Tim Kelsey, national director for patients and information for NHS England, has issued a statement in response to concerns about information sharing, saying, “In recent weeks, we have heard from patients, many GPs, their professional organizations 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.”
He continued, “They also have 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.”
Kelsey said the care.data program will benefit patients by ensuring the highest standards of care and clinical safety are consistently met throughout the NHS and alert it when standards drop, allowing NHS to take prompt action; understand what happens to people, especially those with long-term conditions, who are cared for outside of a hospital, and ensure their needs are met; and provide the vital information needed to assist and support research into new medicines and better treatment of disease.
To ensure concerns are addressed, NHS England will:
Begin collecting data from GP surgeries in the fall, 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;
Work with patients and professional groups 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 further into measures that could be taken to build public confidence, in particular steps relating to scrutiny of ways the information will be used to benefit NHS patients.
Kelsey 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. They have agreed to Healthwatch England’s request to see the rollout of care.data delayed to allow more time to ensure the public is 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.”
