In practice, the ICO has a very simple test for fair processing:

Do data subjects know (i.e. have they been they fairly informed) what (processing of their data) you’re intending to do?

That’s it – is the organisation being completely honest?

If yes, that’s fair processing.

If no, that’s not “fair processing”.

It’s that simple. It’s not a high bar, and it’s not a complex bar.

If you end up in trouble, it’s because of surprises – you weren’t completely honest with the data subjects about what you were going to do.

With regard to fair processing, the ICO doesn’t make a distinction as to whether or not you should do something; it solely looks at whether you said you would. The ICO is often seen as facilitating data flows, because this test isn’t what people often seem to think it is.

The ICO considers itself to have one job in this regard, defined by the Data Protection Act, and that human rights are the remit of a Court. If someone is honest and informs you about using your data to breach your human rights, the ICO believes this is not a consideration for the data protection authorities. This may be an incomplete or incorrect reading of the law, but the current ICO has made its consideration.

In many controversial cases, organisations themselves – including the Government, Ministers, the NHS – all add additional requirements. These are not data protection constraints, they are moral constraints, they’re other legal constraints or they’re ‘ministerial gifts’ (e.g. the care.data opt out).

Remember, it’s only fair processing so long as what you tell people you’ll do matches what you actually do. (You can tell them you’ll do something and not do it – that’s still fair processing.)

When you want to do something new with data, if that wasn’t in the old rules, you need to tell people about the new rules. It is here that NHS England’s various data grabs have run into trouble, mainly because they don’t want to tell people quite what it is they want to do.

So in short, be completely honest.

No wonder the political machinations in the Department of Health and NHS England keep screwing it up…

P.S. Complaints about “fair processing” basically boil down to, “we don’t want to be honest with you”. Any fines simply show that you weren’t honest; one reason organisations get fined for losing data is because they’ve said that they won’t. If they didn’t say that, then losing your data mightn’t be a breach in those terms – but then no-one would do business with them. Which is why such promises get made in the first place.

NHS England and Rewired State recently ran a competition with a £30k prize fund for apps around obesity

We didn’t win a prize (they get announced next week), but http://simonsayswalk.com/ was our submission. 

“I know I should really go for a walk 3 times a week, but I’m just too busy…”

‘Middle-aged, managerial-class, overweight white man’ – let’s call him ‘David’ – knows he’s at risk of health complications from being overweight, he just doesn’t do anything about it for a host of legitimate reasons; he has meetings… he has dinners… he has an important job that puts many constraints on his time… he has a family with caring responsibilities…  (While we use a male example above, SimonSays:Walk is gender-indifferent)

This is not primarily an information problem amongst those who, over time, are likely to make disproportionate use of NHS services. SimonSays:Walk is designed to help people make a commitment; to schedule time to go for a walk.

Quite simply, SimonSays:Walk provides a ‘button’ people can press to add such a commitment to the calendar / electronic diary they already use (or which their personal assistant manages for them) on their smartphone, PC or tablet. Having made such a commitment, by reminding them and providing them with a simple map, SimonSays:Walk assists someone to get into the habit of taking regular walks.

The regular dates begin after a delayed start: the first appointment to walk will be scheduled two weeks ahead of the point at which someone first chooses to make a commitment. This will help make the decision to commit a bit easier – a decision with consequences two weeks in the future may be easier to make than one that imposes more immediate demands (this is, of course, testable) – and should help ease any diary issues / conflicts. It is also logical, on the basis that if someone decided to go for a walk today, a diary app wouldn’t be particularly helpful!

The use of the person’s existing electronic diary means appointments can be moved if necessary, and means that other people (e.g. personal assistant) with access to the person’s dairy can take account of other considerations and, hopefully, assist the individual to pick up the habit.

SimonSays:Walk is also ‘infinitely forgiving’; if you didn’t go for a walk today, there’s no shame other than that you impose on yourself – you can just go next time. (Someone else with access to your diary may be less forgiving, however!)

SimonSays:Walk does not aim to solve the whole problem of obesity; different people need different things. This tool is designed for those who are busy, and who use some form of electronic diary – though one need not necessarily be busy to make use of it.

In terms of functionality, if you are within a mile or so of an NHS pharmacy – which SimonSays:Walk  determines using open data from the NHS via data.gov.uk – it will suggest you may want to walk past it. We chose this particular function for a number of reasons: firstly, because NHS pharmacies tend to already have helpful information on display in their street-facing windows; and secondly, because those windows offer a low cost way to provide positive reinforcement for individuals who have engaged with the app, and also to promote (the goal of) SimonSaysWalk and the benefits of regular physical exercise more generally.

