Supporting people and optimising services through digital care pathways: key regional and national learning from musculoskeletal and gastroenterology Adoption Fund projects

Health and care teams across England are transforming services for people living with some of the country’s most prevalent, chronic health conditions by realising the potential of digital innovation to improve choice, experience and outcomes.

Pan-organisation, multidisciplinary collaboration and person-centred co-production, supported by the NHS England Adoption Fund in 2021/22, catalysed the introduction and evolution of digital pathways for local projects within multiple Integrated Care Systems (ICSs).

Supporting unique populations across England, 23 projects focused on harnessing the potential of digital and data to support personalised choices around care, service access and self-management for people living with either a gastroenterology related or musculoskeletal (MSK) condition.

The legacy of this work means a rising number of people are being supported to safely manage their condition from the comfort of home, while local and national decision-makers have a new level of evidence-based insight to help them optimise services.

This case study explores experiences, challenges and achievements involved with enabling and scaling MSK and gastroenterology projects through a local, regional, and national lens. It features views from the following people involved with the Adoption Fund, MSK or gastroenterology projects:

Gastroenterology projects

• Karen Kemp, Consultant Inflammatory Bowel Disease (IBD) Nurse, Manchester University NHS Foundation Trust, Greater Manchester Health and Social Care Partnership
• Kathryn Phillis, Inflammatory Bowel Disease (IBD) Advanced Nurse Specialist, Chesterfield Royal Hospital NHS Foundation Trust
• Prof Shaji Sebastian, Consultant Gastroenterologist and IBD Service Lead at Hull University Teaching Hospitals NHS Foundation Trust, Humber Coast and Vale Integrated Care System

Musculoskeletal (MSK) projects

• Andy Bennett, MSK National Clinical Director, NHS England
• Matthew Carr, Clinical Director, Sussex Integrated Care Board
• Ryan Brunsdon, Project Manager, Gloucestershire Integrated Care Board
• Kay Stevenson, Consultant Physiotherapist, Midlands Partnership University NHS Foundation Trust, and NHS England Regional Allied Health Professions (AHP) MSK lead
• Richard Fallows, MSK Transformation Clinical Lead, Shropshire, Telford and Wrekin Integrated Care System
• Mark Agathangelou, NHS England Lived Experience Partner

We are grateful to all for taking part in this case study and sharing their learning for the benefit of others.

Personal perspectives differ according to specialism or region, but a clear consensus among all contributors is that early collaboration and co-production with patients, staff and subject matter experts is pivotal to enabling and scaling a successful digital pathway at pace.

Issue and opportunity

The Adoption Fund aimed to support local teams across the country with projects seeking to digitise patient pathways for high-demand clinical services, using evidence-based solutions that could be scaled at pace.

Clinical leadership was central to determining priorities, scope and the viability of projects, with an advisory group supported by national specialist boards proving integral.

The national team identified five MSK priorities grouped into three different areas and two gastroenterology priorities, with funding subsequently awarded to 10 gastroenterology ICS projects and 13 MSK ICS projects.

Gastroenterology

In Chesterfield, IBD Advanced Nurse Specialist Kathryn and her team at the local acute trust support more than 2,000 patients living with IBD (Inflammatory bowel disease) conditions like colitis or Crohn’s disease.

Improving patients’ experience of faecal calprotectin testing, which tests for inflammation in the intestines, and the speed of results were key motivations for digitising the pathway.

Kathryn said: “Before this project the average time for a test turnaround was two weeks, in which your patient could get worse. They could start treatments that maybe we would not start if we had access to the home testing technology, where the result is available within two hours.”

Improving patient experience was also a major motivation for IBD Nurse Consultant Karen, who explained how prior to applying to the fund, her team in Manchester, based at the city’s acute trust, had already been exploring the concept of patient-initiated follow-ups (PIFU), the potential of home calprotectin kits, and trialling free versions of home testing apps.

