NHS England acts in response to concerns about information sharing – statement from Tim Kelsey, National Director for Patients and Information

The Care.Data Programme closed in 2016

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.

They have also told us that they understand why sharing of information is really important to help improve our understanding of what works best for patients and what doesn’t work so well. We thank them for their comments and support.

The programme will benefit patients 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;
  • providing us with the vital information needed to assist and support research into new medicines, and the better treatment of disease.

To ensure that the concerns of the BMA, RCGP, Healthwatch and other groups are met, NHS England will:

  • Begin collecting data from GP surgeries in the Autumn, instead of 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;
  • Work with patients and professional groups – including the BMA, RCGP and Healthwatch – to develop additional practical steps to promote awareness with patients and the public, and ensure information is accessible and reaches all sections of the community, including people with disabilities;
  • Look into further measures that could be taken to build public confidence, in particular steps relating to scrutiny of ways in which the information will be used to benefit NHS patients;
  • In the meantime we will work with a small number of GP practices to test the quality of the data. This will be voluntary.

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.”

Anna Bradley, Chair of Healthwatch England, said:

“This is a really positive move by NHS England. They have shown a willingness to listen to what the public have to say about the way their health and care services are run.

“Crucially they have agreed to Healthwatch England’s request to see the roll-out of delayed to allow more time to ensure the public are fully informed. Over the coming months the Healthwatch network will continue to play a key role listening to the concerns of local communities, helping to inform them about what’s happening and working with NHS England to improve their communications with the public so each of us can make an informed decision.”

Professor Nigel Mathers, Honorary Secretary of the RCGP, said: “We would like to thank NHS England for listening to the concerns of RCGP members and for acting so quickly to announce this pause. The extra time will provide it with the chance to redouble its efforts to inform every patient of their right to opt out, every GP of how the programme will work, and the nation of what robust safeguards will be in place to protect the security of people’s data.”