Lis Evenstad writes for EHI magazine:
A leading privacy campaigner has condemned NHS England’s £1m leaflet drop about care.data for not including an ‘opt-out’ form.
Phil Booth, co-founder of the medConfidential campaign, told EHI that the leaflet, which is supposed to inform patients about the programme and advise them that they can opt-out, said the failure to include an easy way for them to do this was “ridiculous”.
“There’s no opt-out form in the leaflet. This is ridiculous. If you’re going to send out this you have to include an opt-out form,” he said.
The leaflet drop is part of a £2m public awareness campaign being run by NHS England and the Health and Social Care Information Centre about care.data, which will expand the Hospital Episode Statistics and link them to other healthcare data sets, starting with information extracted from GP practices.
An estimated 22m homes will receive a leaflet called ‘better information means better care’ through their mail box this month. The leaflet drop was forced on the two organisations after GPs raised concerns about consent and confidentiality.
However, the bulk of the text focuses on the benefits of the new service, and the leaflet says relatively little about the right to opt-out.