Special Report: Shared Care Records

Are health services which were slow to develop a shared care record now showing the way ahead? Jennifer Trueland reports on positive developments in mature records – and ‘skyrocketing’ progress among late arrivals.

Sharing data to support patient care has long been an ambition in health services across the UK and beyond, but progress has been patchy. Although in England, each integrated care system now has a form of shared care record, these are at different stages of development and challenges remain.

According to Rachel Hutchings, a fellow at the Nuffield Trust, it’s important to take a system-wide approach – and to be prepared to learn from others.

“There’s no doubt positive progress has been made with shared care records at a local level, building on previous initiatives,” she says. “With ICSs now responsible for developing shared care records within their area, it’s important that learning from this previous work is shared and built on to make sure shared care records are implemented in the most effective way.

“Although still in development, our research has highlighted that effective public engagement, clear information governance processes and a focus on both health and social care are crucial to success.”

Data-sharing to support patients is not just a priority in England but across the UK, says Hutchings, who co-authored the Nuffield Trust’s 2022 report, Digital health care across the UK: where are we now? “In Northern Ireland, the ‘Encompass’ programme is developing a single health and care record for each individual, and in Wales, a specific programme is looking at sharing information to support people being cared for at home.”

Getting to where we are today has not been easy, adds Hutchings, with implementation of some records held back by poor data quality and limited digital maturity.

Research the Nuffield Trust published back in 2019 highlighted the need to look across the whole healthcare system and work with patients and the public to build trust in the use healthcare data. “Continually addressing these issues is vital to ensuring that shared care record initiatives are effective,” she says.

Isaac Fredericks, lead client accountable executive with Oracle Health, who works closely with NHS bodies using shared care records, also points to variability in systems across the country.

“What we’ve seen from our deployments is that there’s a good baseline now, but we’re in a period where there’s a real difference in maturity across the sites and the pace at which some of them are working.”

Organisations that have had shared care records for eight to 10 years tend to have information from more data sources than those who developed them more recently – as you’d expect – he says.

‘Fantastic’ recent deployments

But he adds: “Some of the more recent deployments have really skyrocketed and done some fantastic work in the last two years to catch up with those more mature deployments.”

He cites the Great North Care Record, which covers 3.2 million people living in the North East of England and Cumbria. “They have a huge number of data sources and number of users now across a large geography. That’s a good example of somebody that’s probably come relatively late.”

What has made the difference, says Fredericks, is that the North East already had a strong focus on interoperability and information sharing, so they had a good basis to extend it out across all care settings – creating a richer and broader record that’s already making a difference to patients, and crucially, also to clinicians. Good relationships and governance, and a well-articulated vision, have also been important.

“If you’re deploying a system to an organisation like the Great North Care Record, or someone like OneLondon, there’s tens if not hundreds of organisations that need to be aligned, and they may not always have the same priorities or the same vision of what a shared care record can do,” he says.

Governance is the ‘bridge’ to delivery

“The governance is a kind of bridge between delivery and vision, making sure all organisations are signed up to the vision they are trying to achieve, and understand the importance of timelines and commitments.”

Certainly, the Great North Care Record has made great strides. Since Digital Health interviewed Graham King, chief information officer at The Newcastle upon Tyne Hospitals NHS Trust in 2021, it has built substantially on to the numbers of organisations taking part. It also has plans to expand further.

A spokesperson told Digital Health this month that data was now being shared and/or viewed by 11 trusts, six local authorities, seven out-of-hours organisations and eight CCGs. Hospices are expected to be onboarded by the end of March and plans are also in train to bring in other services, including GP Connect, care homes, community pharmacy and dentistry, and prisons.

Bringing more data on board brings even more benefits for end-users of the shared care record, but also for patients, says Ben Wilson, product solution director with Orion Health. But some areas are still a long way from that.

“Each of the 42 ICSs now have a shared care record in place, whereas if we look back to June 2021, it was only at 71 per cent. So there have been quite a few procurements in the last year, which is good. But they’re all at different stages of maturity around how many partners they’ve connected, what functionality they’ve enabled and what their usage is.”

In the more mature shared care records, such as the Care and Health Information Exchange (CHIE) in Hampshire, progress is continuing, says Wilson. “There are 230,000 records accessed every month at CHIE, and they have 12,500 active trained users, which is up 39 per cent from this time last year, so there’s an upward trend in the number of records accessed by the end users every month, and in the number of users they’re training in the shared care record. I think there are a lot of successes out there.”

Last year, CHIE extended out to 160 care homes, he adds, and they’re hoping to expand that number further and to include community pharmacies. “We’re seeing the breadth of focus extend to the wider care sector. That’s why there are more people accessing it. But parallel to that, there’s more information going into the shared care records, increasingly aligned to the PRSB Core Information Standard.”

New ‘depth’ and ‘richness’ in records

Bringing in data from a wider selection of sources adds to the depth and richness of the record, he adds, which in turn supports the clinician or professional who has a fuller view of the patient or client in front of them. “The richer the content, the more useful it is for the people using the shared care records, because they are able to see the test results, documents from other places [and] social care information.”

Good information governance processes and data sharing agreements have also made it easier to access information, which also improves usability, adds Wilson, who is also an industry representative on INTEROpen.

He believes that as ICSs have bedded in, they have helped promote a culture of collaboration between different organisations, which has helped to improve trust. “What we are finding, and I think our customers are finding, is that there is more collaboration now. But there are still challenges, particularly around resourcing at the moment.”

Hard times and exciting developments

That said – and nobody could deny that health services are under a financial cosh – there are exciting developments in prospect, says Wilson. These include initiatives to share information between regions, potentially even nationally in time. This would help patients moving around the country, or even those who live in one ICS area but work or access treatment in a neighbouring one.

He also believes that there will be an even deeper focus on the wider care sector in the coming year – and he is looking forward to the first Shared Care Records Summit, due to be held in York next month.

The continuing drive towards patient and carer access to the shared record is widening the digital front door, points out Wilson. “I think we are going to see a lot more procurements for patient access this year.”

According to Fredericks, being able to articulate the benefits of information sharing helps to encourage users to embrace the shared care record – not so much to convince patients, but to persuade clinicians of its value. “Patients think it’s always existed because it’s ‘one NHS’ as far as a lot of members of the public are concerned,” he says.

“But now being able to spell out some of the benefits, some of the stories of individual patients who have benefited as a result of information being shared freely and effectively at the right time, to the right person, in the right place of care, has made these organisations want to collaborate better. They know it’s the right thing to do for themselves, for their patients, and for their staff members as well.”