Sharing NHS data with private companies presents a “remarkable opportunity” to link data with healthcare action but getting buy-in from the public is crucial as they currently do not trust the sector with their data.
Healthcare and research industry experts added that instead of trying to run before walking, the government was “going full sprint before we can crawl”.
Panellists at the Westminster Health Forum webinar were responding to a question from Health & Protection about comments from chancellor Jeremy Hunt, who emphasised the ‘huge opportunity’ he sees for sharing digital NHS patient health records
Remarkable opportunity
Professor Iain Buchan, associate pro vice chancellor for innovation and chairman of public health and clinical informatics at the University of Liverpool, told delegates there needed to be co-creation with industries providing artificial intelligence (AI) in the healthcare sector, adding the UK has a “remarkable” opportunity to link data and action.
But Buchan added that any data system would need to be transparent about every use of the data, understand the value that is being added and ensure individual identities are appropriately preserved.
Dr Amanda Begley, executive director of digital transformation at the Health Innovation Network, explained that data sharing remained a contentious subject.
“We’ve done quite a lot of work through citizen panels engagement to understand how people want their data to be used and how they do not want it to be used,” she said.
“There is lots of support around real time care delivery and it would be great to have more sharing around social care and the NHS. We’re doing some work around frailty at the moment and we don’t know when someone’s fallen, but often our social care colleagues do.
“The national work around secure data environments is looking at how do we anonymise data?
“How do we ensure data doesn’t leave those secure data environments and is actually taken away by industry, but we’re able to safely answer commercial and non-commercial research questions in a way that aligns with what the public want.”
‘Full sprint before we can crawl’
As for what the public wants, Jacob Lant, head of policy and public affairs at Healthwatch, revealed that at the moment, the people do not trust that their data will not be sold off – underlining the importance of telling them exactly how their data will be used.
“If we don’t give a concrete proposition of what is in scope and what is out of scope, who has access and who doesn’t have access, then people won’t trust it,” Lant said.
“There’s too much opportunity for privacy campaigners to get in there and exploit those caveats and say, actually they’re not being honest with you here. They can do x, y, z. They could sell your data to the CIA or whatever is.
“I don’t think that’s really happening but the caveats lead to that argument taking hold. So limit those caveats, limit those loopholes.
“Be honest with the public about what we want to do with using the data, get their buy-in and over time prove that we can do this safely and we can do this with benefit to patients and the public.
“This is a classic policy area where rather than running before you can walk, we’re going full sprint before we can crawl.
“We haven’t got the public’s trust to do all these things with the data so let’s not try. We have to take them with us on a longer journey to build that trust.”