow, include: [all emphasis added]

a) Mustafa Suleyman, Co-Founder at DeepMind, has said:

i) “As Googlers, we have the very best privacy and secure infrastructure for managing the most sensitive data in the world. That’s something we’re able to draw upon as we’re such a core part of Google.” [Guardian, 6/5/16]

ii) “We have, and will always, hold ourselves to the highest possible standards of patient data protection.” [Daily Mail, 4/5/16]

iii) How this came about all started with Dr Chris Laing, of the Royal Free Hospital: “We went for coffee and ended up chatting for four hours.” [BBC News Online, 19/7/16]

iv) More recently, in an interview with Mr Suleyman published on 20/3/17: “When pushed on how the public would be assured that its sensitive data was safe, Suleyman replied, “first there is the law”.” [Digital Health, 20/3/17]

b) George Freeman MP, at the time a Minister in the Department of Health: “NHS patients need to know their data will be secure and not be sold or used inappropriately, which is why we have introduced tough new measures to ensure patient confidentiality.” [Daily Mail, 4/5/16]

c) Professor Hugh Montgomery, (consultant for Google’s DeepMind project) said, on Radio 4’s PM programme on 4 May 2016:

i) “So this is standard business as usual. In this case, it was a standard information data sharing agreement with another supplier, which meets all of those levels of governance. In fact, the agreement there, or the standards of management of those data, meets the very very highest levels. It meets something called HSCIC level 3, which most hospitals trusts don’t even reach.” [Recording of audio available, see link below]

ii) “So firstly, this isn’t research. Research is governed by an entirely separate process that would require anonymisation of data and all sorts. This is data processing.”

iii) “It’s fair to say again that not only is this data at the very highest standards, and beats every standard, and more in the United Kingdom. But the data is encrypted end-to-end, and they have to, like everyone else in the health service, stick to the law.”

iv) Recording of audio available at: https://www.dropbox.com/s/cfimojgec24rlrj/
20160504­deepmind­radio4­pm.mp3?dl=1

d) Will Cavendish, now Strategy Lead for DeepMind Applied, formerly Informatics Accountable Officer at the Department of Health, said (when IAO):

i) …“The vital importance of trust, security, and cyber security.” … “To be honest, it used to be that not a week goes by, now it’s not a day goes by, without stories of hacking, data leaks, inadvertent data sharing. This absolutely erodes the trust that underpins the work that we do.” https://www.youtube.com/watch?v=5Ej3PRF1jUw&t=2h15m5s

e) Dr Julian Huppert, Chair and “on behalf of the Panel of Independent Reviewers for Google DeepMind Health” said in an e-mail to medConfidential on 6/7/16:

i) “one of our roles is to look in detail at how DeepMind Health uses patient data, and to confirm that it complies with the highest ethical and regulatory standards.”

ii) “We believe from what we have seen so far that DeepMind has a clear commitment to the Caldicott Principles, and that they have to date been honest in their public and private comments. We also believe they are willing to work constructively with regulators, and remain within the law.

7) The claim to reach “HSCIC level 3” was a self-assessment by DeepMind, which was revoked upon examination. [See the 25 July update to this Guardian article].

8) In a controversial press release by the hospital on 24 February 2017, the word “Google” did not appear once, despite point 6 (a)(i) above: https://www.royalfree.nhs.uk/news-media/
news/new-app-helping-to-improve-patient-care/
and a subsequent Guardian article on 9 March 2017, from a press release by Google DeepMind, which explicitly attributes actions to Google DeepMind: https://www.theguardian.com/technology/2017/mar/09/google-deepmind-health-records-tracking-blockchain-nhs-hospitals

9) “ “With health data, and government acquired health data, we need to be sure we aren’t, in effect, giving oxygen away for free to a private company that will start to sell it back to us,” says Azeem Azhar, who writes the popular Exponential View newsletter…” – Quartz, 17/3/17: https://qz.com/934137/googles-goog-deepmind-got-too-much-health-data-from-
britains-nhs-research-paper-says/

– ends –

medConfidential comment on “NHS” cyberincident

Regarding the ongoing [time of writing: 18:30, 12/5/17] international cybersecurity incident, currently affecting – amongst many others – a number of NHS hospitals and GP practices.

