NHS England has responded to rising criticism over its plans for a centralised patient record database by postponing the care.data programme for six months.
It follows protests from patients, doctors and privacy groups over plans to extract patient record information from GPs’ surgeries to a centralised database, from where it could be sold to pharmaceutical companies, researchers and other organisations.
Those protests were capped by a call yesterday by the British Medical Association to suspend the programme until people were better informed about it – and given more time to opt out, if necessary.
Now, in a statement, NHS England has suspended the data extraction programme. “In recent weeks, we have heard from patients, many GPs, their professional organisations and, groups like Healthwatch.
They have told us very clearly that patients need more time to learn about information sharing, the benefits and their right to object,” claimed the NHS England statement.
It promises that the data collection process will now start “in the autumn” instead of in April “to allow more time to build understanding of the benefits of using the information, what safeguards are in place, and how people can opt-out if they choose to”.
NHS England claims that it will use the time to persuade people that the care.data programme is in their best interests. It and researchers claim that the patient data can help to uncover medical or health trends, and identify people that may benefit from new or special treatments.
The care.data programme will benefit patients, it says, by “ensuring the highest standards of care and clinical safety are consistently met throughout the NHS and alert us to where standards drop, allowing us to take prompt action; helping us understand what happens to people, especially those with long term conditions, who are cared for away from hospital, and to ensure their needs are met; and, providing us with the vital information needed to assist and support research into new medicines, and the better treatment of disease,” claimed NHS England in the statement.
NHS England says that it will work with patient and professional groups to develop awareness across all sections of the community, particuarly among patients with disabilities; take further steps to build public confidence in the plan, and to work with a small group of GP practices to “test the quality of the data”.
“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,” said Tim Kelsey, national director for patients and information at NHS England.