A massive scheme to create an England-wide database of medical records, which has been heavily supported by many research groups, has been delayed today amid concerns from patients and controversy over how they can opt out.
The care.data project would have collected patient data from English general practitioners, who currently hold it locally, in a central system that would eventually have been accessible to medical researchers. Research charities have thrown their weight behind the project, and wheeled out a public-relations campaign in support of it last year, saying it would help epidemiological studies into the causes and treatments of diseases.
But today the organization in charge of the project — NHS England — announced that it would not begin the data collection until next autumn, instead of April, to allow more time to ensure the public know how to opt out.
“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,” said Tim Kelsey, national director for patients and information at NHS England, in a statement. “That is why we are extending the public awareness campaign by an extra six months.”
Nature has previously expressed support for this scheme, while voicing concerns over the consent and opting out (see the editorial ‘Power to the people’). Some patient groups have criticized the lack of information available on how to opt out of the database. Flyers are supposed to have been sent to every household in England, but some people report not having received them.
Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities, one of those groups behind the supportive campaign, said in a statement: “Care.data is a good idea currently stymied by its execution”. She added, “NHS England need to use the next six months to talk to them about their plans and why this is an important asset for all of us.”
Nicola Perrin, head of policy at the London-based Wellcome Trust — another charity supporting care.data — also welcomed the delay. She said in a statement, “Sharing information from medical records has huge potential to drive progress in medical research and healthcare delivery, but systems for achieving this need to be trusted and understood by everyone.”