If the person is not that close to a pharmacy, there are probably nicer walks available. SimonSays:Walk suggests a direction and ‘walk radius’, not a specific route. Suggesting people walk through an industrial estate might not be sensible, or wise. In any case, it better for individuals – who are likely to know their immediate area better than an online tool – to make those decisions for themselves.

The simple premise of SimonSays:Walk is that it matters far less where you are, and exactly where you walk, than that you are sitting in a chair all day long. Any walk is better than no walk; this is about making it happen. When it’s in your diary that you use every day, you can make a commitment that it actually happens.

SimonSays:Walk adopts a privacy-preserving model – and using information and processes that people already use day-to-day – and tries to work with people’s lives, rather than trying to impose a major life change on them.

Once people become used to walking regularly, non-confidential phone calls, etc. could be done via mobile while going for a walk – or meetings could be scheduled about 25 minutes walk apart. We appreciate that in the UK, this would probably work better in the summer months.

If there is no GPS information available, e.g. from a non-location aware desktop browser, the map is centered on the pavement East of the Cenotaph, with a generic message about a walk.

People already have plenty of information that being overweight is bad for them; this is a tool to help them do something about it.

http://simonsayswalk.com/

No newsletter this month, so we thought we’d do a quick round-up on the blog of some things you may wish to read, “chillaxing” on a beach.

What difference does 10% make?

Dribs and drabs of information about care.data are beginning to leak out. Many may have missed the Minister for care.data, George Freeman MP, give a very carefully couched answer to Parliament about the number of patients who have opted out.

As you may recall, the last time anyone said anything to Parliament directly was when Kingsley Manning suggested “about a hundred” patients have been affected by NHS England’s ‘Type 2’ cockup. His follow-up written answer “actually it’s more like 700,000” was somewhat buried by being published in the run-up to the Election.

Mr Freeman, however, had the more difficult task of announcing a much bigger number – which he did by the time-honoured tradition of hiding behind percentages and ranges. Even so, his answer meant we had to update our own estimate to between 950,000 and 1.6 million.

We had increased our estimate based on an extraordinarily detailed series of FOI requests by Dr Neil Bhatia, which he very kindly shared with us (and others). Dr Bhatia’s figures showed that – while what Mr Freeman told Parliament was true in as far as it went – the picture was somewhat more complex, possibly even alarming.

Mr Freeman limited his comments to a range which he said “the majority fall between 0.5 – 2.5%” opt outs. Dr Bhatia’s figures show quite a number of practices with opt outs in the 4 – 6% range, running as high as 12% or even 14% in a handful of practices. And don’t forget, these are the pathfinders – the volunteers, the supposedly keen practices. No one has detailed figures from any urban areas yet, as NHS England is still struggling to recruit practices in Leeds.

Talking more about care.data (not just on a beach)

One thing that does need to massively improve is the way that care.data is talked about.

NHS England is still far too fond of hiding its dodgy commercial re-use ambitions behind the figleaf of research. At the recent “son of care.data” events – officially, NIB ‘Work Stream’ 2.2 – the only secondary use that NHS England really wanted to talk about was research; offering very little to those asking “What about the other uses?”, such as commissioning.

If you happen to be planning a discussion of care.data after the holidays, here are some thoughts we hope are useful.

There are some sensible discussions going on, and a number of positive developments we hope will be announced in the months immediately following the summer – not least HSCIC’s ‘fix’ for the yet-to-be honoured ‘Type 2’ (9Nu4) opt outs. There are several legal instruments in the pipeline: new Directions for the care.data pathfinders and patient objections; CAG Regulations establishing promised safeguards and sanctions, and closing “the promotion of health” loophole; and hopefully, “at the earliest opportunity”, primary legislation to put the National Data Guardian on a statutory footing.

Let’s hope NHS England reflects over the summer on how little its ‘head down, keep people in the dark and keep rolling at all costs’ approach has achieved over the past 18 months – except further eroding public trust – and starts meeting some of the many promises it has made.

NHS Improvement

You may have missed the quiet announcement, just before Jeremy Hunt went off on his holidays, that DH’s troubled arm’s-length body, Monitor, and the NHS “Trust Development Agency” (that’s Trust as in NHS Trusts) are to merge, under the new brand “NHS Improvement”.

When it comes to Monitor’s worldview on data, things can only get better; it seems to have been taking care.data as a handbook, rather than as a salutary lesson. So the new NHS Improvement may provide a springboard for a huge leap forward. Or backwards, depending on crucial choices that must be made. Will they follow NHS England’s past-its-sell-by-date worldview, or the best thinking and actions of the reformed and reforming HSCIC – and what about patients? We’ve pondered the potential…

Beyond this new merger, there are other areas that could be improved – not least the introduction of a data incident protocol aiming to provide patients in data crises with knowledge rather than media management, and to aspire to something more ethical than mere DPA-compliance. Also better consensual, safe and transparent sharing of medical records along care pathways, for patients’ direct care.