Phil Booth, coordinator of medConfidential said:

“medConfidential has confidence in clinicians continuing to treat their patients, and in GCHQ’s incident response – as has been demonstrated in previous similar incidents.  Unfortunately, we also fully expect NHS England’s analogue administrators’ tailspin to continue to learn as little from this event as from any other in the real world.”

Notes to editors

1) Dame Fiona Caldicott’s ‘Review of Data Security, Consent and Opt-Outs’, published in June 2016, made important points about NHS cybersecurity. As of the snap General Election, the Government had yet to publish its response to the Review: https://www.gov.uk/government/publications/review-of-data-security-consent-and-opt-outs

2) NHS Digital has run a programme called CareCERT since September 2015, partnering with agencies such as including CERT-UK, CESG and CPNI. One of CareCERT’s core functions is “national cyber security incident management”: http://content.digital.nhs.uk/carecert

3) At the time of writing, this does not appear to be a ‘NHS-only’ incident; there is evidence of similar issues arising in Telefonica, in Spain: e.g. https://www.bleepingcomputer.com/news/security/telefonica-tells-employees-to-shut-down-computers-amid-massive-ransomware-outbreak/ & https://www.thestreet.com/story/14132953/1/britain-s-national-health-service-suffers-cyber-attack-spain-s-telefonica-hit-in-similar-incident.html

4) At the time of writing, the vulnerability appears to be one used by the CIA and disclosed via wikileaks in March 2017. Microsoft shipped an emergency patch at that point: https://technet.microsoft.com/en-us/library/security/ms17-010.aspx Serious questions need to be asked of those responsible for maintaining Windows-based IT systems, who failed to patch their servers for two months.

Patients’ Data in the Party Manifestos

What medConfidential will be looking for in every party’s Manifesto is rather simple:

    Will patients know how their medical records have been used?

A straightforward “Yes, they will” or “No, they will not” will suffice.

Every flow of data into, across and out of the NHS and care system should be consensual, safe, and transparent – there need be no conflict between good research, good ethics and good medical care.

We shall provide more detail on how this relates to current issues like Genomics and AI in due course – but the question to which there must be a clear answer, for whatever the future brings is: Will you know how data about you is used?

We would like the Government to honour its commitment to a statutory National Data Guardian; to closing the commercial re-use loophole, putting promised safeguards and sanctions in place, and implementing transparency on all data flows across the health and social care systems – but we understand these are details that may not make the cut for a short manifesto.

Given all that has happened, would you trust any party that fails to commit to you knowing how your medical records have been used?


Related pieces:

On what principles will data be used in the Single Government Department?

Whitehall proceeds step-wise, and ever more rapidly, towards an end state of a “Single Government Department”. This is Sir Humphrey’s decades-old vision of “Joined-up Government”, predicated upon Government doing whatever the hell it likes with your data, wherever and however it gets it, in flagrant disregard of Data Protection and Human Rights, Articles 8 and 14 (at least). User needs or departmental needs?

In a world where there’s a single Government (and government) data controller – the Data Controller in Chief; the Prime Minister, the final arbiter – will a single Department’s policies, practices and prejudices determine the list of Government policies?

We don’t see how it doesn’t.

It may be useful to begin with an NHS analogy. It’s a gross simplification, but it carries the necessary meaning.

There are multiple hospitals in Manchester – Royal Manchester Children’s Hospital, Manchester Royal Infirmary, and St Mary’s – all on the same site, with interconnected modern buildings, all built at the same time. Why are there three hospitals? Because when the new buildings were constructed, and everything was consolidated on one site, though treating them as a single hospital would seem most sensible, that would (to many people) effectively be “closing two hospitals”. Hence, there are three.

What about Government departments?

