Thoughts on the Risks of #Care.Data

Care.Data is the government's plan to centralise patient records from English GP surgeries. This has some clear benefits, in providing a database that can be used for epidemiological research, recall of medical devices (c.f. the breast augmentation scandal), spotting side effects of medication and the like. Unfortunately the proposals for England have major issues with respect to privacy, as they will see the selling of incompletely anonymised data to industry, data which is then NOT subject to the Data Protection Act. Care.Data is currently on hold for six months over the privacy issues, with the Information Commissioner's Office stating that the NHS clearly failed to provide adequate information on the privacy risks in the mail shot it sent to every household in the country (but which most of the households in the country appear not to have received). And when I say it didn't provide adequate information on privacy, I mean that it failed to raise the issue at all, the closest it got was a small paragraph mentioning that it was possible to opt out, without providing any indication of how to do it.

Dr. Margaret McCartney has written a particularly good article for the BMJ, discussing the risks with the English system, noting why the proposals for Scotland and Wales are clearly better, and linking to many of the relevant facts. It's rather revealing that among the companies asking for access to Care.Data are a right-wing think-tank, and two private medical providers.

The people running Care.Data have said that they will address the privacy concerns, but to date their approach seems to be to deny that there are privacy concerns, which really doesn't address the issue of patients being able to give 'informed consent' (required by medical ethics) for this data-sharing. The absolute failure to address privacy issues in the Care.Data leaflet (assuming people received it at all) means only those of us who also have an interest in IT privacy issues and have followed the Care.Data issues are currently in a position to make a decision based on informed consent.

My primary concern with Care.Data is that it opens up individual patient records to a hugely increased number of NHS personnel, greatly increasing the risk of a massive leak of data, a risk illustrated by the Chelsea (Bradley) Manning and Edward Snowden leaks from US intelligence databases. The more personnel who have access, the greater to unity becomes the risk of a major leak.

While linking one medical record back to an individual represents an investment in effort unlikely to be worth the investment in time, the process of linking tens of thousands, hundreds of thousands or even millions of records to identities becomes an obvious case for automation, and the resulting database has clear potential for monetisation. The phone-hacking scandal has demonstrated just how widespread is the risk from people willing to go to any length to access personal data. (Update: And as of 24th February and the Telegraph revelations detailed below, we now know the insurance industry has done precisely this with the inpatient records of 47 million people).

Having already faced career-destroying employment discrimination over disability issues, and facing a clear dilemma over whether to declare to a prospective employer all of my disabilities or not, the idea that a black-hat hacker might be able to set up a service checking medical backgrounds of prospective employees (in much the way that the Consulting Association used to run a blacklist for engineering firms) is not one I can face with equanimity. I can see the clear potential of Care.Data to do good, but as it stands my concerns over security mean I am likely to opt out.

Update:
No sooner do I write about the potential risks of Care.Data then we find out the worst case may already have happened. A Telegraph article reveals that the complete set of NHS inpatient records for the 13 years from 1997 to 2010, covering 47 million people, has been sold to the insurance industry, who have then linked that information back to individual people via DoB and postcode (which is a seriously flawed methodology if true, it's entirely possible to get two people with the same DoB and Postcode, even name, DoB and Postcode will have duplicates), combined that with consumer credit information and used it to justify increasing the cost of health insurance for certain individuals. The Guardian is running an article quoting the Telegraph, but including a few additional details.

It's going to be particularly interesting to see how the legality of this is judged. As soon as 'Staple Inn Actuarial Society' created a database linked to individual people and their medical records, they exposed themselves to the most stringent provisions of the Data Protection Act. If they haven't registered this with the Information Commissioner there will be hell to pay, if they have, and the ICO has okayed it, then there will still be hell to pay, but not just for the insurers. If this had been done with CareData data packages, then it would be specifically illegal, whoever authorised the release of data may well have known that, and while they may not have broken the law because this wasn't CareData per se, they are likely to find themselves with some particularly awkward questions to answer.

