According to leading doctors, patient records must only be extracted and added to the system with their “explicit and informed consent.”
The General Practitioners Committee (GPC) has said that NHS England must abide by the findings of a pilot of around 100-150 practices that will look at patient awareness of the programme and data quality.
The news has been welcomed by doctors and members of the Local Medical Committee (LMC) – which claims data must also be pseudonymised or anonymised before leaving a practice.
LMC is a group of local representatives for NHS GPs, working with the GPC at times to represent their interests.
At an LMC conference, it was insisted that patient information should not be sold for profit and only used for the purposes of “improving health and care delivery.”
In an interview with UK healthcare publication Pulse, Dr Beth McCarron-Nash, a GP in Truro and GPC negotiator, claimed Tim Kelsey, NHS England director for patients and information, would be informed of the results of the conference.
She said that a poll at the conference has revealed “overwhelmingly” that patients have a right to say what information is released via care.data.
“The public and doctors have lost confidence in care.data, and any perception of good has been lost because of their absolutely diabolical information campaign, which was actually just a disaster,” claimed Dr McCarron-Nash.
The initial go-live date for care.data was delayed by six months earlier this year, following complaints that the public had not received enough information about the scheme.