She said: “We were never able to pull all three things together, so the funding gave us the opportunity to put what we were trying to do into practice. It meant we could move the service forward for the benefit of our patients while also maintaining the safety of our patients.

“Prior to this project we would post a test kit out to the patient and then the patient would post a sample back to us or directly to the lab, which can take up to three weeks to get a result.”

Patient experience, opinion and a diverse geography were three major drivers for the IBD service team in Hull and East Yorkshire, who look after more than 4,700 patients across a mix of urban and rural communities.

Professor Sebastian, a Consultant Gastroenterologist based at Hull’s acute trust and IBD Service Lead for the region’s integrated care system, said: “We had a purpose and a vision that we believed in not just as leaders, but as core members of the team.

“We had feedback during one of our regular patient involvement events that people wanted to see what digital alternatives were available for them. People in our region, which is quite large and rural, can have a long-distance journey to access care, while some of our patients were also interested in the environmental sustainability of healthcare when it comes to travelling to appointments.”

MSK

In Gloucestershire, the ICS team wanted to drive a system-level holistic digital approach to support patients living with or recovering from MSK conditions like back or joint pain, or arthritis.

Project Manager Ryan said: “Before the project, we did not really have a robust, user-friendly, or interactive support system for patients to help manage their MSK conditions outside of seeing a clinician or a GP.

“Our senior physiotherapists had already seen the technology available to them and identified how they would use it in an acute setting and upscale it with other settings.

“We wanted to make the digital solution available to some of our non-clinical programmes like social prescribing and healthy lifestyle, community wellbeing and smoking cessation services. We wanted to offer the technology as a whole system and not just one specific part of the MSK journey.”

Unlocking the potential of data via digitisation to understand, optimise and improve the impact of services was a major motivation for the MSK teams at Sussex ICS.

Clinical Director Matthew said: “Before this project, we had a range of community MSK service providers and no way of consistently understanding the value they added to our patient population.

“They had various approaches to data collection and the data was not available in a user-friendly format to help inform clinical practice or our teams understand population outcomes to inform continuous improvement.

“Some approaches were quite focused on manual collection from clinicians, which took a lot of the focus away from clinical activity and really acted as a deterrent for clinicians to engage in the process.”

In Staffordshire, the ICS team saw digitisation as an opportunity to help solve an issue faced by other local systems.

Kay, a Consultant Physiotherapist based at Midlands Partnership University NHS Foundation Trust and the region’s AHP MSK lead said: “We have a huge burden of disease around back pain and when we looked at our reasons for impaired health across our region, musculoskeletal conditions are huge compared to other conditions and back pain features very highly.

“We also wanted to think about innovative ways of supporting new practice and our first contact practitioners, who we know are having a huge impact in our primary care services in Staffordshire.”

Tools and technology

MSK

The Adoption Fund team identified five MSK priorities grouped into the three areas: data collection, self-management and referral optimisation and supported 13 ICS project teams to implement digital solutions.

Nine projects aimed to help patients, including those with back and knee pain, through supported digital self-management, with four ICS teams opting to use the getUBetter app.

A further four projects had a substantive focus on improving the collection of pre and post appointment basic data, using technology such as Cemplicity or MyRecovery app and platform to capture and monitor patient outcomes and experience.

The team at Shropshire, Telford and Wrekin ICS used MyRecovery to tailor their data collection and standardisation approach, while aiming to create a seamless digital experience for patients between care settings.

Physiotherapist Richard, the ICS’s MSK service lead said: “We were keen to collect data on Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) to understand how well we were working with patients to make shared decisions on their care pathway.

“We rolled the app out into community and surgical pathways, and it is continuous for the patient, so if they do go on to have a specific surgery the one app will follow them all the way through.

“It will remind them of checklists if they are going for a consultation or pre-operative check. In the surgical part, it reminds them of their bespoke exercises and gives them information about where to go and where to park and who to contact.

“The community part gives more generalised support that gets more refined with their diagnoses and can lead to more specific exercises and supporting information.”

