Contributing to society?

Why are proponents of care:data resorting to rudeness about those who are not as convinced as they are?

When I attended the launch of MedConfidential in April of this year I was largely ignorant of the proposals to amass patient data by the Health and Social Care Information Centre (HSCIC) under the banner of care:data. I was concerned by what I heard, and I remain so: details were unclear and in many cases remain so, regarding what data will be gathered, and how, and for what purposes, and what arrangements will be to allow third party access to it, and whether or to what extent it will be anonymised, and whether patients’ consent will be sought, or assumed, or ignored.

What I did see, and was greatly impressed by, was a large group of people, from various backgrounds and roles, coming together, mostly on a purely voluntary basis (for instance, I took a day’s leave to attend), to discuss the implications of this.

The centralising and use of patient confidential data raises questions of profound importance, which don’t have easy answers: such as to what extent should people waive an expectation of privacy in order – for instance – to further medical research? These are issues which led two of my favourite bloggers to come to (digital) blows recently.

Yet earlier today I read an otherwise sensible piece on the subject (I am not saying I agree with it) by the high-profile columnist Polly Toynbee, which talked about her receiving letters from people who ask her to

investigate the dark forces planting cameras and microphones in their walls: they think I’m part of the conspiracy when I suggest this is a usually curable delusion, and their doctor is probably not part of the plot

I fail to see the relevance of this reference to people with a diagnosis of apparent paranoid schizophrenia, unless it is to draw an analogy by insinuation with

those not clinically ill [among whom] there is a growing trend to fear Big Brother and the state

This is nasty stuff, and leads one to wonder why she feels the need to resort to such a rhetorical device.

Someone who liked Toynbee’s post was Tim Kelsey, NHS National Director for Patients and Information, and former government “czar” for Transparency and Open Data. He described it as “seminal” on twitter. I’m sure Tim finds the constant questioning of the care:data plans irritating: his tweets are often replied to by people who are not as convinced as he is that it is unequivocally a Good Thing. An example of this irritation was his response to an observation by Calderdale councillor James Baker. James tweeted, in response to Tim’s “seminal” tweet

I don’t think using people’s data for research purposes without informed consent is ‘good for science’

This is unexceptional, and a fair comment. Tim’s reply* was certainly not

you can object and your data will not be extracted and you can make no contribution to society

I think that to suggest that someone who might object (in the context of a worrying lack of, er, transparency, about the details of care:data) to the extraction of their highly sensitive medical data is making “no contribution to society” is extraordinarily unfair, and, as James pointed out in reply

It’s an offensive thing to say to an elected representative who contributes a lot to society…It’s also using trying to use guilt and shame to persuade someone to partake in medical research. Unethical

I couldn’t agree more.

UPDATE:

*It appears the tweet has now been deleted. Tim did reply to James saying

offence not intended – I meant contribution to health improvement thru sharing non PID

but there’s been no explanation or apology for that original tweet