NHS England has announced that it is postponing the care.data programme. Announcing that the first data extracts from GP practices have been put off until “the autumn”, its national director of patients and information, Tim Kelsey, said it has “listened to patients” and will now spend more time explaining the scheme and how to opt out.
The commissioning board has had little choice but to “listen to patients” since the voices raised against the scheme have become a carcophany over the past few weeks, as I outlined in this analysis piece for EHealth Insider.
But it’s the actions of the professional bodies representing doctors that will have forced NHS England’s hand. The British Medical Association has always been wary of the scheme, and forced the commissioning board to run the leaflet campaign that has proved so disastrous. Now the Royal College of General Practitioners has come out against the programme as well.
The RCGP had a change of leadership recently, and is now headed by Dr Maureen Baker, who knows an awful lot about IT, having worked for the former NHS Connecting for Health, where she set up a programme for regulating systems and apps.
Last week, the college issued a striking press release, warning that the row over care.data was causing a “crisis of confidence” among the public. Now, it has published a letter telling NHS England to meet six demands. These include making a commitment not to sell data, being clear about who will get identifiable and lightly anonymised (pseudonymised) data, a full blown media campaign, and a “personalised” letter to everyone whose information might be included.
Similarly, MedConfidential, the privacy campaign outfit that appears to have been on the point of launching legal action against the scheme, has said a proper information campaign must be run.
So no more platitudinous language pushing benefits and glossing concerns, no more flimsy and badly designed leaflets, no more junk mail drops that mean most people miss the flyers or mistake them for pizza offers, and a proper opt-out form.
It’s safe to say that NHS England won’t want to do any of this, if only because it will delay the programme, and cost it a lot of money; the present campaign was slated to cost £2m. But it’s hard to see how it will get away without doing anything less.
The more interesting question may be whether it will use its enforced “pause” to rethink some key aspects of care.data, such as whether it is structured the right way, whether pseudonymisation at source could be made to work if it is, and, even, whether asking people to use their data is really as “impractical” as has been claimed. Probably not…