A number of major charities including Mencap, the RNIB, the National Autistic Society and Action on Hearing Loss, have written to health secretary Jeremy Hunt expressing their ‘deep concern’ that some people with disabilities are not receiving the information they need about the care.data programme.
And they have demanded that ‘further support’ is provided so that all GPs can inform their patients of the implications of the care.data scheme in a way that they can understand.
The charities’ letter says ‘inadequate provisions have been made to target people with a learning disability, autism, or sensory impairments’ to ensure they are informed about how care.data could affect them.
The charities warn the use of pseudonymised data could lead to an increased risk of patients being identified. This risk is likely to be even higher for patients with complex conditions that these charities represent.
Earlier this month the RCGP called for a major public information campaign to ‘properly inform’ the public about the care.data scheme.
The college warned that the public did not know of the scheme’s benefits, nor of their right to opt out. And it said the future of the scheme could be at risk if communication with the public was not improved.
Responding to a written parliamentary question, health minister Daniel Poulter said NHS England was monitoring a sample of households to evaluate the success of the ‘Better information means better care’ leaflet on care.data, which was sent to all households in England. He said this would include asking householders whether they recalled receiving the leaflet and how much of it they read.
Replying to another question, Mr Poulter said no figures were yet available on the number of people who had opted out of sharing their data under the care.data scheme. He said this was because no data had yet been extracted.
A spokesperson for NHS England said: 'We take our communications seriously and we are constantly looking to improve the accessibility of them. We welcome the offers of support from charities and are in discussions about how we can work more effectively with them to ensure we are communicating in accessible and understandable ways that help people to make informed choices.'