Move to implement patient ‘data lake’ scheme

NHS leaders will “rapidly move to implement” a new NHS patient “data lake” scheme after consulting experts and industry, the NHS’ top CIO says.

In a letter, obtained by Digital Health News, NHS England’s chief information officer Will Smart said he had received 45 responses to the proposed scheme.

The responses came from attendees at the Interoperability and Population Health Summit, which Smart convened in December.

The 60 attendees included NHS CIOs and CCIOs, academics, and representatives from tech companies, including Google Deepmind, Microsoft and IBM.

At the summit, Smart proposed an NHS patient data collection system that would devolve responsibility to regional areas, likely modelled on the STP footprints.

A draft summary of the summit said these regional schemes would then feed into national “data lake”, where data sets could be matched and shared both “pseudonymised of identifiable” for research purposes.

In his letter, Smart said the summary would be updated to reflect the feedback.  Both the responses and the updated summary would then be published “in the spirit of transparency”.

“It is my intention that, following publication, we rapidly move to implementation,” the letter said.

“Thank you again for your comments and I look forward to working with you as we drive this agenda forward.”

The new data lake scheme marks the first concrete proposal to replace elements of the care.data scheme, which was scrapped in July last year amid public and clinical concerns about privacy.

Responding to the "data lake" proposal, Phil Booth, of privacy group medConfidential, said NHS England was clearly trying to build a successor to care.data and "thinks no-one will notice or object".

“It seems no form of intelligence has considered the dangers in this.”

The care.data programme was first approved in 2012 as an ambitious project to expand the Hospital Episode Statistics and to link them to other data sets, starting with GP data, and to make this available to researchers and others.

The government has not consulted the public on the replacement for care.data, although it has been consulting on the Dame Fiona Caldicott’s third report on data security and opt-outs.

That report, published in July last year, recommended proceeding with national patient data sharing and matching, albeit with far tougher data controls and information governance.

She also recommended giving patients the option to opt-out of how their identified data is used, although not whether it is collected, and urged the government to engage more with the public about how their data is used.

“It’s a completely different approach in terms of a dialogue with the public compared to the one that was used with care.data,” Caldicott said in July.

The government has yet to formally respond to the Caldicott report but has hinted that it would likely back many of her ideas.