NHS England said it would work to ‘build public confidence’ after delaying the care.data scheme in February. After eight months of deafening silence, we finally know what they intend to do.
Managers are to test whether GPs sending directly addressed letters, a leaflet and ‘other explanatory materials’ – as well as emails and texts – wiill result in patients understanding the scheme to share data from patient records better.
The hope is that GP practices will do better than the official publicity programme run by NHS England earlier this year, which conspicuously failed to explain to the public what the scheme would entail.
It is good to see that a DES is being proposed to fund these efforts and that the BMA and the RCGP have been involved in the development of these pilots. But why is it GPs’ job to sell care.data to patients?
Surely, NHS England must be the one to address the original concerns over the way the scheme is being handled.
For instance, why is the scheme still opt-out only? For many, including the BMA, this is a crucial feature of the scheme that needs changing.
There is no mention of whether patient data will be anonymised at source, or what steps will be taken to reduce the – admittedly small – chance that patients will be identified.
Who are the intended recipients of data from the scheme? The scheme lost support after it emerged that private companies were going to be asked to pay as little as £1 to access data and that it emerged that patient data was used to set health insurance prices.
In May, the Care Bill did include provisions that a person’s data can only be shared and analysed when there is a ‘benefit to healthcare’ and access to data under the scheme is currently restricted just to commissioners. But papers released by the Health and Social Care Information Centre reveal it is pushing to have this broadened so that third parties such as researchers, universities, charities, think-tanks and data analytics companies can all have access to care.data. Where will this all end?
A ‘benefit to healthcare’ could cover a multitude of uses, including commercial companies using data to develop products they can make a profit from, and Pulse recently revealed that NHS England was looking at including sensitive patient information in extractions. There is a sense of ‘mission creep’ around the programme.
NHS England must address all of these concerns, if it is to show really has listened. Patient trust is a fragile thing, and GPs will be quite rightly wary of taking part in what is (so far) looking like a PR exercise trading on their relationship with patients.
There is no doubt that there are potential benefits from care.data. It has to be a good thing to have comprehensive data in order for commissioners to plan local health services and researchers to look at real-life use of treatments and interventions.
But many important questions remain unanswered.
Nigel Praities is editor of Pulse