It's going to be a particularly rough week for the CareData advocates, especially as the NHS is up in front of the Health Select Committee in the morning on precisely this issue - in fact the timing of the Telegraph story screams deliberately timed leak - and I'm willing to bet on it making an appearance at Prime Minister's Questions as well. Big business and the NHS in collusion over the selling off of the most personal aspects of people's medical data, in advance of that sale being made illegal, and that data then being used to justify increasing insurance costs (already an issue over the floods) is a perfect gift to Labour.

Depressingly, at exactly the same time the Independent has published an interview with the Information Commissioner in which he says the courts aren't treating data protection with nearly enough seriousness.

Distinctly Divisive

Now an article about the cuts by a respected disability academic would normally be a good thing, but in 'Distinctly Disabled' Mike Oliver delivers a message insidiously divisive enough to have been written by Esther McVey's Special Adviser (and I say that having spent a good few hours challenging similarly divisive messages coming out of McVey's 'Disability Confident' fiasco just a few days ago). There's really no way to get into this without getting into disability theory, so apologies in advance.

I'd advise reading the article to understand the full scope of Oliver's article, but it can be roughly summarized with two quotes:

"the link between illness and disability should be severed for the purpose of planning and delivering services"

And:

"while non-disabled people who are ill get better, for disabled people, while we may recover from our illness, we will never recover from our disabilities"

And a conclusion:

"In these hazardous times, we need to be very careful not just with what we think or do but equally importantly, what we say about ourselves."

In essence, Oliver wants us to reject the idea of 'sickness and disability' and concentrate on disability alone, it is just a pity that that isn't a distinction the reality of disability and impairment recognises.

Ultimately this comes down to interpretations of the Social Model of Disability, which rejects the Medical Model concept of our being broken by our disabilities and needing to be fixed by godlike doctors descending from the Ivory Tower of medical science and instead holds that Disability is the discrimination we experience because of the refusal of society to put in place adaptions to our impairments. It's important to understand that this doesn't just mean things like making sure buildings are wheelchair accessible, but also challenging and changing the perniciously damaging attitudes towards disability that allow people to say things like 'I'd rather be dead than in a wheelchair,' and not realise for an instant that they've said anything wrong.

We debated these points long and hard on the old BBC Ouch bulletin board, because many disabled people, often with relatively straightforward mobility impairments, get hung up on the ramps thing and think that's all the Social Model relates to. But by chance Ouch was a hotbed of Bendies (people with EDS and HMS) and Spoonies (people with ME, CFS, CRPS, Crohns, Lupus and so on), people whose impairments are inherently messier, without such simplistic dividing lines between sickness and impairment.

Taking myself as an example, my Hypermobility Syndrome (a genetic syndrome affecting connective tissue) results in a clear mobility impairment, I walk with crutches, but inherently fuzzier is the Chronic Pain Syndrome that comes as part and parcel of HMS. My reaction to pain is abnormal at the neurological level, neuroplastic remodelling makes pain a norm rather than a response to painful stimuli. My doctors have long since given up on any hope of curing me, my Consultant deals in 'pain management', not 'pain curing', I am, to quote a term that seems to horrify Oliver, openly considered incurable. Yet I also have an ongoing need to see doctors about these more sickness-like aspects of my disability. Unlike, say, the common conception of a wheelchair user, my impairment is inherently variable, I don't know how much pain I'm going to wake up in, I may struggle to walk 10m, or stand at all, or I may walk almost normally, and these things may change from one step to the next, or in flare-ups that spread over months. When I have a major flare-up, I may need to negotiate new painkiller dosages, or even new drugs, with my GPs, just to keep the disability I face from my impairment at a controllable level. In other words my impairment keeps me in contact with the medical profession in a way that most people would normally classify as corresponding to their idea of 'sickness'.

This concept of negative effects emerging directly from an impairment seems to be one many Social Model supporters have a problem with. They're all on board with the idea that society needs to remove obstacles to our use of the built environment, that failing to do this is a form of discrimination we classify as 'disability'. If they aren't already there then they can usually be brought around to the idea that really implementing the Social Model means changing the way society thinks about impairment, because that's a form of 'disability' too, but the idea that 'disability' might result directly from an impairment is a step too far for many, who see that as an attack on the distinction the Social Model draws between the two. Yet if I'm due to meet someone, and can't get there not because the meeting is inaccessible, but because I'm in too much pain to get out of the house, or even out of bed, then doesn't the Social Model demand that they not think any the less of me for that? If I'm like a bear with a sore head because of the amount of pain I'm in, then shouldn't they recognise that my impairment results in consequences for me that they should adapt to? This is a step which many Social Model advocates seem to have difficulty with, but if the Social Model doesn't recognise all the consequences of my impairment, then either there is something wrong with the Social Model, or with how completely they have understood it.

