For our HTN Now: Citizen Transformation event, we were joined by a team from Apira consisting of Head of Procurement Richard Scowen, Director of Client Engagement David Corbett, Clinical Lead and Transformation Manager Claire Doughty, and Director of Professional Services Alan Brown.
The team set out to discuss how patient engagement and empowerment along with new models of care delivery have been incorporated into digital systems and services projects for their national, regional and local clients. In addition, they sought to share examples of projects where Apira has helped to deploy digital services and technologies, highlighting the benefits provided, and also to share personal experiences of long-term condition management.
To begin, they shared some background on Apira. Formed in 1997, Apira has supported more than 100 organisations within the NHS to gain the most from technology and information. They assist with all elements of the system lifecycle, providing end-to-end support in areas such as digital strategy development, business case, procurement, deployment, adoption and business realisation. Apira works across a number of care settings including mental health, acute, ambulance, community, social care and ICS-wide.
The importance of patient engagement
Claire shared some examples of the ways in which Apira have supported patient engagement.
“Since 2015 the NHS has been providing service users with the opportunity to get involved with service redesign,” Claire said. “Recently, they’ve been involved in assisting digital technology projects to be advocates for the patient voice, to make sure that it is not just fit for purpose clinically but for patients as well.”
This work had happened through groups and forums set up on a local and national level, which Claire noted is important to ensure diversity and inclusivity.
“This will then increase the patient’s knowledge to make sure that they have the skills and feel confident in controlling their own health, and that of their family members,” Claire said. “In turn, once that engagement and knowledge has grown their confidence, this will reduce the need to seek medical advice and enable them to support themselves with minor illnesses and ailments.”
Claire noted that there have been various digital systems and devices brought to market over the last few years to assist patients with long-term conditions to remain at home or in their own space. Apira focuses on implementing systems such as remote monitoring, wearables for blood pressure monitoring and patient monitoring for stratified follow-up for cancer patients, among others. “This technology frees up outpatient appointments because less unnecessary appointments are required if patients come in for check-ups and everything is fine anyway,” she pointed out.
Another area is the patient portal. “Patients can be provided with information such as results, appointment reminders and useful information regarding their condition,” Claire explained. “In some cases, a two-way messaging system can be set up between the provider and the patients.”
Next, Claire turned to virtual wards. “There are currently over 50 virtual wards across the UK, providing over 2,500 beds. This year the NHS has laid out ambitious plans to increase this number across the UK over the next couple of years, and there are also opportunities to involve patients with complex conditions around oncology and palliative patients as well.”
The strategic view of co-production
Richard picked up the discussion at this point to discuss co-production. He highlighted how, in the NHS Five Year Forward View, there is strong messaging around what co-production is and how the NHS should be using it.
The Five Year Forward View describes co-production as “service users, carers and staff working together to develop and shape services, rather than staff making decisions alone. Co-production suggests that to provide truly effective public services, we need equal partnerships between users and providers of a service. It encourages transparency about how and why things are done.” It adds that co-production should be at the heart of commissioning and service design, and should involve working with voluntary and community sector organisations.
To bring co-production into context, Richard used virtual appointments as an example. He noted that increased use is being seen across primary and secondary care, with tools in use such as Attend Anywhere, which Apira have helped a number of trusts introduce and deploy, in addition to WebGP, accuRx and eConsult.
Richard commented: “These tools build on the early work of people and organisations, formalising that and moving away from using less secure digital tools to tools which are purpose built and integrate with EPRs and other solutions.”
Since 2020, there has been a lot of progress around use of these technologies brought about by pandemic necessities. “It makes an interesting case study for co-production,” Richard pointed out. “Did we involve service users when we pushed forward with virtual appointments, or did we just say ‘this is how it is now’?”
The mental health sector can provide other examples. “Mental health has really taken to the concept of co-production and thinks hard about how it delivers services,” he said. “It has a long history of having service user forums set up to talk about culture and how you want your care delivered – that’s been going on for 10, 15 years or more.”
Richard raised integration within IAPT (Improving Access to Psychological Therapy) as an example to discuss, focusing on Silvercloud and iaptus. Silvercloud is an online CBT programme allowing patients to complete therapies digitally; iaptus is an EPR built to support NHS psychological therapy services.
“This is a massive area for mental health trusts,” said Richard. “It’s not that new, the first integration was in 2017, and there is proven experience of it working.” He noted that most IAPT services now use Silvercloud for digital self-referrals.
Richard shared how a trust Apira work with has completed some work with Mayden, who developed iaptus, in order to share the iaptus dataset into the Medical Interoperability Gateway (MIG). “This work has a really good model,” Richard said. “They had senior trust leaders involved in that as well as service users, so there was lots of discussion before implementation about what would be shared and how it would be shared. This means service users can be confident and comfortable in this data being shared with the rest of their care team.”
A large number of patients are involved in this – around 25,000 a year, Richard said – and again, COVID had an accelerating effect. “There was a massive number of people being referred and self-referring to these talking services.”
Personal experience managing long-term conditions through digital tech
At this point, the discussion turned to personal experience from Alan and David around using digital technology to manage their long-term conditions, with a view to sharing how they have found the digital tools and journey from patient perspectives.
Alan has type 1 diabetes and said, “One of the really important things is knowing your current blood glucose levels. It’s really important because that’s the way you measure how much you need to inject, depending on whether your levels are too high or too low.” For decades, he added, completing finger prick test four or five times a day has been the accepted way to check blood glucose levels. He showed a graph to indicate the assumed levels by finger prick tests, available to view at 23:18.
