Some GPs are opting their entire patient populations out of the care.data personal medical record-sharing programme, Healthwatch England reports.
NHS England pledged that all 26.5 million households in England would receive, by end-January, a leaflet explaining how it is upgrading its data systems and what people should do if they have any questions or concerns.
However, on February 6 consumer champion Healthwatch said people are still “largely in the dark” about the programme, and unable to make an informed decision about whether to opt out or not.
Local Healthwatch networks have raised a variety of concerns, it says. In some areas, the leaflets have still not been delivered, while some that have are branded junk mail and thrown them out “along with the pizza menus,” and a purely print-media campaigns creates serious problems for people with sight, learning and other issues
Also, the information provided so far has been unclear about exactly what personal data will be shared and who it will be shared with, says the group.
And not even the GPs responsible for registering whether or not people wish to have their data shared seem to be sure about how the system will work, it adds. Some surgeries are asking patients to fill out officials forms to opt out, others are simply taking messages over the phone, and one even asked a woman if she wanted to opt-out her husband, raising serious questions about who has the right to make the decision, it reports.
“Local Healthwatch in Cambridgeshire and the Northwest have also told us that some GPs are reportedly opting out their entire surgeries, once again denying their patients the right to choose,” it adds.
The plans should have been discussed more widely in advance rather than being presented to the public after the decision to share the data had already been made, it says.
“The communications around this have been so poor that we are now in a situation where all of us are about to be automatically opted in to a scheme we know little or nothing about,” adds Anne Bradley, chair of Healthwatch England.
“Whilst we recognise that sharing the data could be of significant benefit to researchers, the NHS has a moral duty to consult with all of us and trust us to make our own decisions,” she said.
Given these concerns, Healthwatch says it has written to NHS England CEO Sir David Nicholson, “urging him not to rush this initiative through in his last few weeks in charge, but to delay the April 1 deadline and step up efforts to explain in plain English exactly how it will work and why it is of benefit to patients.”