The Care.data programme will push the NHS towards a consent-based model of data sharing by 2020, but 100 per cent security of patient information can’t be guaranteed, Tim Kelsey, NHS England’s national director for patients and information, has admitted.
Kelsey was presenting a keynote session titled “The importance of unleashing the power of e-health” at the UK e-Health Week event at London Olympia. He also admitted that there are ethical issues to be considered surrounding Care.data, the controversial data-harvesting programme that has faced a lot of opposition.
“One of the core work streams in the national framework is trust. So one thing that is fundamental to the success is trust between the patient and their healthcare professional,” Kelsey said. “What we need to do now is investigate, with real clarity, just what the consent arrangements are going to be in terms of the digital services.”
However, despite concerns about consent and sharing of personal health information, Kelsey told the audience that the NHS aims to push on with the data-harvesting scheme.
“Government policy is clear, which is by 2020, the NHS, particularly in relation to data sharing, will be fully consent-based,” Kelsey said. “To get from where we are now to that point is a big journey for all of us, with some considerable ethical issues to be discussed.”
Kelsey said that people need to be fully informed about the scheme and how technology is used to collect data, in order to allay any privacy fears about opting in.
“We need to have a very big conversation about what that means in practice, how technology can enable people to have proper consent for where their data is shared,” he said.
“In terms of security, we need to ensure that we’re doing everything we can on the cutting edge of science to build a secure environment for data sharing,” Kelsey said, but added that no data-sharing system could ever be totally secure.
“But we can never be 100 per cent guaranteed [on security]. But we live in a world where we have to do our very, very best,” he said.
Kelsey has previously argued that by adopting Care.data, the NHS will be able to fill “dangerous gaps” in the healthcare service it provides.