A system level approach

In Sussex ICS, the MSK community teams procured the Cemplicity app and worked with their supplier to embed one common digital solution to enable a consistent data collection approach at a system level across five different organisations: three NHS trusts, a social enterprise, and a healthcare charity.

High volumes of consistent data are now readily available to clinical teams, with real-time digital access to meaningful datasets without any manual burden of data collection.

Matthew said: “All of the data we wanted is now collected either from our electronic health records or from electronic patient surveys. It is intuitively captured in real time and added to a dashboard accessible to more than 100 of our clinicians, allowing them to understand improvements in pain, function, and quality of life.”

In Gloucestershire, MSK patients using the getUBetter app receive tailored self-management information on a 24/7 daily basis and can score how they are feeling on that day.

Ryan explained how the app has built in red flag safety alerts if a patient is not getting better, or begins to feel worse, which halts interactivity and prompts them to see a clinician.

He said: “The app will essentially lock them out and advise them to go and seek advice from a clinician or an appropriate care setting.”

In Staffordshire, Kay and her team aimed to bring together two evidence-based innovations, the STarT Back questionnaire and the selfBACK app, with the help of their supplier.

The ICS team wanted to offer patients presenting to first contact practitioners the opportunity to help improve their symptoms and self-manage their care from the comfort of home.

Kay said: “When a patient comes in with back pain to see a first contact practitioner, they fill in a STarT Back questionnaire.

“If they score low or medium, they're offered the use of the selfBACK app, which is designed to support self-management, give them evidence-based messages including about recovery exercise, coping with their mood and sleep, to manage their back pain going forwards as opposed to being referred on to traditional physiotherapy.”

Gastroenterology

Of the 10 projects awarded funding for gastroenterology pathways, two focused on providing digital support to help people effectively prepare for their procedure, with the majority awaiting a colonoscopy.

Digital educational tools and prompts like text reminders aimed to support patients with effective bowel preparation, which if not done correctly can lead to a more difficult or even cancelled procedure.

A further eight projects aimed to offer a digital service to people living with inflammatory bowel disease, including offering patients the option of carrying out a faecal calprotectin test at home, with test results received within hours. Each chose to use the CalproSmart home test and Ampersand MyIBDCare app and results portal.

In Manchester, Karen and her team built scoring systems into the app to support effective monitoring and triage.

She said: “Our project’s care navigator was taught how to interpret the scores prior to the service going live and we also created an implementation book for staff, so they understood the service and in particular the role of the navigator.”

In Chesterfield, Kathryn describes the test to patients as: “a bit like doing a Covid test at home, only you’re using poo.”

She said: “Patients have said the kit is easy to use with clear instructions. The supplier video is useful, and I often watch it to update myself.

“Patients are amazed at how quickly the results come back. They will indicate if they have no active disease, mildly active disease, or if the disease is severely active. The people who indicated moderate active disease has helped us plan what we do next.

“We have successfully implemented a standard letter to suitable patients and information leaflet stickers that go out with the kits to tell them how to store the kit in the fridge correctly. We have also created a standard results letter that also gives patients the opportunity to contact us if they are symptomatic.

“It’s important to make sure that all the signposting information for patients in any correspondence is accurate and up to date, as we often receive emails about changes or rules around use of additional software or smartphones."

Process

From the outset, the Adoption Fund team aimed to grow a community of practice to support ICS teams throughout their project journey, providing shared learning opportunities to unite people, regions, and pathways.

This included the intrinsic involvement throughout selection, enablement, and delivery of lived experience, specialist and third sector individuals and groups, including the Arthritis and Musculoskeletal Alliance (ARMA) and the British Society of Gastroenterology.

Pan-project, cross-regional monthly meetings for ICS teams brought multiple stakeholders together to share experiences, learning and resources. Material assets to address common issues, like templates to support information governance requirements, were shared by ICS teams more advanced in progress.