Use of data

With regard to the proper use of patient data, we’re still awaiting more details of what the high street pharmacies are looking to do with the Summary Care Record. Three were asked, two denied they were planning to abuse it. And our ‘old friends’ at PA Consulting have come out in their defence. (You may remember PA Consulting as the ones who made money uploading 25 years’-worth of our hospital data to Google, not to mention previous financial benefits from servicing the old Home Office ID cards scheme.)

One bright idea in the run-up to the Election by someone who probably hoped they’d never be responsible for implementing it – think mistakes like the Poll Tax – was to use people’s medical histories to deny them benefits. As we’ve discovered, sometimes “high level” political ideas interact badly on the ground; we wrote to David Cameron recently about just such an initiative, done in his name.

The Government gave the ‘employment problem’ to an Independent Review Panel, which currently has a consultation out. If you have a free moment, you may wish to respond to Question 7 (amongst others).

medConfidential is concerned that as DWP and HMRC are reengineered over the next 5 years, there’ll not only be more and more temptation, but a now practical ability to do similar things.

We would like to think that DWP and HMRC will take a decision that someone in the NHS is capable, though it seems to refuse to accept those same decisions when the professional outcome goes the other way. This type of discrepancy forms the basis for our draft submission to the Comprehensive Spending Review – if you have any comments, please e-mail them to coordinator@medconfidential.org

And finally…

In September, we’ll find out what happened when the deeply flawed Directions for the care.data pathfinders were considered by the HSCIC Board. If there were to be further delay, all the dates that NHS England has been announcing for the last month or more will have been misleading. Let’s hope NHS England didn’t screw anything up due to lack of consultation…

Phil’s on holiday for the next few weeks, so Sam’s really hoping NHS England doesn’t do anything catastrophically stupid before September. For that matter, NHS England probably is too…

We hope you enjoy your summer!
Sam and Phil

The status quo of NHS  data collection could be described as “Collect it all yourself; trust no-one else”. This is clearly unsustainable: care.data may have been the straw that almost broke the camel’s back; the Prime Minister’s Challenge Fund just tossed some steel girders on top. Poor camel.

With the merger of the NHS Trust Development Authority (TDA) and Monitor under a new name, “NHS Improvement”, there may be an opportunity to begin to address some serious data shortcomings – and some persistent category errors. Monitor was supposed to act as a Government “stick”; the TDA was supposed to be an NHS “carrot” – but, as with so many bureaucracies, the left hand seemed not to know what the right hand was doing, so the stick ruled and very little productive got done.

From documents medConfidential has seen, Monitor’s approach to data seems to have adopted care.data as a handbook, rather than recognising the scheme for the “fiasco” it has so clearly become. Problems that emerged with the “pioneer” in Southend could have been as much down to flawed advice propagated by Monitor as it was the result of NHS England’s inadequate and inaccurate guidance.

We had expected the Government to have responded to its “Accredited Safe Havens” consultation from last summer by now. That it hasn’t speaks volumes. That some of the “pioneers” and “vanguards” reflect a backward-looking data worldview still prevalent in parts of DH gives cause for concern. It’s clearly not just care.data that’s infecting the thinking, and in real danger of further damaging patient – and professional – trust.

In the forthcoming consultation on the powers and remit of the National Data Guardian, we hope the Department gathers views on NDG having to be consulted on every use of NHS England’s and other statutory bodies’ powers to require data. While NHS Improvement should certainly not be given powers to require data (HSCIC doesn’t have such powers either), it could be a place where conversations can be had between the various stakeholders – care providers, commissioners and the Department of Health – about the statistics required to firstly measure, and then “improve” a particular area.

This should not be about measuring only what it is you want to manage, but be about measuring the things that matter. Not least because, as has been repeatedly been shown, simple measures can lead to detrimental care when ‘gamed’ by those in the system.

Learning the lessons of care.data – though some are still lagging behind – such datasets must always and exclusively be aggregated datasets; published statistics where not only the figures but the methodology are published for all to read. (Some datasets where the detail contains small numbers may need to remain unpublished, available only in a tightly-controlled safe setting.) The public must be able to see, and debate, the specification of any dataset that will be used for strategic decision making.

While the research process involved in the design and testing of these datasets may need access to consented individual-level data, such as should be possible with data in the new Secure Data Facility, the use of aggregated counts as the basis for decisions, rather than individual-level detail would remove many of the problems NHS England still claims will befall GP practices where 12% or more of the patients have already opted out of its ill-conceived, zombie data grab.

