NHS England has postponed kick off of the care.data campaign in order to give patients more time to learn about information sharing.
The data extraction of patients’ medical records will be delayed for six months, until this autumn.
The Royal College of General Practitioners (RCGP), patients and groups such as Healthwatch have complained over the past few weeks that NHS England’s campaign to inform patients has not been sufficient.
NHS England claimed to have sent leaflets to every household in England with information about the campaign.
However, a survey commissioned by the Medical Protection Society revealed that most people (67%) say they have not received Better information means better care.
And 45% do not understand care.data from what they have read.
NHS England has pledged to work with patients and professional groups to develop additional practical steps to promote awareness of the scheme.
The organisation will also look into how public confidence can be built, and work with a small number of GP practices to test the quality of the data.
The British Medical Association (BMA) said the delay in rolling out care.data is in patients and GPs “best interests”.
Dr Chaand Nagpaul, chair of the BMA’s GP committee, said: “With just weeks to go until the uploading of patient data was scheduled to begin, it was clear from GPs on the ground that patients remain inadequately informed about the implications of care.data.
“While the BMA is supportive of using anonymised data to plan and improve the quality of NHS care for patients, this must only be done with the support and consent of the public, and it is only right that they fully understand what the proposals mean to them and what their rights are if they do not wish their data to be extracted.”
RCGP honorary secretary Professor Nigel Mathers said: “The College has supported the principles of the care.data initiative from the outset, as we believe that it will help the NHS improve the quality of care for patients and to better prepare for outbreaks of infectious disease.
“However, the lack of information and awareness led to a crisis of confidence among patients and a lack of clarity for GPs about what safeguards would apply.”
Tim Kelsey, national director for patients and information at NHS England, said: “NHS England exists for patients and we are determined to listen to what they tell us.
“We have been told very clearly that patients need more time to learn about the benefits of sharing information and their right to object to their information being shared. That is why we are extending the public awareness campaign by an extra six months.”
