Data driven NHS 'will improve care for everyone'

Published on Tuesday, 04 March 2014 13:21
Written by Daniel Mason

The man tasked with convincing the public of the merits of the health service's medical records sharing project has insisted that the NHS must be "intelligent" and "data driven" if it is to improve.

Tim Kelsey, national director for patients and information at NHS England, said today that the troubled Care.data scheme was about "improving the quality of care for everyone" in the country.

But he acknowledged that up to now attempts to communicate its purpose to the public "weren't good enough" and the mistakes made had been a "real learning experience".

Last month NHS England delayed the launch of Care.data by six months until the autumn, after widespread criticism that the public was not sufficiently informed about what it meant or how to opt out.

Research by the Royal College of GPs found that, of 2,000 adults surveyed, two thirds felt the public was not well informed.

When it is eventually implemented, the database will enable the sharing of partially anonymised patient records from hospitals and, for the first time, GP surgeries, which NHS England has maintained will help improve services, pinpoint errors and support research.

Under Care.data, the Health and Social Care Information Centre will extract people's NHS number, date of birth, postcode, ethnicity and gender. Organisations such as university research departments will be able to apply to access the information, scrubbed of some of the personal identifiers, for a fee.

NHS England has rejected claims that the data might be sold to private interests such as insurance companies for purely commercial gain, saying that would not be allowed.

In the wake of the criticism, the health secretary, Jeremy Hunt, has proposed amendments to the Care bill to better protect privacy, and to block any organisation that misuses the data from ever applying for access again.

Nevertheless Kelsey, speaking at the NHS Health and Care Innovation Expo in Manchester, said the issues raised by critics around the security of personal data were "proper, real concerns" and that the debate was one that should have been had "a long, long time ago".

He said that, while he was happy to take criticism for the way Care.data had been communicated, the country needed an "intelligent, data driven NHS" in the 21st century.

"We've been using hospital data with important effect without people knowing," he said. "My message is we have to make this work and we are going to make this work."

"We are going to guarantee that people's data is safe. We are going to have a proper public conversation."

On the same panel, Dr Tony Callard, chairman of the British Medical Association's medical ethics committee, welcomed the six month delay as "eminently sensible" and said there were two key principles at stake - patient confidentiality, versus the need to use data to learn and improve.

He claimed the debate about the database had been "perpetrated through the media with little fact" and it had not been made clear enough to people that their information would be anonymised.

While supporting Care.data, he added that it was "vital" that public trust in patient confidentiality was not eroded, because if it were then people would not necessarily tell their doctors the truth and the data would be corrupted.

The health commentator Roy Lilley, also on the panel, said data was the "foundation of quality".

He said it was always possible that a "hacker in their garden shed" would be able to access data and misuse it, but the benefits for patients of using the information far outweighed the risks.

All the speakers were in favour of the Care.data project. Sarah-Jane Marsh, chief executive of Birmingham Children's Hospital, argued that it was time to challenge the idea that security should always trump patient safety. "We can’t just assess the risk of doing something; we must also assess the risks of not doing something," she said.

"We must help people understand that this is not something we should just do for ourselves. In my mind, we must do this to help the generations of the future."

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