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HTN Now: NHS Blueprinting team and Humber and North Yorkshire on Electronic Palliative Care Coordination System roll-out

For a recent HTN Now webinar, we were joined by members of the NHS blueprinting team, along with representatives from Humber and North Yorkshire Health and Care Partnership, who shared their approach, learning, and successes from the implementation of an EPaCCS (Electronic Palliative Care Coordination System) in Humber and North Yorkshire.

Making up the panel were Paul Charnley, Saj Kahrod, Tara Athanasiou, and John Mitchell.

NHS England blueprinting programme

Paul has been involved with the blueprinting since he was the CIO at a global digital exemplar site, and he began by sharing information on the programme. “It’s about providing information for projects that follow your own, along with lots of artefacts, job descriptions, plans, presentations, training material, etc. It’s about peer-to-peer learning – not about doing it in a perfect way, but good enough to get good results. The blueprints are there as a step-by-step narrative on how some of these transformations took place.”

Paul added that the programme is “looking to expand our library all the time, so if you’ve got anything you think would be worth blueprinting, then please do get in touch.”

Saj explained that the team is looking to increase their blueprinting portfolio and to reflect good practice, to enable people to access information more quickly and easily. She described how a number of key bespoke blueprints have been created to meet key national priorities, such as better bed management.

In particular, the team is looking to increase their portfolio around around electronic patient records, levelling-up and sustainability.

“We’ve got a learning ecosystem strategy, where we’re looking to share more information and then develop some key blueprints, and we’ve got some examples already on our platform. We’re also looking to enhance the content, to engage with staff and have some interactive models, and we’ve got blogs and videos – if you’ve got any suggestions, please do reach out to us, we’re always keen to enhance the platform.”

The platform is currently home to just under 4,000 users and around 209 blueprints. The blueprint library can be explored by topic, covering topics such as single sign-on, e-comms, kiosks, clinical noting, and e-prescribing.

An introduction to EPaCCS

John went on to offer an introduction to the case for change in palliative care.

He said: “What we’re talking about here is perhaps one of the most difficult pathways, which supports the patient during the last 12 months of their life. That’s naturally going to have some challenges, and it’s important that we make sure that the patient has a voice around the treatment that they receive through that entire pathway. Previously, what was happening is that the GPs were acting as a gateway to that information and changes to that information, which isn’t ideal, because other professionals are involved with the care for end-of-life patients. We can’t have situations where a change is being made but it’s taking a while for the system to be updated. We needed to make sure that all those people who were involved in the care of that patient had visibility of the very latest version of those preferences.

“Rather than having to phone the GP to find out what those preferences were, they were able to see those end-of-life preferences in real time, through their existing systems. During some benefits baseline work, it was identified that that information was either not always recorded, or it was difficult to get; which meant that the ability for the patients to have a say through that process was extremely difficult. We owe it to patients to make sure that they have that voice, so we needed to make sure that information could be viewed and updated by all those involved in that patients end-of-life programme. We’ve moved to a scenario where we’ve got about 300 EPaCCS created every month across Humber and North Yorkshire – we’ve managed to make a really positive impact on the well-being of those patients.”

John handed over to Tara, who explained a little bit more about EPaCCS and how it works.

“EPaCCS is a solution and in essence it’s an online collaborative system that’s based around a standards-based form,” Tara explained. “It can be viewed and updated by appropriate health and care professionals who are looking after patients during their end-of-life care. It includes things like the place where the patient would want to be cared for, their preferred place of death; the circumstances under which they would want to go to hospital or not want to go to hospital; and whether they would want CPR attempted. Also it contains some more important information for the patient – things like whether their family aware of their prognosis, for example.

“I’m just going to come at this from the perspective of a GP practice, but EPaCCS can be created by any organisation which has the appropriate permissions. Whether the GP practice uses SystmOne or EMIS, the software can be integrated. You press a button, and certain information will pre-populate, certain coded information such as their demographics, but also their medications and any active problems, trying to make sure that we’re minimising any sort of duplicate entry. The person creating the EPaCCS will fill in the key information that they want to provide at that point, and it’s intended to be updated collaboratively over a period of time; so as soon as that form has been completed, they press save and then it’s available to all of the other health and care professionals who have access to EPaCCS across Humber and North Yorkshire. That includes everything from GP practices to acute trusts, community providers, some mental health providers, out of hours ambulance, 111, hospices. We even have some care homes in one of our places where they’re being quite advanced in their rollout. It really exists as the single version of the truth for all of those places.”

EPaCCS blueprints

John led the discussion at this point, sharing some more in-depth information on the blueprinting journey in Humber and North Yorkshire.

He said: “Blueprinting is helpful as it highlights some of the principles and policies that we worked through, as well as some guidance. In terms of key headlines, we were absolutely convinced at the start that this was not a digitally-led programme of work – it couldn’t be, because we’re talking about impacting on patient care directly, in a very sensitive environment. So we had to make sure that when we went through our discovery stages, and throughout the entire programme, that the clinical leadership and the clinical ownership were absolutely in place. We had to make sure that we had joint buy-in, joint ownership, joint leadership, and the right team in place to be able to do that.”

