A little piece of you – care.data dialogue

This is my fanciful contribution to the care.data debate. For a more rational account please see Jonathon Tomlinson’s recent blog post ‘Care dot data’, and Ben Goldacre’s accounts in the Guardian. This article (A simple guide to Care.data by Olivia Solon) in Wired magazine is very readable too; it discusses Green, Amber and Red data, how much agencies will pay to get it, and the feasibility of re-identification.

My reading of the situation is that people are concerned about two aspects –

1) the possibility of their personal medical details (‘secrets’, a term used by Ben Goldacre) being accessed by strangers; an issue of confidentiality

2) the possibility that agencies who are not part NHS affiliated or research institutions with adequate governance structures will use it to increase profits; an issue of transparency

oOo

Two retirees, Geoff and Pat. They meet again to discuss care.data. Geoff has major reservations, while Pat continues to bang the drum. Pat has been doing a bit of work to bolster his argument, as Geoff will discover.

G             “Any more thoughts on this care.data controversy?”

P             “I still maintain, it sounds like a great idea.”

G             “I’m opting out. No-one has got the right to see my medical details.”

P             “But no-one wants to see your details. It’s not personal.”

G             “It is if the anonymisation code is broken. Or if someone cross-triangulates the information.”

P             “But why would anyone want to do that? Why would they be so interested in your details?”

G             “Who knows. It’s the principle, that it can be done.”

P             “However unlikely that breach of confidentiality?”

G             “Yes, I worry that someone, at some point, might want to find out about my health.”

P             “And you think that would be the best way to do it? Crack the care.data database. I’m sceptical.”

G             “It’s the lack of guarantee. There is no large, publically administered database that is immune to criminal interference.”

P             “Well you can’t substantiate that I’m sure, but many would agree with you. There is a trust issue that I’ll come to. I’m just wondering though, whether to take a risk to make a point. You’ll be very annoyed with me.”

G             “Try me.”

P             “You’ll forgive me?”

G             “Let’s hear it.”

The open secrets

P             “OK. I wouldn’t insure your life. I know that you have had rheumatoid arthritis since you were 35, that you need a new shoulder joint but are unlikely to get one, that your medication has recently been strengthened, that you require frequent monitoring of your immune system, and that two years you had a cancer scare that required you to stay in hospital for one week.”

G             “Who told you?”

P             “No-one told me anything.”

G             “Then how?”

P             “I was in the GP’s last week. The blood samples were in a plastic basket near the front desk waiting to be picked up. Yours were at the top, and I read the form.”

G             “Why on earth?”

P             “Well I wasn’t going to shut my eyes was I. I looked in that direction, it was in front of me. And it said, ‘RA 30 years, now on Aza.’ I know you are 65.”

G             “And the rest?”

P             “I looked up Aza…it means Azathioprine. Powerful stuff, obviously only recently prescribed as it said ‘now on’. And theyr’e still monitoring you closely on it.”

G             “Yes…and?”

P             “Two weeks ago I went to the hospital, to the out-patients clinic. You were there on the same day, and I was behind you in the queue to check in. The receptionist asked you who you were due to see, and you said Mr Chandler. I know he is an orthopaedic surgeon, and a shoulder specialist. Later I saw you leave – I was sitting in the coffee shop – and you were very down in the mouth. Hence my inference.”

G             “Right little Sherlock aren’t you. And the cancer scare?”

P             “Well, after your appointment you were sent for an MRI scan. I followed you to the radiology department.”

G             “Why?”

P             “To hand in my own x-request actually, but also to prove my point. We had already spoken about care.data. So I stood in line again, and the receptionist there turned her monitor round to point out what availability there was. On the left of the screen, for anyone with half an interest to read it, was your history in that department. You’ve had countless joint x-rays, obviously, but one stood out, a PET scan. They are only really ordered if there is a concern about cancer. And the date on it coincided with the week you failed to turn up at the local history club a couple of years ago. Cancer scare.”

G             “Christ on a bike.”

P             “Sorry.”

G             “You invaded my privacy.”

P             “Privacy! You’ve been in hospital, you know what that word means – nothing! There is no privacy. If I had been in your ward I would have overheard every conversation that you had with your doctors, I would have heard their subdued, concerned tones as they broached the subject of possible cancer. I would have heard them explain the scan result, I would know everything. If you were ill and weak, I would have been aware of your every bowel movement. In the hard end of healthcare, there is no privacy – just a pretence of privacy. You can be quite sure that much of your ‘data’, many of your medical details, were there to be seen when you stayed in hospital, but there was nobody to take note of it, because they had no interest in you as an individual. It’s the same with care.data. It’ll be there, protected quite well probably, but there will be nobody in a darkened room, the blinds pulled down, who wants to scrutinise your contribution to it.”

Justified paranoia, or just squeamishness

G             “Your argument seems based on the assumption that naysayers like myself are either paranoid or have an over-inflated perception of their own importance.”

