the con that is #caredata – not the idea, the implementation

I’ve been discovering a bit more around a government initiative I first wrote about back in 2011.  A flavour of what I said a couple of years ago (recently republished to a wider audience here):

So this is my battlecry – my condition in a nutshell.  If you want to share private patient data with private corporations:

  1. open source it, so all kinds of life science organisations can freely take advantage of its virtues and in benefit of their research; and
  2. impose on all such corporations and organisations (as well as all subsidiaries and related institutions) a watertight obligation to release into the public domain all research conducted from the moment they receive any such data

If we’re really looking to improve the patient experience, Mr Cameron should really have no problem with this.  And, conversely, if he finds the idea at all resistible, then his motives are clearly not as focussed on patient needs as – perhaps – they actually ought to be.

And this:

Now, if Cameron doesn’t act on my demands (unlikely I grant you but – even so – still a remote possibility) I will only be able to conclude that instead of looking to open our society up in one humongous step forward of data liberation, he’s actually more interested in trafficking, economically speaking, in highly sensitive personal records – and with the obvious aim of further lining the already deep pockets of his corporate sponsors.

Meanwhile, this morning an exchange over at my Twitter account @zebrared brought this piece of information to light via Neil’s useful tweet.  As you can see, if you don’t opt out in the window of opportunity that is January to March 2014, pretty essentially you can never opt out.  The two questions I posed yesterday, then, for you and anyone in the government still interested in the detail of implementation this far down the line:

.@PaulbernalUK Had two questions on this:
1) How can we check we’ve been opted out?
2) How do they unsell our data if we opt out later?

And this observation:

@docneilb What if I’m currently a child, & later disagree with my parents’ decision not to opt me out? Saying I’ve no choice? @PaulbernalUK

Having to conclude:

So. If you don’t opt out your child from #caredata now, they themselves will never be able to unsell or un-opt-in their data when adults.

Not to mention any newborns from April 2014 onwards, and whether there is a default procedure properly in place or not to automatically ask parents whether they want their children to have the same 2014 choice, when they themselves eventually become adults in a couple of decades’ time.

This does, in fact, beg the question whether any of this is in accordance with overarching data protection legislation.  As I also observed:

A dreadful situation. Leaving #minors totally defenceless in #dataprotection terms. If the case, I can’t disagree more strongly. #caredata

The number of questions, then, that the implementation of a supposedly open-data project with massive and potentially positive implications for patient care in the future actually raises for someone like myself, manifestly uncoached in most of the detail and the institutions involved, surely leads one to suspect that the reality is far worse than the half-hearted landscape I’ve painted reluctantly above.  So many loose ends; so much riding on an uninformed public choosing data-protection options on behalf of so many others – and in some cases, when such others are not even born!

It’s clear to me that we have just one more example of a government which has consistently claimed to believe in the blessings of big biz – and yet, equally consistently, is manifestly incapable of choosing from the raft of good business practice out there.

Poor change management coupled with minimal attention to detail, matched by an utter disrespect for the sanctity of personal data and the professional confidentiality of GP-patient relationships, has led to a situation where a massive opportunity to take a singular step forward in the public’s understanding of the virtues of open data and a sharing economy has been totally wasted through a dreadful implementation.

That’s the real con that is #caredata today.  The hubris of a government which really couldn’t care to get anything right.

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