Oliver wants to separate 'sickness' from 'disability', but for many disabled people our impairments make such a divide meaningless. IDS and McVey don't care about it, they want ALL disability to be seen as curable; the thugs who harass me in the street don't care about it, they simply see that I am different, and the hate-sellers of the Mail and the Express have told them it is proper to hate me for that. Oliver can argue for his distinction, but it won't change the reality, all it will do is create an internal schism within the disability movement, between those of us who want to protect everyone, no matter whether they are 'disabled', 'sick', or both, and those who want an exclusivist definition of disability that has no truck with any of those messy sick people. IDS, McVey and their SpAds must have loved Oliver's article, because a leading light of the disability movement is advocating throwing a huge number of disabled people to the DWP wolves in order to lighten the sleigh and let those with more classical disabilities survive the purge.

I should point out I don't reject all of Oliver's argument, there is a valid distinction to be made between aspects of impairment that require medical intervention and aspects of impairment that don't, but if I'm facing a Work Capability Test, a PIP assessment or whatever punishment IDS dreams up next, then I need it to address all aspects of my impairment, not just the ones that Mike Oliver thinks make our political position more defensible. In fact it was precisely my former employer's response to the pain aspects of my impairment rather than the mobility aspects that mean I no longer have a career and am at the mercy of things like the WCA, and that led me to take out an Employment Tribunal case for 'disability discrimination'. Been there, done that, needed sickness to be covered.

Ultimately Oliver seems to have committed the most fundamental failure for an academic and failed to define his terms. He talks about 'sickness' and 'disability' and fails to delineate precisely what divides them, and if he had done that, then he would have realised that for many disabled people, Spoonies and Bendies prominent among them, his distinction doesn't reflect the reality of our impairments.

Some Passengers are Less Equal than Others

(While I normally blog from the perspective of a disabled person, I’m writing this piece in my alternate persona as an aerospace professional)

There’s a sad contrast between two aviation stories this week. On the one hand we have the Paris Air Show, with the industry slapping itself on the back as the week closes with somewhere north of $165Bn of orders (yes, that figure is billions) for over 1000 airliners, 1500 when options are included, on the other we have this story from the Daily Telegraph, with Thai Airways invoking the Montreal Convention to get out of paying the full £3600 cost of replacing a disabled passenger’s wheelchair damaged during a flight. 

A national carrier trashes a disabled passenger’s wheelchair through negligence, then weasels out of paying for it? What kind of impression of the industry do we want people to take away with them? In some ways this isn’t surprising, the EU estimates that there are between 600 and 1100 incidents of mobility equipment being damaged in transit on airlines or within airports every year, just within the EU, and that disabled people travel at a significantly lower rate than non-disabled people as a result. Yet the cost of full replacements in those incidents is likely to be significantly under £5m, a piddling sum in comparison to the $165Bn worth of business done this week at Paris, or the value of all passenger flights within the EU over the course of a year.

The Montreal Convention limits enforceable compensation of baggage damaged in transit aboard an aircraft to 1131 SDRs (Special Drawing Rights, about £1100), but even a basic individually-fitted, manually-propelled wheelchair is likely to cost more than that, and if the user’s disability requires additional customisation or a powerchair, then the likely cost of replacement will exceed the Montreal Convention compensation several times over. The EU in a report on the liability of air carriers in these cases and the supporting survey notes that disabled passengers face far greater disadvantage as the result of damaged baggage than do other passengers, with the loss of mobility equipment potentially bringing their life to a screeching halt for weeks or even months. The EU further notes that the US and Canada have worked around the Montreal Convention by making full compensation for disabled passengers a pre-condition for the right to fly in their airspace, and notes that it may have to do the same unless the situation resolves itself as a result of the EC 1107/2006 rights of Passengers with Reduced Mobility when travelling by air. However the EU survey revealed extraordinary complacency among the airlines, and to a lesser extent airports, who felt that all needs of passengers with reduced mobility in the event of damaged mobility equipment were being fully met. There doesn’t seem to be any real sign of change resulting from EC 1107/2006, with stories of passengers refused boarding, outright abused by cabin crew, or having their wheelchairs or other mobility equipment trashed in transit still crossing my twitter feed on a depressingly regular basis.

