Dr Clare Gerada, who was until recently chair of the Royal College of General Practitioners, has written an article for The Times about care.data, stoutly defending the scheme and its benefits for the public. The Times doesn’t give its stories away for free (a stance that they’re perfectly entitled to adopt), so if you want to read the article itself, you’ll either have to subscribe online or buy the newspaper like I did. Accompanying the comment piece is a short article in which she is quoted, perhaps less formally.
The article itself is familiar stuff. “We have nothing to fear” from care.data. Our data will be safe, secure, and used only for “proper and appropriate purposes”. Dr Gerada deserves credit for making clear that identifiable data will be shared outside the Health and Social Care Information Centre: she acknowledges that information will “not be anonymised at all times” because anonymised data only works in a limited number of circumstances. This frankness is refreshing, especially given the fevered Twitter commentary from NHS England’s apparently bewildered National Director for Patients and Information, Tim Kelsey, who still won’t admit that the exchange of a commodity for money is ‘selling’, or that pseudonymised data is identifiable. Only one statement in the comment piece really jars. Gerada describes the care.data leaflet as “asking if we would like to share our data”: we’re being offered an opt-out, and it’s unreasonable to finesse it as being an active choice.
I am also wary of the notion that “Part of the compact to get a universal, free health service is to allow data to be used to monitor diseases, plan services, and look at trends in old and news diseases”. The NHS is not free; it’s just free at the point of delivery. We pay for the NHS with our taxes. Even the poorest pay tax on their weekly shop and the idea that we also have to pay for the NHS with our data is not part of any deal I have ever seen. A much wider debate is necessary on that before we can let that remark slide. Nevertheless, if you want to see the case in favour, Gerada’s comment piece is a well-informed and persuasive rehearsal of the NHS England position. It’s interesting that nobody directly involved in care.data has been able to put the case as fluently and I have no hesitation in recommending it to you.
However if you do read it, permit me to suggest that you read the separate article, and compare what Dr Gerada says when commenting in the Times with what she says on Twitter. She opens her article with the mournful statement that we live in an “Age of Mistrust”. Perhaps one of the reasons is that those we need to trust turn out to have such clunking feet of clay.
Even the comment piece is misleading when put into context. Gerada states that those who do wish to avoid the “very low risk” of re-identification “should be allowed” to opt-out. That’s very generous, except Gerada doesn’t really believe it. On February 3rd, she said on Twitter “I dont think we should be able to opt out – but hey-ho”. She also said on 26th January: here and 25th January: here. There are other similar statements. I can’t find any evidence of a Damascene conversion in advance of her appearance in The Times. Gerada’s comment piece is designed to be reasonable and soothing but her views are actually much less sympathetic to any notion of choice. Should I trust someone who isn’t straight with people about what they really think?
This is bad enough on its own terms, but when you move to the comments in the accompanying article, it gets worse. Gerada is quoted as describing GPs who are opting their patients out unless they choose to opt in as ‘patronising’. She goes on to say that “It is not right for GP practices to make this decision on their patients behalf”. Gerada doesn’t think we should have a choice, but describes those who do as ‘patronising’. It’s an interesting choice of word, as when I used it on Twitter to describe Gerada’s approach to care.data, she responded that she was “just opening up a debate. Will not continue now as clearly wrong”, and later observed that calling people patronising was evidence of “how easy it is to then become personal in the debate- hence squashing further debate.” I shouldn’t call her patronising, but it’s fine for her to smear her fellow GPs with the same word.
Perhaps I overstep the mark if I say that Dr Gerada has a patronising attitude towards her fellow citizens. It may be too much to assert that her article for the Times was hypocritical. It won’t help the ‘debate’ very much if I do. However, how helpful, how constructive is it for Gerada’s to summarise her opponents in this way: The Times quotes her as saying that the act of opting out is ‘selfish, a bit like people who don’t give their kids MMR for herd immunity’. Perhaps you can think of a comment more precisely designed to squash a debate, but I’m dry for now.
Those of us who say no are not simply concerned for our privacy and keen to be given a choice. We’re not even “conspiracy theorists” (which is what she called us earlier this week). We who say no are dangerous. Our decision to opt-out actively puts our fellow citizens at risk. Like Tim Kelsey’s loaded statement on the Today programme earlier this week that those who “do not trust the NHS” to protect their data can opt-out, Gerada’s comments on Twitter and to the Times journalists shows where we’ve got to: Us Versus Them, NHS Fundamentalists versus paranoid heretics. We’re through the looking glass, as one wise person put it to me, and now all that matters is faith. Do you believe in the NHS, or are you against it? All I need to do is finish my blog with a hysterical word like totalitarian or fascist – with due respect to Mike Godwin – and it just gets worse.
Like everything I have written on this subject both here and on Twitter, I doubt it will have any effect on your view of care.data. Either you already agree with me, in which case you will be even more convinced, or you don’t, and you will complain that I am making a personal attack on a respectable, dedicated public figure (needless to say, I have no doubt that Dr Gerada is a respectable, dedicated public figure, which is why I find her view of people like me so depressing). I cannot think of a single issue in my professional life that I have found more dispiriting than looking at this one. It’s become toxic and divisive. They don’t respect or trust Us, and We don’t respect or trust Them. There’s no hope of a resolution.