Sharing data is crucial to supporting the future of NHS services, said Kingsley Manning, chair of the Health and Social Care Information Centre (HSCIC).
“A shared NHS is dependent on shared data,” he said, "and until recently it was perhaps reasonable to believe this view was overwhelmingly supported by the general public.”
Speaking during a keynote at the BCS National Health IT Conference (HC2014) in Manchester today, where the running theme was the Care.data debate, Manning said the prospect of sustaining the NHS would be severely diminished if data and technology were not used.
To demonstrate the importance of data in the NHS, Manning pointed to Spine – the infrastructure backbone used by the NHS Care Record Service. Manning said the uptime for Spine is 99.977%, but if it were to experience downtime, the NHS would grind to a halt in about three hours.
“The need for data information to support services is unquestionable,” he said.
Manning said data could improve personalised medicine, work towards the individualisation of cancer treatment, or enable citizens to manage their own chronic conditions.
He said it would also help in redesigning NHS services: “The combination of data and technology constitutes our major hope of making the NHS affordable and sustainable.”
More on Care.data
- Without Care.data “we won’t have a health service for much longer,” says NHS
- NHS England admits failure to explain benefits of care.data
- NHS England puts patient database on hold
- NHS England database raises privacy concerns
- NHS collects patient care data from GPs
- Medical database could undermine privacy, says NHS risk assessment
NHS England announced its plans to expand the collection of patient care data from hospitals to include general practices in January. The plans aimed to improve research on data related to disease and treatment patterns. But failures to properly educate the public resulted in the scheme being put on hold for six months.
The HSCIC, established a year ago under the Health and Social Care Act, is the body which is responsible for collecting patient data. “I’m quite clear that it’s a privilege to share that data, and it’s a privilege we have to earn,” said Manning.
NHS England's national director for patients and information, Tim Kelsey, said the reason the NHS decided to delay the Care.data programme was to give the organisation more time for discussion because it couldn’t guarantee that patient data would be used for the purposes of improving healthcare.
Legislation has recently reached the House of Commons which Kelsey said does provide the statutory guarantee that data would be used for this purpose.
Manning said that prior to the widespread Care.data debates, the public was “overwhelmingly supportive” of sharing data for the greater good of the health service.
He said the public is becoming less trusting of not just the NHS, but a wide range of institutions from the police to banks and big government, following high-profile scandals.
“Large sections of the public fully understand the power of information and have genuine concerns about how their data is used by large institutions,” he said. “And there is a general perception that those institutions aren't very good at keeping your data safe, as evidenced by Edward Snowden and Bradley Manning.”
Over the next few months, the HSCIC and the wider NHS will be announcing new initiatives in areas of transparency, effectiveness and security to reassure the general public about sharing their data.