As an industry, does aviation want to be seen as a force for passenger equality, or a reactionary force that has to be dragged kicking and screaming out of the 19^th Century? The Thai Airlines story suggests that latter, while Paris suggests the industry is awash with money to the point it could solve all the issues of disabled passenger rights and lose the costs in the rounding errors. The choice is ours.

#BADD2013 When Demonisation Makes Sense

If we look at the politics surrounding disability in the UK over the past couple of months, then some of the decision-making seems disturbingly irrational, or worse, disturbingly rational. 

The Bedroom Tax stands as one of the most openly unpopular measures adopted by the Coalition, people can understand that demanding families move to smaller accommodation when that smaller accommodation simply doesn’t exist is not simply unfair but outright wrongheaded. And the unpopularity of the Bedroom Tax is not simply a theoretical consideration, the Poll Tax caused rioting in the streets and destroyed a previous Tory government. In that situation, and with growing media focus on the Bedroom Tax,  it was politically important to dress up it up in as much goodwill as possible, yet the Department of Work and Pensions went all the way to the Supreme Court, refusing only at the last hurdle of letting the case go to trial, to try and force two children with very different disabilities to share a bedroom; and while they may finally have backed away from being seen to bully disabled children over a bedroom, they did not back away from insisting that if an adult couple could not share a bedroom due to disability, then they would be considered to be under-occupying.

Equally the last few weeks have seen Iain Duncan Smith, his junior ministers, and the Tory Party Chairman Grant Shapps all laying into disabled people in the tabloids, the broadsheets and on TV with claims that ‘a million of them could work’ (IDS), that ‘they get better’ (Esther McVey, Minister Against Disabled People), and that the Work Capability Assessment has scared hundreds of thousands of scroungers away from claiming Employment and Support Allowance (Shapps). The political need to demonise disabled benefit claimants has passed, the Welfare Reform Act is law, the slashing of disability benefits is a fait accompli, there is no more ground to be gained in Parliament, but the demonization continues on. The only conclusion that can be drawn is that Tory Central Office thinks there is something to be gained for the local council by-elections happening tomorrow, and that they make that gain not by any specific political aim, but simply by demonising us.

And isn’t that an unpleasant fact to face, that as disabled people we are now so unpopular that simply attacking us may incline people to vote in a specific way.

[Photo: Computer generated image of a small child in a wheelchair under the legend 'Mr Duncan Smith says I Caused the Financial Meltdown']

(One of my two posts for #BADD2013, the other is here)

#BADD2013 Behind the Mask

It’s Blogging Against Disablism Day 2013, and that’s driving my thoughts to where we stand, and how society views us.

Ten years ago things were looking if not good then at least hopeful, society was starting to think about our position and our right to be equals, rights increasingly recognised in law. Today, things aren't even hopeful. The language of politics is turning against disabled people not just in Britain, but throughout much of the English-speaking world. Where we were shifting from ‘the disabled’ to ‘disabled people’ (or ‘persons with disabilities’ in the US), we are now increasingly portrayed as ‘skivers’, ‘layabouts’ and outright frauds. Disability hate crime is up, disability benefits have been slashed, and disabled peers have just narrowly won a battle to prevent the Coalition removing the General Equality Duty of the Equality and Human Rights Commission, its legal mandate to try and make us a more equal society. Not so very many years ago I was able to get the Minister for Disabled People to intervene on my behalf when the Department of Work and Pensions was refusing to acknowledge my disability, now we increasingly talk about ‘the Minister Against Disabled People’, while even more senior ministers, such as her boss Iain Duncan Smith, a man who once hoped to be Prime Minister, rant about how there are a million of us who could work if we really wanted to.