On getting the team on board, John said: “Everybody needs to understand the challenges and benefits. We need the appropriate governance in place from day one – it would have been very difficult to try and do that piece of work retrospectively. We also need to make sure that the patient is at the heart of everything we do, that we’ve got patient reps in our governance. They do a fantastic job of keeping us honest – there isn’t a question that they won’t ask, there isn’t a challenge that they won’t put in.

“One of the biggest learning points is that we aren’t just changing or implementing technology here. We are implementing fundamental transformational change; business change. If we only replace the technology and the technology alone, have we made any difference if everything else remains the same? And the answer is no. So we need that process for change so we become an enabler to transformation, rather than just a box in the corner.”

“Any change is hard. This was quite a complex time directly impacting clinical processes and patient wellbeing. It takes time – you’ve got to be honest, that there will be challenges, things won’t always go as you expect. You can’t capture the benefits if you don’t understand the starting point. Making sure that we’ve got a rollout plan in place allowed us to be focused on place by place – breaking it down into manageable chunks, rather than trying to do a complete roll-out across the entire ICS. There also needs to be evolution through the system, so making sure that we have that process in place able to capture the feedback and improvement suggestions to take forward.”

Evolution of blueprints

Tara explained in more detail exactly how the blueprint had been refreshed to reflect feedback.

“As we were updating the blueprints, I think the thing that came across the most strongly to me was how far we’d come through listening to the feedback of our stakeholders and our partners. When we first rolled out EPaCCS, there were absolutely gaps in where we wanted it to be – it wasn’t the perfect solution, and we had some quite challenging conversations and some head scratching,” she said.

“Some of the enhancements we made included integrating EPaCCS to the Yorkshire and Humber Care Record, which was important because it provided the platform for us to make the end of life information available to our paramedics in our two ambulance services. We had to bring some people together who might not naturally work together; that always brings its challenges, but actually having this information available when an ambulance is called out, that can inform what the best course of action is for that patient – that’s where the real change happens. So it was absolutely instrumental we also have a view of that information in our shared care record, so that the information is now available to the likes of our adult social care teams, who wouldn’t necessarily have access to the EPaCCS system itself.”

“The second point is around contextual launch. Anyone who works in digital and shared care records will know that one of the biggest challenges we face is that if you roll out a new system and you tell busy clinicians that they need to log in separately to this system, it’s not going to go down well. When we first rolled out EPaCCS that is exactly what you had to do, and we had an awful lot of pushback on that. It was hard to get that piece of functionality developed – the supplier had to work in partnership with TPP and EMIS to make that happen, so it wasn’t a quick win. However, since that’s become available only in the last year or so, it really has made a big difference.

“We also had feedback that for users of SystmOne outside of GP-land, there wasn’t originally the ability for coded data to flow backwards and forwards between the two systems, which meant that there were certain elements of re-keying of data again. We worked with the supplier on this, and they developed the functionality to do that, but again it took some time, and it wasn’t without its complexities from a technical perspective.”

Feedback from the frontline

John and Tara shared some feedback from Yorkshire Ambulance Service, which showed the impact that it had made on frontline services, having access to EPaCCS had made. Feedback included that it was an “extremely useful tool to enable good patient care”, and that it “gives extra confidence when making decisions around non conveyance and best interest treatment”.

John said: “The national average is that between 42 and 45 percent of end of life patient cohorts will die in hospital, whereas for patients who had an EPaCCS in northern Lincolnshire that’s 14 percent. It used to be much higher. The ability to take on board patient preferences means that patients are dying in their preferred place of death. In my personal view, the previous stats were unacceptable, and we’re now getting to a point where we’ve really given the patient a voice going forward.”

On other benefits from the frontline, Tara shared: “We worked as part of our programme with our benefits manager, and our end-of-life clinical leads at a place level along with the ambulance services, to try and develop some methodologies so that we could actually start to capture and quantify what benefits might look like. Making improvements for patients is the key driver of EPaCCS, but it also has an impact on other things such as potentially saved conveyances to hospital, or potentially saving avoidable admissions for patients to hospital. Because paramedics have access to the preferred place of care and death of the patient, and also the circumstances under which they want to, or don’t want to, go to hospital; they can reduce the number of patients that might be conveyed to hospital against their wishes. We estimate that that equates to just under 16,000 avoided conveyances over five years.

“We get asked quite frequently whether this benefit is down to digital, and the answer is that digital is just one very small component. It’s the enabler. Everything that’s happening behind the scenes here – the improved ability to identify end of life patients, the having conversations, making sure those conversations are happening at the right time; EPaCCS doesn’t do that. It doesn’t replace those clinical conversations, but it has been a catalyst that has helped to move those conversations forward.”

We’d like to thank our participants and audience for their time on this topic.