NHS Improvement could be a good place for these conversations to take place, if it steps up several gears. NHS England could even have a seat at the table – so long as NHS Improvement convenes and manages the process of defining these new aggregated measurement datasets, of which, given the dearth of them, there will probably need to be a fair few.

The process could be designed to ensure that care providers can have measures they feel accurately reflect good care, NHS England gets the evidence base it needs to justify decisions, and HSCIC can focus on the vital implementation issues – such as feasibility, assurance and process.

Preventing a repeat of the Prime Minister’s Challenge Fund debacle would appear to require such a venue; NHS England has proved itself institutionally incapable of being a trusted broker, and HSCIC has other roles. A correctly constituted NHS Improvement, appropriately staffed and resourced, could provide a venue to help ensure the outcome: “High quality care for all, now and for future generations”.

It could also help with another problem

In much the same way as the DWP requires health assessments by its own staff, rather than trusting the assessments of NHS care providers, and the way HMRC trusts nothing it didn’t confirm itself, an underlying cause of many problems in the NHS is quite easy to define: NHS bodies simply don’t trust other NHS bodies.

This is why bean counters in a CCG want detailed medical records of all “high cost” patients. Or indeed believe, in spite of Caldicott2, they should have access to individual-level medical records.

Multiple interlocking but discrete datasets, properly designed and produced as above, can show up the various “tricks” that get used to move people out of one column into another – “massaging” the figures – a practice that certainly should be measured. And acted upon by someone independent.

If an NHS organisation believes statistics being provided are fraudulent, then that’s a question for NHS Protect, rather than CCGs thinking they can investigate themselves. Integrity on process can be provided by HSCIC working on collation and process (SUS and GPES already do this for hospitals and GPs).

For NHS Improvement, ask the patients?

Though it has positive potential, NHS Improvement also has the potential to become yet another arcane and somewhat obscure NHS body. Yet one of the groups who understand a great deal about what might provide disproportionate improvements within the NHS are that chronically underrepresented group who use it every day; patients.

While NHS England continues to have its own political priorities and funding considerations, when HSCIC is telling patients what did actually happen to their data, patients can (also) feed back to NHS Improvement what they believe should have happened – a genuine partnership in improvement.

medConfidential notes the various calls for medical records for patients’ direct care to flow with patients along care pathways as a priority, following consent for treatment – and the new (or pending) legal requirement that the NHS number be the mandatory identifier.

Both of these are generating some levels of patient concern. However both can be implemented in a manner which enhances trust, rather than risking it further.

Reporting to HSCIC that a particular NHS number has entered an organisation for care, and whether this was via a ‘handover’ of electronic records or through some other means (e.g. non-electronic referral, for example from A&E – or if there was some form of electronic handover failure) would begin to assuage a range of concerns. HSCIC could also then publish aggregated statistics for each pair of providers, to show how the different types of record handoffs (successful, failed, or other-manual) had worked, with the aim of increasing successful handling of electronic records for direct care along a pathway.

For providers receiving data on a care pathway, a figure could be provided of the number or percentage of patients who had refused consent for their medical records to be handed across electronically to/from that provider, but who consented to care. There will be a range of issues around this, e.g. Mental Health records being restricted – and where there are ‘outliers’ for a particular provider or flow (either due to technical issues, or because of consent choices) these will need to be addressed through a transparent process.

For patients, HSCIC should then be able to report to each person individually, via their Personalised Data Usage Report, everywhere their NHS number (and associated data) has been passed. As patients can learn exactly what does happen to their records, and why – and that it is the norm for this to happen without incident – this will contribute to a tendency towards increasing trust around the handling of records.

This process should be systematic, automatic, accurate and, over time, complete.

Additionally, as the expectation becomes that records do flow, patients will be able to see where this flow hasn’t happened (in addition to potentially experiencing the effects) and can raise questions – which is entirely appropriate if, as is asserted, sharing of medical records along a care pathway for direct care will improve outcomes. It is far more important to patient care and safety to know and correct flows for direct care where they aren’t happening as they should, as it is to know the data and flows for secondary use.

We emphasise the distinction between direct care – in effect, data sharing with implied consent between medical professionals who interact with and provide treatment to a patient – and secondary uses, which cannot presume consent, and for which patients have a right to opt out.

To illustrate this with a recent example; there are very few reasons to dispute or object to medical records being used for direct (“integrated”) care in, say, a meeting held between and run by medical professionals with a duty of care for a particular patient with complex needs, to devise a specific care plan for that patient. But a secondary use of that same information would be a meeting run by an accountant looking ways to manage the impact of a “high cost” individual.