Local systems also replicated this approach and ethos within their own regions like in Chesterfield, where Kathryn created a standard operating procedure essential to supporting the digital IBD pathway since replicated by a neighbouring trust.

Navigating governance

In Staffordshire, reflective of nationwide changes to the health and care organisational landscape, MSK project implementation coincided with the formation of the region’s new ICS.

Kay said: “We had to make new connections and new relationships, especially to work through the governance agenda, which was a huge challenge. We got a lot of expert advice locally and from share-and-learn events arranged as part of the Adoption Fund. Hearing the experiences of others and what they were doing was hugely useful for us.

“Our learning means we've helped put a set of recommendations together to help other project teams to influence at ICS level.”

Like Staffordshire and other local systems navigating the evolving sector landscape, the Manchester team encountered the challenge of addressing information governance (IG) requirements.

Karen explained how her trust’s IG team created a staff group to support several different services all aiming to introduce apps.

She said: “The IG team wanted to make sure all the apps, including ours, met the trust information governance standard and the legal aspects of contracts.

“This group became instrumental for us as it bought us all around the table together with the director of information governance, the procurement team, clinicians including myself and our consultant and our navigator.”

Creating a bespoke service

ICS teams emphasised the importance of embedding their own local system multidisciplinary and advisory groups at the core of the project, from solutioning and concept development to service evolution.

In Gloucestershire, the MSK team asked lead clinicians from acute and community physiotherapy, including an orthopaedic consultant, GP, and physiotherapy consultant, to help co-design the app content. Based on the standard supplier document, the bespoke design aimed to fully meet the local vision and need.

Ryan said: “We were keen on making sure this was as localised to Gloucestershire as possible and did not want to deliver a self-management app off the shelf to busy services.

“We wanted to replicate what an MSK journey would look like through our local system in terms of how a patient would present, where they would present, where they would be referred to and the information they would receive at various points.

“We own the service as a local MSK system, not an individual primary care or acute trust, and we all have responsibility for it. I think everybody in that process would strongly feel this was key to some of the success that we are starting to see.”

Meanwhile the Sussex MSK team implemented a monthly meeting cycle to bring regularity to clinical, IT and broader stakeholders coming together to give updates and work on emerging challenges.

Matthew said: “We have created a space where everybody feels like an equal partner in those meetings and it’s the place where we really ground both the implementation and learning from our Adoption Fund journey.”

Early adoption, scale and spread

In Hull, the gastroenterology team carried out a pilot of their solution led by staff previously identified for their IBD home project, including an administrator identified as the pathway’s navigator and two senior IBD specialist nurses.

Prof Sebastian said: “We had a group of staff with understanding of the concept who were keen to progress the project, which was helpful.

“We had communications with an initial group to test the water and their feedback was very encouraging, with great uptake.”

In Gloucestershire, the team piloted their new service in acute care. Patients waiting for a physiotherapy appointment received a letter reassuring them they were progressing on the waiting list, but in the meantime a new self-management app was available to them through a scan of a QR code.

Ryan said: “We knew we could not just put this app out everywhere through all services in one go, so our acute physiotherapy team went live with the service first as early adopters.

“Shortly after, our community service went live and replicated the same process. Initially, we experienced lower uptake in primary care compared to acute and community settings.

“We tested for a month to capture insights, which prompted discussion around trying to improve engagement and to increase numbers and continued to offer awareness sessions to primary care. Exploring different implementation avenues was key in onboarding practices.

“Having early adopters or key champions in specific practices and Primary Care Networks (PCNs) started to have a ripple effect of people wanting to have the technology. Word of mouth has been powerful.”

People

National and regional partners worked together to encourage an educational culture with lived experience central to leadership, co-design and co-production.

Regardless of project, pathway or specialism, all teams wanted to create an environment where staff shared their vision and patients were supported to understand and manage their condition, with more choice on where and how they could receive their care.

