Kelsey: lives ‘ruined’ by lack of data

People's lives are being “ruined” by the NHS' inability to join up patient information, according to NHS England's Tim Kelsey.

Speaking at EHI Live 2015, in one of this final speeches before leaving for a new job in Australia, the national director of patients and information told the story of a mother of a child with learning difficulties.

He said she had to give up her job as a nurse partly because of the time it took to transfer her child's care between different parts of the health system.

“The one thing she said to me was; ‘Will you please make the NHS remember who I am’ – and I have not achieved that,” he said.

“We have said we will achieve it by 2020 – but every day that passes people's lives are being ruined by the experience of engaging with our most valued institution, this health service. That is a deficiency of the pace of our technology adoption.”

Kelsey used the speech to set out several technology priorities for the NHS to focus on following his departure at the end of the year.

Near the top of his agenda was the need to lose “anxieties” about maintaining distinct parts of the care system and to move to deliver care collaboratively. To support this, Kelsey said interoperability was “fundamental”.

“What we must not do is what the Americans did, which is build fantastic electronic hospitals in the sky – and not the ability for them to speak to each other.”

Kelsey said that Dr Robert Wachter, author of 'The Digital Doctor: Hope, Hype, and Harm at the Dawn of Medicine's Computer Age', had been appointed to lead a review into how the UK can “avoid the pitfalls of digital screw-ups.”

Kelsey apparently caused some controversy at another show, Healthcare Efficiency Through Technology, last month, when he was asked about problems at Cambridge University Hospitals NHS Foundation Trust.

It has been put into special measures because of financial problems and issues caused by its implementation of the Epic electronic patient record as part of a bigger eHospital project.  

In response, he said that EPR providers had not always done enough to work with clinicians to make sure their systems were ‘fit for purpose.’

At EHI Live 2015 this morning, he stressed that he had “nothing against” big EPR providers and that small tech companies also had a contribution to make. But he also said that large technology projects remain a “tremendous risk”.

Responding to a question from the audience about how to make regulators such as Monitor understand this, he added: “People have got to be able to take risks.

“Mistakes will be made and we need to work out how as culture we don't punish people who make honest mistakes.”

The current framework within which NHS IT is working is the ‘Personalised Health and Care 2020’ strategy that was issued a year ago in response to the ‘Five Year Forward View’ plan to make sure the NHS can close a £30 billion funding gap by the end of the current Parliament.

Kelsey has argued that investing in electronic health records, new digital channels, and data can make a major contribution to 5YFV savings. NHS England has submitted a £3.3 billion – £5.6 billion bid to the Treasury to support these plans.

In the meantime, trusts are being asked to complete a ‘digital maturity index’ self-assessment and clinical commissioning groups are being asked to draw up digital roadmaps by next April.

Kelsey said the roadmaps would “enable a much more transparent dialogue about the nature of risk that health economies take.”

Other priorities mentioned by Kelsey included the need to engage with clinicians, the need to introduce free wi-fi across the NHS entire estate, and the need to work with mobile providers to tackle the “appalling situation” in which rural societies can't access 3G.

He said the NHS also needs to engage with the public to gain their trust that the NHS will use its data responsibly in data gathering projects such as care.data; the struggling programme to extend the Hospital Episode Statistics, link them to other data sets, and make them available to researchers and companies.

“We are in a digital age; we can't guarantee the security of people's data,” he said. “We need to be extremely careful about how we promote the opportunities of digital while making sure we do have the appropriate safeguards for confidentiality, privacy and so on.”