It is entirely up to the system to transparently describe and discuss the difference, and it is the public knowledge that this will be examined which helps keep the system honest. And therefore trustworthy.

One of the things about data releases is that there are cockups. Even if we accept your argument that you’d never screw it up, what about the people who follow you, and the people who follow them? Or your predecessor?

In medConfidential’s usual health arena, those cockups tend to be cognitively uncomfortable, or include difficult tradeoffs, as do many decisions to do with people’s health. However, down the road at the Department for Transport, they have examples that have similar potential effects, but that are easier to talk about at parties.

Everyone knows what a train is and, while trains do crash, we have some idea of just how rare that actually is, and get on them daily anyway. For that reason, the examples in this blog post will look at transport, rather than health.

Finding your way to cockup boulevard

Our friends at the UK Anonymisation Network recently published a presentation on the process of anonymisation – mostly looking at the process that organisations should go through. (While the presentation was published in the context of open data, the rules apply for any data.) Full details are in the presentation and its accompanying documents – for the purposes of this post, the description and process in Section 2 is pretty good, within some constraints:

• Describe your data situation
• Know your data
• Understand the use case
• Understand the legal issues
• Understand the issue of consent and your ethical obligations
• Identify the processes you will need to assess disclosure risk
• Identify the disclosure control processes that are relevant to your situation
• Identify who your stakeholders are and plan how you will communicate
• Plan what happens next after you have shared of released data
• Plan what you will do if things go wrong

The last point is the kicker; this is hard. What happens when you cock it up? Or, if not you, your successor’s successor, who has less of an understanding of what the words actually mean than you do?

The whole process relies on those following the process having an understanding of not only what they’re doing, but the wider data environment in which they are operating. For many organisations, there is a fundamental denial of anything that’s even just outside their narrow silo, let alone the wider “environment”, and that’s going to get messy.

It doesn’t matter how good your SDC process is if you don’t care about the world as it is, rather than just how it would be convenient for it to be. Data, once released, cannot be un-released. Future releases may be stopped (with resultant damage to confidence in the data environment), however, the existing releases will still have been released. Under an Open Data License – which is necessary for arbitrary reuse – it is particularly difficult to get them back.

Some of these will be pure accidents.

Take as an example Transport for London, who run the “Boris bike” hire scheme, and who publish details of cycle hires – from where to where, and when. Data that produces many of the pretty cycle hire maps you see.

The data published should be “a row identifier, the length of hire, the start time/date, a Bike ID, the Start Location, and the End Location”, thus:

Rental Id, Duration, Bike Id, End Date, EndStation Id, EndStation Name, Start Date, StartStation Id, StartStation Name
18884041,271,4313,02/01/2013 13:32,251,”Brushfield Street, Liverpool Street”,02/01/2013 13:28,509,”Fore Street, Guildhall”

A significant amount of public benefit can come from such data being available; many different analyses have been done.

Sometimes the choice to release is deliberate. (The release of New York taxi trip data was a deliberate, if ill-considered, act.) But at some point last year, someone at Transport for London just made a mistake.

For a couple of months, TfL accidentally included the “hire key” ID, which is the identifier of the person who hired the bike. As such, it was possible to derive sensitive details using other data known about the various trips of individuals.

Avoiding cockup boulevard altogether

Whether deliberate or accidental, such issues come from fundamental category errors. We see this a lot – such as people perceiving linked achievement data as a dataset about schools and teachers, without appreciating the crucial significance of it containing the life experiences of children. Some projects see doctors and nurses – people who, when they were aged about 13, decided to spend their life helping people – and consider that an exploitable resource for acquiring nice things.

It will become increasingly common to wrap such things in the banner of “data”, and claim the magic pixie dust will solve all. How likely is it that such category errors will be nowhere within your organisation, and never occur? Especially in a political bureaucracy where you have powerful individuals “masterminding” a programme without regard to the details?

It’s a good thing that the UKAN assessment process has cockup sections one and two.

What is Open Data?

Open data is data published for all to use, with no limit on purpose – which is why personal data cannot ever be open data, except for matters of public record (i.e. some legally-mandated details about people who have power or influence over others’ lives). When aggregated and properly treated, fully anonymised results about people – statistics – can and should be open data. However, any failure to follow a full and complete statistically valid process means you are actually publishing personal data.

In ethical practice, the only entity who can publish rich, detailed personal data on an individual is that individual themselves. It can only ever be something someone does themselves, and not something people do to them.

And broad, open-ended ‘consent’ just won’t cut it. Even if you get someone’s permission for a bunch of the good stuff you imagine doing with their data, it’ll be the bad stuff you haven’t thought of that someone else does that’ll screw you. And the people whose personal data you published. Depending on circumstances, this could be downright abusive or worse.