Lived experience and patient engagement

NHS England Lived Experience Partner Mark, who lives with chronic pain, played a key role in the Adoption Fund programme as part of selection panels and progress meetings.

He said: “I was excited to be involved in this work because it is pioneering new ways of working that can transform the way in which care is delivered.

“People can be enabled to have better lives, manage their conditions, get their treatment more efficiently and potentially massively change the way in which they experience healthcare and the outcomes they get.

“It is important to have a service user perspective in the entire project to keep things grounded and patient-focused so that perspective is always in everyone's mind. When we are looking at projects, I can ask the question that might not otherwise get asked.

“I've learned from talking to healthcare professionals that they are more focused on what patients’ want rather than any preconceived notions of what is in the patient's interest, which with the best will in the world are not quite the same thing.”

In Hull, the IBD team have a well-established patient engagement approach, including regular feedback forums.

Prof Sebastian said: “It’s so important to keep the patient right at the centre and get their views on whatever you are starting so it has acceptability among the patients you are doing this for.”

Staff advocacy

Winning the hearts and minds of colleagues, from health and care professionals to decision-makers and infrastructure leads, was central to all project teams in successfully delivering their vision.

In Manchester, the IBD team worked hard to explain and advocate the benefits of a digital pathway to clinical colleagues.

Karen said: “I think sometimes some of the consultants were a little hesitant about a digital service, so we attended some of the consultant meetings and explained what we wanted to achieve for the patients who go into PIFU, that they were safe and were being monitored.

“In fact, with the project, these patients were managed better than if they went on a 12-month annual review because they were being monitored from their scores and every six months from their calprotectin test.”

Prof Sebastian explained how his IBD team in Hull gained the support of management colleagues by articulating the value of the project to patients and broader resource management.

He said: “We explained about improving access to care and reducing the number of a face-to-face visits, thereby impacting on waiting times.

“Equally importantly, we were able to convince them the pathway would provide patients with a rapid access to care, through self-monitoring of their disease activity and direct communication through the app with the IBD service team, so we can initiate treatment properly and thereby avoid a potential admission or emergency attendance.”

Resource, responsibility and the role of the navigator

Echoing learning from digitally enabled health and care projects separate to the Adoption Fund, teams saw the care navigator as a crucial resource to lead administration and optimise clinical time.

In Chesterfield, much of the administrative burden of adding patients to the digital pathway and uploading results to the hospital system was shouldered by Kathryn, who felt a navigator would have been a huge support.

Karen, whose IBD team in Manchester did have a navigator from early in the process echoed Kathryn’s sentiment from practical experience.

She said: “None of my IBD nurses could have done what the navigator has done as demand on their time is huge. The role has been ideal to bring a project like this to fruition.”

Culture

The Adoption Fund team sought to energise the regional appetite for digital innovation previously accelerated by resources like NHS England digital playbooks.

It aimed to nurture a ‘create once and use many times’ shared learning ethos across teams.

Richard said: “Having some support, seeing that you are not alone and encouraging your team through some of those difficult points along that journey has been critical.

“We could talk with other teams that had similar problems and suggest topics to the Adoption Fund team who then found speakers to help us understand and resolve our issues. Fundamentally, we could collaborate and bring together data to gain a more significant understanding of how to best deliver healthcare using digital means.”

Matthew said: “One of the things that I have found most valuable is creating a safe space for critical inquiry, where people feel able to challenge but also learn from each other. We have been able to develop as system partners, building relationships and making sure people feel that what they share will be trusted and not criticised in a negative way.

“If you see an opportunity to drive improvement and local development of such an initiative, you do not have to be the lead to lead it. We have some great clinicians who are driving powerful, meaningful improvement who are not the senior leads within their organizations.”

Kay said: “Bring a broad church of people around your table and be willing to reach out to those people who have expertise.

“We made new friends in the governance space that, as clinicians, we did not know before, while patient partners are key to any successful project. If you have operational leads, GPs, commissioners, and academic researchers, invite those to the table too.”