In the US, there are similar attempts to portray disabled people as benefit scroungers, while Congress refused to ratify the United Nations Convention on the Rights of Persons with Disabilities – that’s right, the country that prides itself on being the ‘Home of the Free’ refused to ratify a treaty enshrining disabled people’s right to equality. In Europe and elsewhere in the world it is more difficult to keep track of disability rights across the language barriers, but there are disturbing stories out of Greece of hospital staff having to raid their own supplies in order to provide back-door medical care to those cast adrift by the savage austerity cuts demanded as part of their country’s financial bail-out.

We can talk about insurers and disability denial mills, and about how their twisted seed of hate, that we were too lazy to get better, fell on fertile ground with the institutionally disablist Department of Work and Pensions, we can talk about ministers who would rather target disabled people than a more powerful lobby group such as pensioners, or, god forbid, the bankers who fund their personal offices and their party coffers, we can even whisper about the likely impact of certain religious positions amongst those who write policy, but all that may be missing the point. To deny a disability insurance claim, to see disabled people as inherently lazy, to be willing to take advantage of disabled people’s status as a minority with little political power, to view disabled people as paying a penance for past sins, and to take these vicious lies as true and label disabled people as scroungers when prompted by tabloid headlines, all of these things require that you first hold disabled people in contempt.

Have we slipped backwards, or has the mask of progress simply slipped aside, to show us the disablist contempt still lurking within society?

[Photo: Nazi pro-Eugenics poster of a disabled man being supported in a twisted position on a chair by an attendant with a hand on his shoulder. To their side a legend in German states: '60 000 RM kostet dieser Erbkranke die Volksgemeinschaft auf Lebenszeit. Volksgenosse das ist auch dein Geld. Lesen Sie Neues Volk, die Monatshefte des Rassenpolitischen Amtes der NSDAP.' Which translates as 'This hereditarily disabled man will cost the community 60,000 Reichsmarks in his lifetime. Citizens, this is your money. Read 'New Race' , the monthly of the Racial Policy Office of the NSDAP.']

(One of my two posts for #BADD2013, the other is here)

DPAC, A Step Too Far?

DPAC (Disabled People Against the Cuts) and Black Triangle have issued a joint statement on the Work Capability Assessment, which can be read here, that's wouldn't normally be a problem, in fact anything which highlights the nightmare which is the WCA is generally okay by me; unfortunately the statement doesn't limit itself to talking about the WCA. The first two paragraphs state:

"We do not believe that any individual or group who claims to represent the disabled people’s protest movement should engage with DWP/Atos/Capita without insisting upon an end to the Work Capability Assessment (WCA) with immediate effect as a prerequisite to any discussion.

 We regard any such engagement with DWP/Atos /Capita without this insistence on the above as a prerequisite to be nothing less than collusion in policies and systems that have been irrefutably shown to be harmful and, in many cases, lethal to the sick and/or disabled person being ‘assessed’."

I’d be lying if I said I found this statement to be anything other than deeply problematical.

Let’s clarify what I agree with first:
DWP is an institutionally disablist organisation currently dedicated to demonising disabled people in order to legitimise deep cuts and IDS’s ‘tough love’ strategy
ATOS is not a suitable organisation to execute the WCA or PIP testing
Evidence is mounting (interpreters contract), that Capita will be just as bad, possibly worse
Supposed DPOs engaging in secret negotiations with government or contractors forfeit any right to trust.
Disability charities are deeply compromised by their dependence on government contracts.
The Social Model should drive all our aims.
The BioPsychoSocial Model is a bought and paid for perversion that demonises disabled people for the profit of the insurance industry.

But here’s the problem, we are dealing with a fait accompli; ESA and the WCA are operational, the Work Programme is operational, it is overwhelmingly unlikely we will be able to force a stop to the implementation of PIP, or to Universal Credit. These are the realities we must address, these are the realities within which we must strive to protect disabled people, and we must do whatever it takes in order to get those protections in place as soon as possible. Not even an election and a Labour government will change this reality because Labour policy on ESA is no different, which makes it unlikely they will flinch from PIP either.

