Roundtable: How is data sharing developing in ICSs and between organisations – and what more needs to be done?

Shared care records are increasingly valued and developed but the obstacles in the way of further progress need to be addressed, agreed a recent Digital Health roundtable with Virgin Media O2 Business. By Claire Read

Back when NHS England was in its exemplars phase of digital health funding, there emerged a set with a high profile and big intentions – the Local Health and Care Records Exemplars; the means through which shared care record creation would be promoted throughout the country.

Six years, a hideous pandemic and an integrated care system restructure later, LHCRE talk among digital health leaders tends to be confined to cycling enthusiasts who are contemplating their options for shorts.

But according to panellists at a recent Digital Health virtual roundtable, run in association with Virgin Media O2 Business, the reason for that is a positive one: simply that the shared care record has become accepted and established as business as usual.

“I think that’s why it doesn’t get the same attention anymore,” reflected Asif Shah, deputy chief clinical information officer at South Tyneside and Sunderland NHS Foundation Trust.

“It’s not seen as a new development. It’s just automatically assumed, in our ICB at least, that there will be access to the shared care record.

“It’s a really valued and increasingly developed area.”

A similar story was relayed by Mark Thomas, chief digital and information officer at Bedfordshire, Luton and Milton Keynes Integrated Care Board. “The shared health and care record, data for direct care from health and care professionals, is going quite well. It’s still evolving and it’s not perfect and we want to bring it on more and expand. But it’s going well.”

It was an encouraging starting point for the discussion, which united digital leaders to consider data sharing in the context of the still-developing integrated care systems. The main question on the agenda – how is such sharing developing across systems and between constituent organisations, and what more needs to be done?

Development requires consensus

For William Lumb, chief clinical information officer at Lancashire and South Cumbria Integrated Care Board, there is no doubt about there being more to do. He sees record sharing “is important”. Equally, however, he sees the shared care record “as the journey, not the goal”.

“I wouldn’t want us to think that we stop at shared care records. It’s the end of the beginning. It’s not the beginning of the end.”

Longer term, he would like to see data shared in such a way that it can be manipulated and analysed. He would also like it to be within a read-write system, allowing users to immediately add to the shared record rather than only viewing a collection of information pulled in from elsewhere.

Any development of a shared care record setup will require consensus within an ICS, and probably a broadly similar digital capability within each constituent organisation. It is here that some panellists envisage a challenge in pushing forward data sharing.

“We’ve got 42 ICSs and I think it’s safe to say that they are all at varying degrees of development,” said Mark Burton, health sector lead for Virgin Media O2 Business.

“The ambition to move to integrated records is great, and we do see initiative moving forward,” stressed Burton, who works with organisations across the UK on digital connectivity. But he also said that digital infrastructure varied significantly between and within ICSs, with consequences for the speed at which it was possible to move on data sharing.

Could it be, then, that for now progress is less about sharing data and more about sharing capability? Holly Carr, chief clinical information officer at Stockport NHS Foundation Trust, suggested it could be.

“Our focus on shared care records is still very much there; I think the innovation’s still there. We have dedicated groups in Greater Manchester which are continuing to push it forward. I think while we have the appetite, the digital capability at present is quite varied.

Share infrastructure and resources

“I think there is something about sharing the wealth [in infrastructure, tools and resources] across a broader patch.”

There may also be a need to advance understanding of how to make the most out of existing systems. Chandu Wickramarachchi, chief medical informatics officer at Barking, Havering and Redbridge University Hospitals NHS Trust, said that in his area “there’s quite a bit of disparity in digital confidence”.

“I think the big thing we need in our patch is workforce training to be able to make the most of the data in the shared care record,” he said. “There are very few doctors who know how to make the most of it, and few who even know how to access it.”

Other panellists confessed concern over whether people actually wanted to access data sharing opportunities. “I think some clinical colleagues still see themselves within the silo of where they live or work,” reported Lumb.

“It’s not just about shared records, it’s about a wider piece – that a consultant in ophthalmology, for example, should be interested in what the GP or optometrist is doing for that citizen. And you know what? Some of them aren’t.”

To further advance data sharing locally, then, it may be necessary to first build an even stronger and deeper and more unified belief in its virtue.

“What probably needs to happen across all ICSs is that we need to put the foot on the ball, stop a moment, and find out what we’ve got, what’s going on at all different levels, and come to some degree of consensus on how to move forward,” concluded Burton.

“A lot of what’s happened, with the best of intentions, is building the plane on the runway. But what we need to everyone to understand the direction of travel and at what point we’re going to be taking off.”

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