Benefits and impact

An Adoption Fund rapid evaluation report, containing early qualitative and quantitative findings, is available in addition to this case study.

Pan-pathway benefits

• positive impact for people on high volume, low complexity pathways
• reduction in need for pre-operative visits to care settings
• reduction in Did Not Attends (DNAs)
• reduction in unnecessary clinical follow-ups and appointments
• reduction in cancelled procedures
• positive patient experience of exercise and treatment through digital support

Mark said: “There’s huge potential to improve the way in which people are enabled to help themselves through using digital, whether that's wearables that give people their own data so they can manage their own conditions better, or getting access to the support they need when they need it.

“I've seen within my patient network how digital can be used to really support people, help people to support each other and can have a real impact on experience and outcomes.”

Gastroenterology: additional benefits

• faster results
• broader choice of setting for testing

Karen said: “It is a massive benefit to do a home test and get that immediate result because we can expedite treatments and see patients quicker.

“If a patient becomes poorly out in the community, we have a way of managing, monitoring and knowing what is happening.”

Kathryn said: “I'm confident that in time as we send more kits out, it will prove this cost effective, time effective and will help to manage patients’ disease effectively.”

In Hull, Prof Sebastian said of the first 800 patients using the service, the team have reported a reduced number of ED attendances, an improved speed of managing any flare-ups, and a reduction in the number of patients seen annually in a face-to-face clinic.

The team are holding events with patients and staff to gain further formal feedback and looking at sustainability based on the carbon footprint of individual appointments.

Prof Sebastian said: “There was lots of positive feedback and one piece that gave me great joy was when a patient mentioned they truly feel like myself, the nurses and other healthcare professionals are part of their own close-knit family to whom they can communicate with at any time they need to, rather than when they are sent an appointment.”

MSK: additional benefit

• supporting people on elective waiting lists, including those waiting for knee and hip operations, to have personalised care and take control of self-care at home

Richard said: “Our patients are telling us they are a bit amazed about how we know what condition we are looking at and how well it fits what they have just talked to their clinician about. That for me is a sign of success.

“Of course, I do not wish my patients to carry on up to surgery, but should they have to, we can follow them all the way to a specific surgical outcome. Clinicians can see the value and I can see that because of the way they are giving strong feedback to develop things further.”

In Sussex, the team is capturing more than 1500 patient episodes of data each month.

Matthew said: “It is by capturing that real high-volume data that we are now starting to see where the value is across our services.

“We've started to see results we were not really expecting. For example, our non-white British patients come into our service with higher levels of pain, poorer levels of function and do not make the same levels of improvement as our white British patients.

“We can now proactively change the focus of our services to see if we can shift that and make sure there's equity in terms of levels of improvements across all of our populations.”

In Staffordshire, the team are furthering their understanding of impact by working with Keele University on a project called Midas.

Kay said: “We are looking at the use of resources in a particular area of Staffordshire and Stoke-on-Trent as our control group. This means we will have data to compare what is happening to people who use the STarT Back and SelfBACK approach and those who do not.

“We are also bringing data together to look at what's happening with patient outcomes, experience and referrals.”

In Gloucestershire, where 60 out of 70 GP practices are now live with the self-management app, the ICS team is also working on a bespoke evaluation.

Ryan said: “Our supplier provides us with a benefits report at the end of each month looking at cost savings across the system, including GP appointment and prescription cost avoidance. Their algorithm is based on an initial pilot in South London, so we want to validate these benefits locally for Gloucestershire.

“We have a GP practice willing to participate in this first evaluation piece with us, so we are working with the supplier to understand patient journeys from primary care into potential physiotherapy; including whether they have needed to seek clinical advice, if their prescriptions have lowered, and whether emergency department attendances and secondary care referrals have reduced.

“Some of our lead clinicians, particularly after community services went live, reported some patients were able to self-manage at home and did not feel they needed to see the physiotherapist. Other patients are only seeking one session now instead of five or six.”