Alan explained that he now wears a patch which tells him what his levels look like using continuous glucose monitoring. For comparison he displayed another graph on top of the first which showcased his actual blood glucose levels over the same time period, as indicated by the patch. The two can be viewed together at 23:53.
The second graph shows how the estimates from the finger prick tests were not accurate; Alan’s levels actually rose sharply twice at times that he would not have known about, had he been relying solely on finger prick testing. “I only know about that because of this piece of technology,” he said. “It’s only just become available and it is prescription-only on the NHS.” He added that some integrated care boards are still not offering that prescription, which means that provision is not equal across the country and it is easier to get it if you can afford monthly fees for the technology privately.
Without the technology being widely accessible across the NHS, Alan noted, “It takes longer, therefore, to find out more about the impact of this on long-term complications. The business case and the evidence so far have been focused much more on the cost of the technology… the improvements to long-term health will take perhaps decades to fully evaluate, and therefore prove.”
Alan highlighted that there are other technologies being developed for use with diabetes; other methods of blood glucose monitoring, such as through contact lenses and smartphones, other methods of insulin delivery such as tablets or long-lasting patches, and closed loop medication, which would see continuous glucose monitoring integrated with a pump for delivery of insulin without need for human interaction.
Looking at the benefits of diabetes technology, Alan said: “For the patient, there is much more control and better management of your diabetes, and much better flexibility on what can be eaten and when.” It also helps carers in monitoring the health of their diabetic patient, especially in the case of diabetic children. For the NHS, it has the potential to reduce costs related to long-term complications, and healthy patients with fewer long-term complications means they lead better, longer lives with more contributions to society.
Managing follicular lymphoma
Next, David shared that he has follicular lymphoma, a type of blood cancer.
He explained that many people now take drugs in response to follicular lymphoma rather than traditional treatments such as chemotherapy. “My diagnosis means that it isn’t a curable condition, because of where it is, but is low grade. That means I’m what they call a ‘watch and wait’. This course of care can be quite hard to get your head around because most of the time people will say that they want something removed, they want to know that the cancer is gone. In my case that’s not going to happen but I think I’ve come to terms with it.”
David moved on to discuss some of the digital technology that has supported him as a patient through the last year. “I’ve had a lot of support from my GP and from Nottingham University Hospitals,” he said. “I’ve had text messages for appointment reminders and test results which has been really helpful. I’ve had two-way communication with my GP practice so I’ve not had to phone them up and spend a long time trying to get an appointment.
“I’ve got my medical history included on my electronic patient records, through the TPP system at my GP practice and Nervecentre at Nottingham. That includes information like my appointments, referrals, discharge summaries and notes from consultations, conditions, medications and treatments, and also test results. That all get shared between the GP, the hospital, labs and other national systems.
“I’ve also had consultations with my consultations over the phone so I’ve not had to travel into hospital all the time, and I’ve used the NHS App which has been useful in providing access to information I need.”
Other ways in which technology has supported David on his patient journey include hospital departmental systems showing a granular level of detail so that consultants and surgeons can show him the areas affected and the cancer grade level; the NHS supplying WiFi at the GP practice and hospital to support him at appointments and procedures; online sources including NHS.UK, blood cancer websites and online groups helping him to self-care where possible, and COVID vaccination management providing prioritisation as an at-risk patient.
Noting that both Alan and David seem to have had good experiences with the digital solutions that they have used around their long-term conditions, Richard asked if there have been any key frustrations or things they would like to see done differently.
“Personally, I think everything’s been really good,” said David. “The communication has been very good. I had one challenge when having an ultrasound in the early days and the hospital told me that they would organise a fast-track referral. I told my GP this and he asked me if I was sure; I said yes and then two weeks later nothing had happened. I had to get through to the hospital department to be told that actually it was something the GP needed to do. But that’s my only frustration. I would say my experience has been really positively, particularly in terms of being able to access information myself, not relying on individuals and having to take up their time to find my information.”
Alan said: “On the positive side, there’s a five-day course put on by the NHS for type 1 diabetics that supplies really good education on when to inject, how to inject, all that information you need to know. My two main gripes are around lack of funding for the patches, which I touched on earlier, and the other is around blood tests. If my GP orders a blood test, the result appears on the NHS App. If my consultant orders a blood test, it never makes it to the NHS App, even though both blood tests are going to the same laboratory and same hospital. So I’d say there is still some disjointedness.”
Challenges around co-production
“One of the big challenges whenever we do anything digital is making sure that we don’t exacerbate digital exclusion, and that we drive inclusion instead,” said Richard. “There’s a lot of research in this area, the most recent being two years of work finishing in 2019. What it showed very clearly was that, if we moved towards digital delivery of healthcare, we risked widening existing disparities in care for people such as those with physical and cognitive disabilities, those who live in deprivation, and those who live in areas with poor internet connection.”
It isn’t unique to healthcare, he noted; the same challenges can be seen in many other sectors. “But it is something that we have to think about. With healthcare it would be very difficult if not dangerous to move solely to digital delivery.”
Bringing the discussion back to designing patient-centred services, and considering that EPRs have a direct impact on patient interactions with trusts through patient portals and the like, Richard asked: “How much involvement do patients have when we are specifying and buying acute EPRs? Almost none.”
Other key questions to consider are: are we including patients and service users enough when we are changing services and introducing digitally-enabled channels of healthcare delivery? How do we overcome the idea that face-to-face is always better? How do we make sure that our staff are comfortable with digital delivery of services?
At this point, the Apira team turned to questions from the audience, available to view from 48:27 below.
Many thanks to David, Claire, Alan and Richard for joining us and sharing their thoughts.