In a Britain with a single government department, what is currently the Home Office – with its particular approach (covered elsewhere) – will go on the rampage across all areas of everything.

For how will weaker policy goals be defended against stronger ones? “It’s a matter of national security, don’t you know…”

Clause 38 of the Digital Economy Bill “solves” this problem by simply ignoring it – those with the highest bureaucratic power will win the fight; we’ve seen this already with the Home Office demanding the names and addresses (p16) of patients – and it’s quite clear they’d have grabbed everything if they’d wanted to.

In this context, with the Digital Strategy of DCMS, and Cabinet Office’s warmed-over Government Transformation Strategy in play, what should happen to make the world they’re trying to build safe?

The greatest concerns must be with the Transformation Strategy; the current “ethics framework” suggested by GDS (the part of Cabinet Office responsible for writing the Strategy) is so flawed, for example, that it suggests a Privacy Impact Assessment can fit on a single sheet of A4 – the self-same strategy used to justify care.data, relying on NHS England’s public statements. Thus far, the country has been saved from a systemic collapse in trust by the fact that this “ethics framework” isn’t actually used by departments.

So what’s the alternative? A citizen view of Government.

Government insists it should be able to copy our data – whatever it wants, wherever and whenever it likes – including to its commercial partners, e.g. Google (or rather, Alphabet) DeepMind and Palantir, for whatever policy whim catches the interest of any particular official. Proportionality and public acceptance are irrelevant; these are not what the civil service is set up to do.

As we saw with DeepMind at the Royal Free Hospital, one person with power can torpedo years of careful and diligent work in order to meet their own short-term, narrow perspective, self-interested goals.

The single Government department makes this worse, if left unaddressed. What should replace it is a citizen view of Government.

This conversation has never been had. The discussions that have been facilitated were designed to get to the pre-conceived end state of the Cabinet Office. As such, the answer was given and civil society time was wasted on a ‘debate’ that was entirely pointless; any wider opportunity to improve the use of data in Government through the Digital Economy Bill was lost.

As an example, well-defined APIs might work for departments – but if departmental silos weaken (as is the explicit goal: “to remove barriers to data sharing”) then things begins to fail. Citizens should not have to rely on how Government talks to itself.

The start of the conversation has to be with complete transparency to citizens – with the likes of Verify and public bodies being accountable to the citizens they work for. Citizens can now be shown what data is required for their transactions, and from where it will be accessed, and why. Operational decisions should inform democratic debates, both by policy makers and citizens who wish to engage in democratic debates about the services that affect them.

Civil servants all work for the Crown and not the public – whatever ‘flavour’ of Government is in power – and this may be a tension that needs consideration. What happens when the political will meets the public won’t? How is trust in institutions maintained?

Because without action, continued secrecy and the drip drip of cockup will undermine all trust.

This works in practice

Fortunately, some NHS GPSoC IT Providers (the data processors who provide IT systems to your GP) have taken the lead in fixing the systems from within the system. How many decades will it take Whitehall to catch up?

We have already demonstrated what this looks like – with Verify and other tools.

Rather than a “single government department”, the principle should be a “Citizen View of Government” – where every service a citizen has touched can be seen, with accountability for how they used data and why. This would make Government accountable to the citizen, as it should be – without the citizen having to understand the intricacies of how Government works.

In a “Citizen View” world, whether Government is one Department or many doesn’t matter as much. If civil servants want to justify access to data, they can – but they must be aware that citizens will be told what data and why, and might become unhappy about it if the reasons aren’t just.

Any Government that fails tell its citizens what it is doing and why, or which doesn’t really want them to know, will not be wanted in return – as the EU discovered with Brexit. This is what the open policy making process should have prepared the groundwork for; the price of that failure keeps going up as digital continues its march.

Unless we wish to treat data about human beings with less care than we treat the data about carcasses in our food supply chain, ‘Globalisation 2.0’ will be based on registers and code – determining risk and eligibility for consumers and for regulators. This simply does not square with a world of copying data; it can only work in a world of APIs to data where there is a lawful, published case for each access, grounded in fundamental accountability to citizens about their data.