In considering how we change this, it’s useful to consider the widespread government policy of not negotiating with terrorists as an analogy (with DWP and ATOS taking the part of the terrorist). The policy says no negotiation will happen in response to threats or terrorist acts, but it is tacitly recognised that a long term solution generally depends on negotiation with the terrorists, no matter how unpalatable that may be. It brought the Provisional IRA to the table and eventually into conventional politics, it appears to be doing the same for ETA and others. A policy that works is one we cannot ignore. Yet from the opposite side another analogy also speaks to the situation: if you would sup with the devil, use a long spoon.

We have seen mounting evidence of ATOS lies in tender document claims of engagement with organisations such as DPAC itself, they demonstrably cannot be expected to behave as a trusted party in any negotiations, similar concerns may apply to Capita, and the DWP. However this in itself does not mean that they cannot be engaged with, it simply means people engaging with them need to systematically record and publish those contacts in order to deny ATOS, Capita or DWP any opportunity to misrepresent what went on.

Let’s consider a hypothetical situation. If we could engage with ATOS sufficiently to force them to shift to an open complaints/quality system (which I think is one of their weaknesses), if we could get DPO representatives into that system as independent auditors, then would we be justified in refusing to do that in favour of hoping for the big win of killing the WCA at some unforeseen point down the road? Should we insist on a big win, when we might have a far better chance of a series of smaller wins taking us slowly but surely towards our ultimate goal?

Or let’s consider a very real possibility, we already have condemnation of the WCA from the GPs, that creates the opportunity for us to ally ourselves with them and use that link to gradually manipulate the GMC itself – if you want to kill the WCA, what better way to do it than to persuade the GMC to declare it as incompatible with a doctor’s professional duties? But to do that we have to acknowledge that the GMC, as a part of the establishment, will never accept a negotiation strategy that imposes preconditions on their participation, while talk of collusion will simply alienate them. The strategy will only work with a policy of engagement.

We didn’t get all the way from being locked in the attic to the Equality Act in one single move, there were a whole series of steps involved in getting us there. In the past couple of years we have seen pretty much all of the progress we have made in the past 30 years rolled back on a tide of media manipulation and disability hatred, we’re in this for the long haul, it is going to take years to regain everything we have lost and anyone who refuses to acknowledge that reality needs to stop and take a long, hard look at what our situation actually is.

And one of the realities is that it is deeply unlikely we can overturn ESA, or WCA, or PIP, or the disability provisions of the Work Programme, in one fell swoop. However it is far more likely that we can incrementally chip away at the overwhelming negativity of these programmes, and as soon as we achieve one concession, we just start agitating for the next.

Ultimately we have a choice, is it better to aim for one big win, lots of little wins, or both? DPAC and Black Triangle can dedicate themselves to the big win, but does that necessarily mean another DPO aiming for the little wins is working against us? As long as that DPO is open about its engagement and does not allow that engagement to be misconstrued, then can’t the two strategies be complementary?

The statement talks aggressively about other DPOs engaging in collusion. If it works, will we still call it collusion? If the answer is no, then we shouldn’t be calling it collusion now.

(I initially posted this as a reply to the statement on the DPAC site on Tuesday 30th, but 24 hours later it is still stuck in moderation, while other messages, and replies to them, have gone through).

Vote Early, Vote Often, Vote Lisy-Babe!

She’s cringing over the idea, but a bunch of us have decided that Lisa Egan, aka Lisy-Babe, aka the driving force behind Where’s The Benefit, should really be on this year’s Independent Pink List as one of the 101 most influential LGBT people in Britain.

Lisa is one of us, a wheelie, a spoony, someone whose disabilities brought her career as a stand-up comic to a grinding halt. Not one to let IDS, Lord Fraud and the rest of the bloodsuckers roosting in DWP Towers brand her, or us, as layabouts and scroungers, Lisa has been a major force in campaigning against the cuts in disability benefits and against the demonization of disabled people by the Tory press. Whether it is writing articles for WTB, or pushing herself to her limits to stand up for disabled people at demos and marches, I know that Lisa puts my efforts to shame, and I think that makes a real case for her to be on that list.

If, like me, you think a tireless disability rights activist sounds like the kind of person you want to see taking a place on the Pink List, then you can nominate Lisa here and you need to do it before nominations close on Sunday!

There's a longer piece on the many reasons you should vote for Lisa over at Diary of a Goldfish but all you need to remember is: Vote Early, Vote Often, Vote Lisa Egan!