What does Care.data even mean?

One of the biggest Government U-turns from the last few weeks has been over the proposed scheme to share GP patient records – Care.data

I support the sharing of patient data – I’m more than happy for my anonymous medical records to be shared for the betterment of medical research. But the way it’s been communicated and then defended has been nothing short of a shambles and is the reason for its downfall.

If ever there’s evidence that PR works, it’s in the midst of some serious baktracking on an expensive NHS England initiate after weeks of backlash in the media. Although I disagree with the outcome, this is PR in action in a democratic society.

A nudge too far

Looking at the way it was set-up, Care.data seems to be born out of Nudge theory. The message I took from Sustein & Thaler’s influential book is that people’s decisions can be influenced by the way they are presented to help them make better choices.

To overcome people’s inertia, the book says decisions should have a positive default option – i.e. I don’t have time to think about my pension contributions, so by not filling in the forms I will be rolled on to a default pension scheme that means I don’t lose out. This certainly applies to me.

In the patient data case, the default is to opt-in. I’m not against this.

But Sustein and Thaler also say that to count as a nudge, “the intervention must be easy and cheap to avoid”. This is where Care.data falls down. To opt-out you need to first realise it’s happening either through a non-descript piece of junk mail or a tricky search on the internet.

Then you need to go and speak to your GP.

This isn’t easy, and might not even be cheap.

The way forward
I can see the decision maker’s concern – an easy opt-out by email or clicking a button on a website could mean thousands of people opt out in the wake of the inevitable privacy backlash. 

But by not communicating it properly, it now it looks suspicious. It looks like NHS England has tried to sell-off your patient records to private companies without properly telling you its plans. I’m not sure the programme can recover.

If the Government / NHS England think it’s the right thing to do, then they need to have the confidence they can make the case for this to the public. It requires an above the line campaign, easy interactive online guides, a click of a button to opt out, a coalition of supporters and a robust defence to the inevitable criticism.

Also what does “Care.data” even mean? Who thought of that?

Instead, mounting pressure that reached its crescendo in Radio 4’s survey that found fewer than a third of people remember receiving the information letter, meant NHS England had to delay the scheme.

As Nick Triggle from the BBC said:  When you have a group of bodies as disparate as the British Medical Association, privacy campaign group Big Brother Watch and the Association of Medical Research Charities united in their condemnation, you know you have a problem.

NHS England is now in a tricky position. If they do bring it back, revamped and more user friendly in six months time it’s going to be starting again but with a heavily tarnished reputation. This will be very difficult to turnaround.