I may choose to post photos of my meals to instagram; someone I don’t know choosing to post all my meals to instagram is just creepy.

P.S. Good luck to Mike Bracken and Tom Steinberg in their future endeavours.

NHS England is still trying to justify in 2015 what it tried to sneak through in 2013. Has it learnt nothing?

• Original Sky News piece and article;
• NHS England briefing;
• PharmaTimes repeats NHS England briefing.

Disclosure: Sam Smith of medConfidential sits on the Privacy Advisory Group for the Office of National Statistics’ (census replacement) Beyond 2011 & Big Data programmes, of which the expert academic at the Oxford Internet Institute interviewed by Sky News is also a member.

Does the database exist?

NHS England: “firstly, there is no database of information for the care.data programme yet”
NHS England: “confirmed that pilot schemes are starting again”
NHS England: “To access the data collected as part of care.data, applicants will need to…”

NHS England itself acknowledges, on a page named “our plans”: “for example, the hospital episode statistics (HES) service has been collating administrative information since the 1980s about every hospital admission funded by the NHS.”

So there are existing databases which are vulnerable to these problems and a new database is being built, it’s just not been built yet. (The ‘new’ specification in 2015 appears to be the same care.data specification from 2013 – with various ‘mistakes’ covering HIV, HPV, and AIDS codes corrected.)

Aspects of the existing data services are as concerning, if not more so, than the care.data proposals.

“A statement and briefing were provided to Sky by NHS England ahead of broadcast”

On Thursday evening, NHS England contacted medConfidential, having seen our tweet, to say they had commented to Sky News. But, as of Monday, the Sky News piece still contained no attributed quote or statement from NHS England. It has a quote from the programme director at HSCIC, not NHS England.

We don’t know the ins and outs of exactly who said what to who when but, yet again, it seems that NHS England is hiding behind another government body – the Health and Social Care Information Centre – to provide justifications that do not speak to the full consequences of its own future proposals.

HSCIC is a “creature of statute”, a body which in law may only do things as Directed, including by NHS England. NHS England is the puppeteer cowering behind the curtain, insisting the puppet’s the one at fault.

“this would be a criminal offence”

While ‘hacking’ into a database of medical information would indeed be a criminal offence, it is rather beside the point. It’s the the ‘Hollywood scenario’ of a remote attacker defeating NHS England’s defences with cunning from their back bedroom, or North Korean data terrorists launching an attack.

What is far more relevant is that copies of the data (HES, etc.) have been sold [1] to a whole range of organisations and companies, many of which continue to receive data. And there are no criminal sanctions for misuse of the data by the recipients or data breaches, which – despite previous denials [2] – we now know there have been [3].

NHS England is quite clear that confidential data is already being sent to places: “confidential data is always encrypted whilst in transmission and the secure networks used to transfer data are regularly tested and monitored for any vulnerabilities”. (Unless David Cameron succeeds in outlawing it, as he proposed last week.)

In the case of the Sky News piece, the researcher acted entirely ethically and correctly in using the information provided by the journalist – who had given full and informed consent, and was clearly aware of the risks. Those who would rather continue the status quo and placate, rather than inform, the public are less likely to explain all of the risks and mitigations to a journalist. And highly selective ‘explanations’ do not give the full picture.

Given the continuing distribution of 25 years of hospital records – over 1 billion dated events – this research identifies both the grave risk to the medical privacy of the country, and the continued wilful ignorance of NHS England.

1) On a “cost recovery” basis.
2) On BBC Radio 4’s Today programme, 4 February 2014, Tim Kelsey claimed “in 25 years there has never been a single episode in which the rules… have ever compromised a patient’s privacy.”
3) HSCIC’s FOI response on 7 April 2014 lists a data breach in every year from 2009 to 2012; HSCIC holds no records from before it was formed in 2005.

Where does the data go?

NHS England: “To access the data collected as part of care.data, applicants will need to go through an approvals process and then, during the pathfinder stage, can only see it in a secure data facility (SDF). During pathfinder stage, access applications will only be accepted from select organisations and there is a robust security procedure in place when the applicant visits the SDF.” [our emphasis]

The crucial point being, what about after the pathfinder stage? Where will applicants be able to “see” the data then?

Will NHS England revert to current practice, as for HES and other data, and permit copies of the data to be sent out? There’s little point constructing a “secure data facility” if it is not then used for all future access to the data.

If all NHS England will promise is to keep patients’ data in the SDF “during the pathfinder stage” then it is just a temporary safeguard, which can be removed for the full national roll-out.

