Care.data collection plan to be tested by GPs
Kelsey promises collection of patients' data will get 'stakeholders' input "to help ensure that, together, we get the approach absolutely right"
NHS England's National Director for Patients and Information, Tim Kelsey, wants to phase the introduction of the organisation's controversial data collection plan by working with between 100 and 500 GP practices to test, evaluate and refine the data collection process ahead of a national roll out.
In a blog post published just before the bank holiday weekend, Kelsey said that in February, NHS England announced a six month extension to the start of care.data "so we could ensure stronger safeguards around the uses of the data, clarity about the rights people have to opt out, and that appropriate, accessible information was available for professionals and the public."
He added, "Since then we have been listening to the views of patients, the public, GPs and stakeholders on how best to build trust and confidence in this project."
Kelsey indicated that an important development has been to establish a Care.Data Advisory Group chaired by Ciaran Devane, chief executive of Macmillan Cancer Support and a non-executive director of NHS England.
Kelsey said, locally, stakeholders, including GPs, patients and public, health and care representatives, are taking part in debates and workshops "to air their views and help ensure that, together, we get the approach absolutely right."
"In light of all these conversations, we are now proposing to phase the implementation of care.data and work with between 100 and 500 GP practices in the Autumn to test, evaluate and refine the data collection process ahead of a national roll out. We do not subscribe to artificial deadlines here - we will roll it out nationally only when we are sure the process is right."
Kelsey said the government has already acted to put before Parliament legislative proposals that mean all uses of the data will be subject to robust independent scrutiny and that no uses will be permitted that are not for the benefit of patients.
"An organisation that wanted to handle the data on its own premises would need to demonstrate it could safely do so, or risk being barred from doing so.
"In all cases, there will be complete transparency of all those permitted access to this data by the Health and Social Care Information Centre and for what purpose. In this way patients will know how their data has been used for improvement of services."
Kelsey added, "We cannot improve the safety of patients, and the quality of their care without understanding what happens to them. Data sharing has the power to transform health services.
"Care.data is an integral part of this vision. It's a programme of work which aims to consistently and systematically use and join up data across hospitals and general practice and make it available to the people who can use it to make services better - clinicians, commissioners, researchers, charities, patients and public - in safe ways that minimise the risk to a person's privacy being compromised in an age of increasingly sophisticated digital threats."
"Data empowers commissioners to ensure the highest standards of care and clinical safety are met - or shout loudly and respond quickly if standards drop. Data can tell us what happens to people cared for outside of hospital and whether their needs are met, or not. Data supports researchers to develop new medicines and improve our understanding and treatment of disease."
In February, NHS England has put back its plan to share data from people's medical records. It followed a series of concerns from both patients' and doctors' groups and from individual GPs over the plan.
The original plan would have seen medical records being shared from the start of April.