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Special Report: Shared care records

As we head towards integrated care systems (ICSs) gaining statutory status, Claire Read investigates what this means for shared care records.

Hearing Gary Birks review the recent history of shared care records is a little like hearing someone speak about a favourite band that’s suddenly gained mainstream popularity.

“If you compare now to five years ago, shared care records were an exception and the number of instances were still quite limited,” says Birks, who is general manager UK and Ireland at Orion Health. “It almost felt like shared care records were quite niche.”

It’s a reflection shared by Sean Ridley. He joined Cerner four years ago as the clinical lead for their shared care records, a time when he says such setups were “very much novel and exciting, an extra in a sense, a nice to have. And over time they’ve now morphed into a necessity”.

There are a number of reasons for that. National encouragement has certainly played a role, initially via the Local Health and Care Records Exemplars (LHCRE) programme, then via the requirement for all areas of England to have a ‘minimum viable solution’ shared care record by September 2021.

The Covid-19 effect

The pandemic has made a difference too, establishing beyond doubt that an ability to share information between partners in a health and social care economy – to have a single source of truth – is an aid to effective and efficient use of capacity. A lot of previously-challenging pre-requisites to shared care records, like data sharing agreements and privacy impact assessments, were out of necessity quickly resolved during the first wave of Covid. The foundations are there.

But there has also been a structural change which has been important, and which is likely to continue to prove so. The move from sustainability and transformation partnerships to integrated care systems (ICSs), which are due to gain statutory status later this year, has supported a focus on joined up care – which in turn supports the case for a shared care record.

Working towards a common goal

For Richard Gladman of the Yorkshire and Humber Care Record programme, the hope is that statutory ICSs “will act as a catalyst to even closer alignment, and getting people to work together as single teams to achieve a common goal”.

“I think you’re going to get more permanent digital teams that can work with multiple organisations because I think you’re more likely to get funding allocated across a region,” adds Gladman. He sees that as important for shared care record programmes “because I think there’s economies of scale that can be achieved”.

“One of the key barriers for shared records is some of the perceptions about how difficult information sharing arrangements are and governance,” he continues. “And it is a complex world, but what you can do for an ICS is make sure you’ve got a common approach, common paperwork, experts who can then support multiple organisations.

“So you’ve got the opportunity to ensure that you’re doing things right, using the latest national materials, guidance, best practice, and they have enough capacity and expertise in the team to have a common approach and partner with local stakeholders.”

Bringing together stakeholders

The breadth of the stakeholders that will be brought together in a statutory setting is also seen as potentially benefiting shared care records. According to Cerner’s Ridley, the breadth of areas in which such setups are seen as helpful has already increased.

“Everyone knows now that in unscheduled care, people are desperate to see the GP record, the medication list, any allergies. And equally we know primary care loves seeing the correspondence from a hospital on discharge, and the latest lab results, and discharge instructions.

“But it’s everything in between now. It is health visitors being able to see if women have miscarried and not contacting them inappropriately, or hospice being able to see an A&E scan report and being able to tell the person they can stay at home and not have to be re-admitted.”

His hope is that this trend will accelerate further once ICSs become statutory. “I hope it will enable more equity again, so that there’s joint ownership and influence over shared care records by those lesser represented care sectors.”

He sees particular potential in extending shared care records to more easily encompass community pharmacies, in the form of local pharmaceutical committees. “There’s massive opportunity there, and we’re only just beginning to surface that. I hope the advent of ICSs will empower local pharmaceutical committees to have a bigger voice and a bigger influence.”

Moving away from tradition

At Orion Health, similar discussions are taking place about “that scale out from traditional healthcare organisations”. According to Birks, “we’re talking about ambulance services, we’re talking about police, we’re talking about fire services, about charities, about care homes, you can really start to see that evolve very quickly now in the discussions”. Organisations “coming together around the common purpose of an ICS” is helping here, he feels.

“I think we’ve seen more of a common purpose in procurements [for a shared record]. With our more recent customers in Devon, and certainly in Cambridgeshire, we’re seeing expanded stakeholder interest. You’ll go to meetings now and you [immediately] have the right senior executive and clinical stakeholders now very, very interested in shared care records.”

Perhaps in part that’s because the team at Orion Health is seeing such records are merely one aspect of a much wider change. It’s notable that ‘population health management’ is a term Birks uses as frequently as ‘shared care record’ – something that he says is entirely deliberate.

“We often evaluate as a business what business are we actually in, and we’re very clear at Orion Health that we’re here to provide technology to support population health management, and ICSs are all about the population and the system and the component parts of that system,” he says. “A shared care record is just one part of that; it doesn’t just end as a shared care record.”

Improving individual care

Using such a system to underpin population health management is not entirely without complication, however. The original vision for shared care records was generally to support direct care of an individual: improving an individual’s care by making sure a GP and a hospital consultant had access to the same information, for instance.

In a population health management approach, that changes. Data becomes used to more generally identify ill health in a specific group, with an explicit desire to take into account complex social determinants of poor wellbeing. Gladman’s experience with the Yorkshire and Humber Care Record suggests that’s a shift which needs to be handled carefully.

“If you crack the islands of data, if you find a way of being able to get access to information in patients embedded in clinical systems and share it with others for legitimate, direct care reasons, you’ve sorted half the battle of being able to get access to similar information for population health purposes.

“But it is only half the battle, because I think most people have bought into sharing data for direct care use but I don’t think there is quite the same consensus around using it for population health purposes.”

That’s not least among the citizens – it will be crucial, he emphasises, to build trust over this additional use of data and ensure patient wishes are respected. “In the Yorkshire and Humber region we’ve done an awful lot of public consultation about how people feel about their data being used,” he says. “Unsurprisingly they already expect it to be used for direct care. But when you get into the topic of using it for other reasons, then clearly people start to ask more questions, quite rightly.”

If the aim for statutory ICSs is to advance shared care records to underpin population health management, then, there is likely a need to tread carefully.

The right move

Nonetheless, Gladman – who is also a non-executive director at a community trust – is confident this latest NHS reorganisation will ultimately benefit shared care records. “Statutory ICSs will have integrated care boards [the plan is that such boards will lead ICSs, and will have budgetary responsibilities] and I think there will be more sponsorship, scrutiny and assurance of the programmes for ICSs [as a result].

“That will include the digital programmes and the shared record programmes, and I think that’s a good thing because it will be asking local questions for an ICS. It’s not a case of somebody in NHS England checking the money that’s been allocated for shared records is being spent wisely and having the right outcomes: you’ve actually got local stakeholders [scrutinising this], and ensuring these schemes are right for their citizens and take into account their wishes.

“I think you’re going to have more scrutiny and I think therefore there will be more demand locally for those shared care record programmes, and more support for those programmes to be successful. And I think that’s a positive thing.”