P             “Paranoia, yes. Perhaps it’s partly to do with the Snowden revelations, PRISM and all that. And there is an overlap. I discovered those things about you with barely an effort. Your data is out there already. Confidentiality is not about what people know, but what they do with the information. It’s like the tree falling in the forest when no-one is there – does it still make a sound? Same with data. Your data could be seen, discussed, interpreted, all day every day for a decade, but it would only affect you, only enter your perception, if it led to a decision that touched you. It’s just like the NSA or GCHQ. I don’t care if they read all my tedious facebook updates unless they come round and make something of it.”

G             “That’s naive. What if you were convening a new, subversive political party…would you feel quite so nonchalant then? Your medical details might become quite valuable. It would be very useful to know you needed insulin three times a day, should you start to cause trouble! It is naive to think that just because you and I are conventional, nefarious agencies will have no interest in picking out individuals’ details and using them.”

P             “But how many of us will ever be so significant as to attract that kind of attention? It’s too fanciful!  And I think the data to be uploaded is a little more cryptic than you might imagine. As I showed with my brief exercise in detection, anything that anyone wanted to find out about you they could discover much more easily by spending a couple of days in the neighbourhood. I have a more challenging proposition to put to you.”

G             “Go on.”

The philosophy of ownership

P             “…You don’t own the data anyway.”

G             “I do. It’s my body.”

P             “No. It’s measurements that have been taken by a doctor, or conditions that have been diagnosed by them. The data wouldn’t exist without them.”

P             “It’s still derived from me.”

G             “By the doctor. And how did the doctor come to be there?”

P             “She’s employed by the NHS.”

G             “Yes, provided through the taxes that you pay.”

P             “I don’t see where you’re going with this.”

G             “The point I’m making is that your is the property of those who find it and compile it, in this case, the state, through the state health service.”

P             “I am the property of the state?”

G             “Your data, yes. Just as the state owns your driving history, your legal history, they know which houses you’ve lived in, what grades you got at school – it’s all data particular to you. What’s different about your medical data?”

P             “It’s more personal. It’s from my body, it’s about what’s in my body.”

G             “Are you sure it’s not squeamishness, or the potential for embarassment? Is it the possibility that someone can read about the episode of psychosis when you were 24, or the erectile dysfunction drug you were prescribed last year- I’m not talking about you, obviously – but in theory?”

P             “Perhaps it is. Medical details are different. They come into existence not because the state employs a doctor or a nurse, but because we choose to go and see those personnel, and trust them with our private concerns.”

G             “So it’s a matter of trust. That’s the essence of it isn’t it?”

P             “Yes. On several levels. The one-to-one trust that allows me to speak to my doctor…”

G             “You know, don’t you, that hospital data is already uploaded. Each episode of care. The week you spent in hospital…that’s in there somewhere. Anonymised. Diagnosis, outcome, your age, your comorbidities. You knew that?”

P             “I did. But this is different. It’s longditudinal, it’s my entire history in primary care. Much more personal. How can you argue that anyone but me can own it? It’s my history.”

G             “I suppose it goes back to Rousseau’s Social Contract. It is the general will that we, the sovereign people, give our government the right and the privilege of choosing how to administer power in our best interests. For our part, we have agreed to make sacrifices, in order to allow the general will to be advanced, such as resisting the temptation to take what we want – that is to behave anarchically, to give up part of our income – taxes, and, I would contend, to give up some of ourselves, in the form of information. Care.data is part of that sacrifice. We may experience a mite of discomfort, we may not enjoy the idea that a part of us resides in a database, but the general will, in this case to live longer, and to benefit from advances in understanding that might occur, outweighs that. The hitherto unrecognised patterns of disease, to be identified, or unanticipated associations between geography or employment or lifestyle and disease, may benefit future generations.”

Those actuaries

P             “Yes, yes, I have accepted the advantages..but my misgivings remain, regarding transparency…motives. It is not the ‘general will’ that insurance companies refine their actuarial tables and maximize their profits…”

G             “Why not?”

P             “Why not! Why would I want them t make more money…from my data? And end up charging me more because I had a cancer scare!”

G             “But you are happy to be charged less for your car insurance than a 17 year old, based on the fact that you are a better prospect than the reckless youth. Is that different?”

P             “Yes.”

G             “And you are happy to pay less for life insurance than a smoker?”

P             “Yes, but…”

G             “It is no different, in essence. They make that calculation because of data. Available data, about who lives and who dies. Cold, crude data that is comprised of numberless individual tragedies. But we need to know it.”

P             “You seem to be an apologist for the state. You seem to have developed great faith in the wisdom of the state, although I seem to recall you opposed the Health and Social Care Act with equal sincerity.  Not so wise all the time it seems. ”

G             “I am vulnerable to the charge of naivety. But yes, I believe that care.data is a good decision, and that after this pause, when the furore has died down, we will reap huge benefits in the years that follow. It’s just a shame they screwed it up so badly, for want of a sensible hand on the tiller, and an understanding of, and respect for, how people feel. Such a shame.”

spokenunspokenPAPER

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