It is obvious that data about the food we eat should not be locked in a filing cabinet in Whitehall. It should be equally obvious that “taking back control” shouldn’t mean giving every civil servant a copy of all the data on every citizen.


Related pieces:

The Home Office: Secretive, Invasive, and Nasty

In various guises, those who coordinate medConfidential have been dealing with the effects of Home Office missteps for what now in total amounts to decades.

Liberty Human Rights Awards 2010

Liberty Human Rights Awards 2010

Here is some of what we have learnt:

Home Office is the part of Government that must confront and ‘deal with’ the absolute worst in the world: murder, rape, terrorism, paedophilia – the stuff no-one really wants to have to know about; things from which civilised people prefer to turn their eyes. There are obvious – and legitimate – reasons that some of what the Home Office does must be confidential or classified.

The people who we task with dealing with these terrible issues deserve to work in a culture of compassion and competence, with solid foundations in Justice – the current Home Office has none of these.

Secret: Hiding errors in a file marked Secret harms the public good.

As can happen with bureaucracies more generally, the hint of secrecy at Home Office has spread into an all-encompassing security blanket around any information that might be be helpful to an informed debate in a democracy.

Treating information about every offence and misdemeanour as if they were the worst, keeping arbitrary secrets, and hiding your actions while telling others they must simply trust that “It’s for your own good” are the actions of someone who has lost perspective. Lost a sense of proportion. And lost the ability to discriminate, except in the prejudicial sense.

The examples of this are countless – from Ministers’ refrain of “trust us” about the ID scheme to “We know but we can’t tell you” about the Communications Data Bill; from petty refusals to extreme resistance to simply ignoring requests for information; and as evidenced by the secret ‘National Back Office’ in the NHS, only exposed in 2014, when Sir Nick Partridge reviewed what happened in the building where the previous-but-one Home Office-administered ID card scheme ended up.

Worse than that, on getting information via a backdoor into people’s medical records, the Home Office wrote in secret to people’s doctors, telling them to deny treatment.

Invasive: No consideration of innocence, or the consequences of action

The political culture pervading the Home Office has led to an organisation which cannot consider side-effects.

It sent round “Go home” vans because they might contribute to a “hostile environment” for illegal immigrants, without any regard to the effects of that hostile environment on innocent parties.

And it’s lost the ability to discriminate: to Home Office, everything it looks at is a crime – or a potential crime – so it is prejudicial towards everyone.

In being unable to discriminate between ‘crimes’ – including thoughtcrime, and perfectly normal behaviour, such as trying to keep your personal communications private – Home Office discriminates wildly and inappropriately against whole classes of people, and individuals who have in fact done nothing (or very little) wrong.

And, in pursuit of its obsessions, it considers nowhere, and nothing, sacred (Q78).

If it will not respect the boundary of the confidential relationship between you and your doctor, where is it that you believe the Home Office will not go?

In this world view, the entire country gets treated the way the Home Office treats illegal immigrants (which it claims is “respectful”!) and – after many attempts, including a RIP Act that for years emboldened nasty, technocratic petty-mindedness down to the local council level – it has finally got its Investigatory Powers Act, so it can snoop on all our communications data.

Nasty: Fear breeds paranoia, and suspicion is contagious

Bullies are fearful. They don’t always appear to be – especially when they get themselves a gang. But you can tell bullies by the way they pick on people, and who they pick on; the weak, the odd, the vulnerable. People who can’t put up a fight.

The Home Office delivers little itself; it cannot act directly in many of the areas for which it is responsible. For these areas of concern, it develops policy, dispenses budgets for various programmes, commissions systems, lobbies for legislation, and other things – but it assumes everything will fail, which leads to suggestions like a 15 foot high concrete wall around Parliament: “Operation Fortress Commons”.

