Reflections on the third anniversary of shared care records

John Farenden, Programme Director for the National Shared Care Records Programme from 2019-23, reflects on the third anniversary of the ‘Phase 3 letter’ that asked for the implementation of a full shared care record to support the NHS’s fight against Covid-19.

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On Friday 31 July 2020, the ‘Phase 3 letter’, as it was colloquially called, was published. This was at the time that the country moved into a new stage of the COVID-19 pandemic.

Towards the end of the letter, there was a set of asks of Integrated Care Partnerships (ICSs) and Sustainability and Transformation Partnerships (STPs), one of which was to “develop a plan for developing and implementing a full shared care record, allowing the safe flow of patient data between care settings, and the aggregation of data for population health.”

That ask was actually a surprise to the National Shared Care Record team but that was the way of the world in the pandemic period.

Implementation challenges

So that first week in August 2020 was very definitely an “all hands to the pump” period for the team, as we were inundated with asks from local systems about what specification they should be working to.

The discussions of that week, and those immediately following, led to the development of the Minimum Viable Solution 1.0. It wasn’t a scientific exercise with time for discovery and sprints, but rather an incredibly practical piece of work that focused on what we believed would be a non-contentious issue: improving the sharing of patient records between general practice and NHS Trusts.

While that was some distance from our vision of a full shared care record, we felt it would be a well-accepted requirement and offered a measurable and achievable target.

So, if that was the who, what was the information that needed to be shared? Again, we took a pragmatic view using the Core Information Standard (CIS) from the Professional Records Standard Body (PRSB) as our reference point.

However, we knew making compliance with all the CIS was impractical. It was too wide ranging, but it was all we had to hand.

Finally, we sought the advice of our colleagues in the NHS England Chief Technology Office team as to what we should say about standards. That had to be very practical and “off the shelf”.

While it wasn’t how we might have wanted to do it – and it certainly wasn’t a full shared care record, but rather a basic one – MVS 1.0 at least formed the basis for local systems to plan against. And in hindsight it was a real catalyst and stimulus for action, imperfect thought it might have been.

Probably the biggest regret was that, although we could express the information requirements, we didn’t have a common reference semantic data model to include. That meant that the implementations of products from different suppliers have been built on their own designs, which presents a challenge when we come to look at the exchange of information between them.

So, three years on and where are we now?

By March 2022, every ICS had something that could be recognised as a basic shared care record. They vary greatly in their implementations. Some are rich in content, connect many local partners, and are firmly embedded in clinical workflows. Others are still evolving and developing, often because the local providers in the area have lower levels of digital maturity. All are demonstrating benefits; providing access to the information that enables better clinical decisions and outcomes, improving patient experience, reducing costs by avoiding duplicated tests and saving time for busy frontline staff in accessing the information they need to give quality care.

The next stage of the journey is to achieve national interoperability, so that any authorised professional can access the relevant patient-based information they need to deliver the best direct care to patients.

What have we learnt and where might we go next?

Firstly, there has been no pushback against the case that sharing records and plans to support the delivery of direct care is a good thing. It makes sense at all levels. When the programme originally started in 2017 there were over 60 independent record-sharing initiatives with different scope, standards and solutions. We now have a strong community of practice from across the whole country led by local system leaders and with a commitment to working together to reduce variability and increase equity of access.

Secondly, by its very nature, a shared care record requires involvement from many different partners. They will have different priorities and varying levels of resources and expertise to commit to the work. In some cases, individual partner organisations may feel that the contributions that they must make are not always balanced with the benefit that their staff get back. This is where the ICS must hold the ring, think about the patient’s overall experience, and look at the costs and benefits across the local system as a whole.

Thirdly, that act of collaboration has created teams of people with a common purpose working across their organisational boundaries. That has huge benefits – it mitigates against the “us and them” mindset, which can happen when relationships are under strain. It enables people to begin to understand the way in which their colleagues work and the particular challenges they face. Developing professional health informatics careers based on rotational experience of working in different care settings must be of benefit in the long term.

Finally, we are seeing an increased recognition of the value of separating data from application, and engineering solutions based more around the person receiving care than around the providers of care. The only constant in the changing health and care landscape is the person receiving care; it makes sense to be thinking more about their journeys, each of which is unique, even if they share care pathways with others from time to time. That separation also mitigates against supplier lock-in and facilitates innovation through the adoption of common standards.

The National Shared Care Records Programme was often pressed to describe a “definition of done”. That was an impossible question to answer. There isn’t a finite end point. It’s a continuous journey of improvement. When General Practice and NHS Trusts can share then we need to go onto the other parts of primary care, to social care, to local authority social services and to the independent and voluntary sector. And, of course, embracing patients and their carers as full partners in their care. Without them there would be no record at all.

That covers the breadth of those involved in sharing. We also need to consider the depth of data sharing to ensure that the information that is shared – and not all of it needs to be – is accurate and relatable. What one professional may call an allergy, another may call a problem. That points to the need for a shared model of the record, along with consistent use of coding standards, and much good work is now underway to address that.

July 2023 is also 25 years since the then Prime Minister, Tony Blair, stood on the stage at Earls’ Court on the occasion of the NHS’s 50th anniversary and – in the context of the Government’s NHS modernisation ambitions at that time – said: “If I live in Bradford and I fall ill in Birmingham, I want the doctors in Birmingham to be able to access my records to be able to treat me.”

25 years on and we have made progress. The Summary Care Record and its subsequent evolution into the National Care Record Service offer the opportunity for accessing some of those patient records – but adoption and take-up remains variable and it still doesn’t include the more detailed information that those doctors in Birmingham might require for the patient from Bradford.

As the network of existing Shared Care Record platforms become linked together, the opportunity for redesigning care pathways will open up. Those are pathways that don’t start and stop within an ICS boundary, but which operate regionally, nationally and even internationally. Pathways that recognise patients may have multiple conditions and that their personal pathways may be complex and span several providers.

While we have to address technological interoperability, there are many other challenges we need to tackle:

• We need a streamlined approach to data-sharing agreements which is open and transparent and reduces the repetitive burden currently facing providers.
• We need to assure ourselves around clinical governance so that professionals can be confident in the provenance of the information they access.
• We need to ensure we can meet patients’ expectations; expectations that the professionals treating them can easily access relevant information about them, and expectations that they can – if they choose – exert appropriate control over who sees that information.

Those who were fortunate enough to hear Melissa Mead give her moving keynote talk about the death of her son William from sepsis at the National Shared Care Record Summit in March this year will know how critical it is for patients and carers that information is readily accessible to professionals.

Three years on since the Phase 3 letter we are certainly in a better place, but we are by no means finished. We’ve just reached the next waypoint on our journey.

The goal of the National Shared Care Records Programme remains very much the same as it did when it started: to ensure that authorised health and care professionals have safe, secure and ready access to the person-based information they need to provide care for people when they need it, where they need it, and in the form they need it, and with confidence in its provenance.