So why won’t NHS England promise that patients’ data will always be kept in the secure data facility? It clearly wants to keep its options open – but if the intention is for data to be accessed in other ways in future, why aren’t patients and GPs being told? Given NHS England’s track record of miscommunication, trumpeting what actually amounts to a tightly time-limited conditional safeguard does very little to inspire confidence.

“NHS to carry on selling patient records to insurers” – Telegraph, 27 November 2014

NHS England: “credit rating agencies or health insurers would not be granted access to the NHS’ secure data facility where the information will be held.”

This may sound pretty definite, but can NHS England cite the precise part of legislation which provides the same level of certainty as that statement? We doubt it, because it has never previously been able to do so. NHS England argues the claim on the Telegraph front page was false, but has never provided any evidence to support its assertions. And we’ve asked, repeatedly.

In fact, the law remains mute on the types of companies that may have access to the data – it concentrates on uses – and the undefined phrase “for the promotion of health” leaves open loopholes for data access that even McDonalds or Big Tobacco might use. (Regulations that might begin to address this, for the Care Act passed in May, are still unpublished.)

Misunderstanding the ‘birthday attack’

PharmaTimes: “NHS England said the suggestion by Sky is incorrect, saying the likelihood of being able to identify an individual “is negligible”

NHS England is again misleading the public.

As an analogy, if you consider a classroom and pick two children at random it is highly unlikely – 1 in 133,225 (i.e. 365 x 365) – that they will both have a specific birthday. But if you walk into that same classroom of 23 children or more and ask “Do two of you share a birthday?” then the chances are better than 50-50 that the answer is yes.

Example 1: Know someone who had a heart attack?

Presume someone you know has had a heart attack.

NHS England has 181 A&E departments [4] handling England’s 386 heart attacks per day [5], so each A&E receives, on average, 2 heart attack victims per day. Which, even without any other information, gives a 50% probability of spontaneous identification of a victim whose hospital and date of event is known (neither should be sensitive on their own). As the OII research into the Sky News journalist argued, that is information that gets tweeted, as it is ‘not sensitive’.

Because the data is linked over time – ‘longitudinal’, to use the proper statistical term – discovery of a single medical event would mean you can use that pseudonym to link back to all of that person’s other medical events, because “the pseudonym is allocated to the record instead” (NHS England).

It doesn’t matter what the pseudonym is or what form it takes, what matters is that it links the records. The information associated with the date of the event is what gives you the link to a victim, not the NHS number or pseudonym.

NHS England is therefore being disingenuous when it says “once a patient’s record has been matched, the information that could identify a patient is removed and the pseudonym is allocated to the record instead” and that pseudonyms can be converted back to the original identifier “only by using the specific encryption key that created the pseudonym” and this is “only ever disclosed in very exceptional circumstances”.

Of course NHS England does not disclose the original identifier (NHS number). The key point that the researcher made, and that NHS England missed or continues to wilfully ignore, is that this is completely irrelevant.

And it shows that NHS England has learnt nothing from the concerns of the last year.

In February 2014, David Davis MP argued that knowing the dates he had his nose broken (due to media attention) would mean his entire medical record could be identified. NHS England has never refuted this argument with substance.

4) DH count. See https://www.whatdotheyknow.com/request/131933/response/325271/attach/3/Annex%20A%20Final.pdf 
5) 141,000 per year in England: https://www.bhf.org.uk/publications/statistics/cardiovascular-disease-statistics-2014

Example 2: Women with children

NHS England seems to believe that your children’s birthdays are secret.

For example, by the HSCIC’s own rules, in HES the date and code for “Birth date – baby” is deemed identifiable, but the date and code for “maternity: where the baby was delivered” is not [6]. These are the same event, stored twice, but treated as if they are entirely different. Removing only one of them does not magically turn HES into non-personal data, and HES contains dozens – if not hundreds – of such fields.

Similarly, a family is identifiable by knowing the birthdays of the children. For a family of 2 children, there is a 90% likelihood that the birthdays of the two children are unique. For a family with 3 children, the children’s birth dates are almost certainly a unique identifier for that family in the country, tracked via the mother’s medical history.

On average, one set of twins are born in each maternity hospital in the UK per day. There are just 208 triplets born in the UK per year, i.e. fewer than one per day. If you know the birthdate of a triplet you could therefore read off the entire medical history of the mother via that single event.

6) For a single illustrative example, see HSCIC HES inpatient data dictionary, page 11, field: admimeth (and many, many others). This is only one method of delivery, others are equivalent.

Example 3: Who gets chemotherapy?

NHS England repeatedly argues that its care.data programme is necessary because “the NHS isn’t capable, currently, of telling you how many patients are undergoing chemotherapy, for example”.