But the few things it can do corrupt everything. It tries to turn everyone it leans on in every part of the public services into a border guard, or a snitch. Demanding the Met hand over details of those who witness crimes makes everyone less safe – if you are the victim of a crime, you want those who know something to share what they know with the police, without fear that it may be used against them. In this case, the hostile environment is hostile against innocent victims of street crime, because the Home Office has harmful priorities.

There are countless examples of each of these, which will appear over the course of the campaign. Some of them will even come from us…

The Home Office has been responsible for a string of high profile, national embarrassments in recent years. Flawed decisions by Home Office led to national humiliation at the opening of Terminal 5 – ever wondered why the baggage handlers couldn’t get to work? The shameful disarray of the G4S contract for the Olympic Games, from which Home Office had to be rescued by the military. The collapse of many criminal trials because policy at SOCA and NCA was simply unlawful. The harm to the UK’s economy, and international reputation, from the wrongful deportation of 48,000 students – because the Home Office panicked after watching a TV programme. And the harm to public safety and public confidence.

Shorn of Justice, the Home Office has lost touch with humanity, proportion, and the fundamentally positive spirit of the Britain. Human Rights are pretty much all that protects you from excesses or mistakes by the Home Office.

How does this relate to the NHS and privacy?

The greatest hazard in this election comes not to/from Brexit, but rather the deeper, more insidious threat to the autonomy of every citizen from the State. It forgets the worldview that created the NHS: that no matter what the world’s darkness, there will always be people there helping.

In a Brexit world, the Home Office worldview offers the NHS just three choices: be nasty to ‘brown people’; be nasty to everyone; or ID cards. These are the only choices its worldview can see, while the perspective of the NHS is quite simple; healthcare, free at the point of use, for all those in need. Without discrimination.


Related pieces:

medConfidential Bulletin, 21st April 2017

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.

What’s happened? General Election!

What medConfidential will be looking for in every party’s Manifesto is rather simple:

    Will patients know how their medical records have been used?

A straightforward “Yes, they will” or “No, they will not” will suffice.

Every flow of data into, across and out of the NHS and care system should be consensual, safe, and transparent – there need be no conflict between good research, good ethics and good medical care.

We shall provide more detail on how this relates to current issues like Genomics and AI in due course – but the question to which there must be a clear answer, for whatever the future brings is: Will you know how data about you is used?

Update on DPA Section 10 notices

Last December, NHS Digital and Public Health England (PHE) were sent hundreds of Section 10 Data Protection Act notices by patients who had opted out, insisting that their data should not be sold – even through a loophole.

Though there were some ‘boilerplate’ responses, both bodies effectively ignored every single one of those notices. Patients’ data continues to be sold for commercial re-use, and further problems have emerged:

  • PHE considers itself exempt from existing opt-outs; will it make you opt out again?
  • What about the NHS? Will the Government’s response to Caldicott 3 force yet another opt-out?

It is understood the Caldicott Consent Model should include overrides – and some exceptions, where required by law – but this should not be at the whim of Public Health England, which still copies patient data to companies in secret. PHE said it was becoming transparent, but its own actions give lie to this and still it demands more data.

If you want to know public health information about your area, PHE thinks you should use a site called “fingertips” – which gives you a mountain of statistics, a trowel, and suggests you start digging. If you want to see the biggest public health issues in your area, you may want to try this list instead.

Speaking of digging…

Questions for the elections; what is your lived experience of the NHS?

With STPs and financial devolution on the way, it’s the candidates who are elected in your area who’ll be making decisions that will impact directly on your, your family’s and your community’s health and care services – and the exploitation (or not) of your medical records.

In the run-up to the elections, all you need do is ask the people who canvas you some straightforward questions, share some of what you know from your own experience, and put up a poster to encourage your neighbours to do the same. Here are our suggestions:

  • Does [the candidate] agree that everyone should be told how the council and NHS use their data?
  • Given 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?
  • What are [the candidate]’s priorities for reducing problems that put a strain on your community’s NHS and care services?

If you get answers, please do post them on facebook and in other appropriate forums, so others can see them too.

Phil Booth & Sam Smith
21st April 2017