In fact, the vast majority of chemotherapy is delivered in secondary, not primary care. Extracting data from GPs’ systems would provide no more information than is (or should already be) gathered from the actual providers. If you want to know who is receiving treatment, the most sensible choice is to go to the source of the treatment.

And to count the number of people, it is simply not necessary to know who they are – a count of unique identifiers is enough. NHS England is mandating the use of NHS numbers by care providers, and that mandate is in the process of being passed into law.

To count people, you need to know only that you’re counting non-duplicate entities. It does not matter whether you use names, physical people or their pseudonyms (e.g. telephone number, NHS number, or an arbitrary pseudonym).

Worked example 4:  Don’t get into an accident

Relatively minor medical events of those in the public domain are often reported – how many women of a particular age reported to a particular hospital with an elbow injury, for example, the day that Nick Clegg’s wife broke her elbow in 2010, just before the general election? [7] – and even the most private of individuals can find themselves in the newspaper due to an accident.

Standard journalistic practice means that accidents reported in the local press will include the date of the event, a person’s name and age, along with the area of town – in some cases even the road – where the victim lives. Such reports usually provide enough information for an informed guess at likely diagnoses, which can then be matched with a particular incident. (With regard to example 2, the same would be true of someone announcing the birth of their triplets on Twitter or Facebook.)

An experiment by Professor Latanya Sweeney of the Harvard Data Laboratory starkly demonstrates the risks of matching within ‘de-identified’ data, i.e. data where some identifiers have been removed, rather than being replaced by pseudonyms.

Taking the US equivalent of HES – de-identified public hospital records for a state – and using articles in local news reports giving an indication of types of injury, her team was able to confirm that merely by being involved in an incident where you were taken to hospital, it was routinely possible to match to the victim’s entire hospital history, and discover details that even the patient had not told the hospital directly, but which had been discovered from their medical profile.

When contacted by the project, patients were horrified to find they could be identified and have their medical history exposed from the data made available.

7) https://www.google.com/search?q=nick+clegg+wife+election+elbow+broken

Pseudonyms

Identification isn’t just about finding someone’s name; it’s about linking an individual’s data records together so that you can learn things about them. If I know your home address, gender, date of birth, hair colour, eye colour, weight and telephone number, it doesn’t matter how many characters are in your database’s pseudonym – what matters is that I, and my data, can be (re)identified.

NHS England’s argument is bureaucratic obfuscation. It’s like saying that having a phone number doesn’t tell you who someone is and then blaming the patient for answering the phone with their name.

Or in another analogy, it’s the sort of approach that insists you have to know the name of the bug that bit you in order for it to matter. We don’t have many small poisonous bugs in England, but other places do. Small creatures have many names; they have their Latin classification, they have names in English, and in local areas they have names in local languages, etc. In short, they have many pseudonyms – but it’s all the same bug.

If you’re bitten by a poisonous bug, the sensible medical approach doesn’t care about its actual name but rather, by asking questions about its attributes – what colour was it? was it spotty or stripy? how many legs? any wings? – the care provider can work out the appropriate treatment. The name really doesn’t matter; what you care about is the antidote, a name you will care about far, far more! At best, whatever the bug is called may be a link between looking it up and how you cure the bite – but you really don’t need the name.

Attempting to make this all about pseudonyms seriously misses the point. The real problem is the linked individual-level data that the NHS has treated so egregiously badly in the past, which with this argument NHS England appears to continue to want to do.

In 1989 this was all new, and difficult. In 2015, there are no excuses.

In summary

NHS England’s scenario: “In the extremely unlikely event an individual was able to ‘hack’ the system, they would need the encryption key to convert back the coding” is a diversion.

The point is not that one can infer an individual’s identity from the linking pseudonym – taking the “100 character” pseudonym to “convert back the coding” – it’s that there is so much other data in the file that you don’t have to.

As detailed above, in the ‘Hollywood Scenario’ the chances of someone arbitrarily picking a row in a dataset and knowing who it is are slim. But, as PharmaTimes suggests, that’s the imaginary plotline for a movie, not real world protection of patients.

Can NHS England tell the difference? We suggest they listen to the experts who can.

For the rich, dated linked data about which NHS England has given no assurances regarding dissemination beyond the ‘pathfinder’ stage of care.data and using widely-available other information, as the researcher at OII and our by no means exhaustive examples show, there are many ways to identify people’s medical records in individual-level data – regardless of whether it has been pseudonymised (or de-identified).

That NHS England continues to try to mislead the public on this fundamental point in 2015 suggests the “pause” it took to “listen and understand” public concerns throughout 2014 was not enough. Continuing to hold onto and propagate the fantasy that pseudonymisation makes the possibility of re-identification “negligible” is either naïve or incompetent.

We’re not quite sure what’s worse.