“A virtual hug of support” is how Emma Vaux from Royal Berkshire NHS Foundation Trust described the system put in place as part of their project to support chronic kidney disease patients with easy-to-understand information. This description could well apply to Vinehealth’s project to improve self-management of cancer or Nicola Thomas’ work at London South Bank University to reduce unnecessary outpatient appointments.

All of these Q Exchange projects apply a technological solution – such as an app or digital platform – to address a very human problem. How can we share better information between patients and clinicians in ways that make it easy to access, understandable and helpful for both patients and clinicians?

So, it was telling that, in describing their projects, these improvers emphasised not the technological solutions themselves but the human interactions necessary to ensure the technology was patient-centred and could be implemented within NHS settings.

Solutions to fit complex people and systems

Nicola Thomas, Professor of Kidney Care at London South Bank University (LSBU), was faced with organisational as well as technological, challenges when it came to piloting an online questionnaire within a trust.

These improvers emphasised not the technological solutions themselves but the human interactions.

“The overall aim was to consider how we could fully involve patients in deciding whether they needed to come for clinic or not by sending an online questionnaire for patients to fill out which the clinicians could then receive, and they could decide together whether the patient needed to come in…It’s all about involving patients at the start. It needs to start with them,” Thomas said.

However, to enable technology projects like this to go ahead within healthcare settings, it’s not only patients, clinicians, and service managers, but ICT and information governance (IG) professionals who need to be involved.

“The ICT and information governance people at the trust were the important ones and we didn’t think about those early enough,” Thomas said. “The trust didn’t have a process for working with new tech companies. COVID-19 hit, and priorities changed. Here was me at the university and we needed IG sign off from somebody in the trust and the company themselves. We couldn’t unblock the blockage.”

It’s not only patients, clinicians, and service managers, but ICT and information governance (IG) professionals who need to be involved.

Rayna Patel, CEO and Co-Founder at Vinehealth, also highlighted the challenge of working with complex systems – human and organisational. The Vinehealth app was used to support colorectal cancer patients self-managing very complex care in the community.

“You just can’t anticipate where the roadblocks will be,” she said. “Healthcare is very, very complex. There are many stakeholders involved and they all have different needs. Service leads and managers are going to need to be on board to understand why a technology is going to be valuable for their service. Any solution needs to be liked and accepted by patients and needs to fit seamlessly into the existing system, whilst not adding to the work of people delivering care.”

Understanding what’s important

The LSBU kidney care outpatient project concentrated on working with patients and carers with lived experience to understand what really mattered to them.

What matters to me is my mental health, my employment, my fertility, my pain. – patient feedback

The team found that, while physical symptoms played an obvious part, what mattered to patients was the ability to discuss other aspects of their lives at their out-patient appointment, including their mental health.

Thomas is clear that what clinicians think is important is not what patients think is important: “We worked with a couple of transplant patients who  from both the trust and also from Kidney Care UK to review a validated symptom checklist for people post-transplantation. The patients said, ‘A lot of this is not what really matters to me. What matters to me is my mental health, my employment, my fertility, my pain.’”

Royal Berkshire NHS Foundation Trust’s self-management project set out to evaluate how patients best understood and wanted to consume health information in the form of written information with diagrams and immersive, interactive animated digital information. It also tested acceptability to patients of delivering this information digitally and remotely.

The project’s success was seen as a direct result of patient involvement in the design process. Nearly 90% of patients that used their education materials said that this information helped them to know more about their chronic kidney disease. Emma Vaux wrote: “Having patient representatives as part of the project working group was integral in helping to design materials suitable for the needs of patients.

The project’s success was seen as a direct result of patient involvement in the design process.

For the Vinehealth project, the project team knew that if they could improve self-management and patient data collection then they could improve patient survival dramatically. The literature suggests that consistent collection of patient-reported data in cancer can improve survival about 20 per cent. So, the questions they began with focused on what patients were struggling with every day and what information clinicians needed to understand whether a patient was improving or deteriorating and needed further intervention.

“Involvement of clinicians and patients from the very start is essential,” Patel said. From working with both it became clear that patients would “come to an appointment and not be quite sure when to seek help, how to express everything they’ve experienced or what it’s most important to communicate in a time-limited appointment” so the app development looked at how to support patients with this.

Collaboration and partnership

All the projects were clear that without collaboration and partnership, they would not have been able to develop a technological solution that met patient needs or that could be rolled out to support patients and clinicians more widely.

Collaboration is essential to building any health technology that will be used by patients and clinicians. – Rayna Patel

Thomas said that while most people now recognised the need for co-production with patients, many still struggled to know how to go about it. She said: “Some clinicians genuinely don’t think that they have access to patients – there’s a block there. We have a national kidney patient involvement  network (KPIN) now. KPIN has a website where we can advertise our involvement opportunities to find people with lived experience of kidney disease to contribute to quality improvement projects. Clinicians provide details of payment of involvement opportunities, expectations and outcomes, so we’re starting to turn the corner on that.”

Vinehealth’s project, too, had co-production at its core. “Every single feature we’ve built has had consultations with patients and clinicians,” Patel said. “Collaboration is essential to building any health technology that will be used by patients and clinicians.”

Both projects worked closely with charity partners that helped to recruit patients with lived experience or to provide vital feedback from a patient perspective. Vinehealth’s project worked with patients from Macmillan and Bowel Cancer UK, while Thomas’ project worked closely with Kidney Care UK, whose policy director was part of the project team.

Being able to connect with others through Q Exchange and the Q community has made a real difference.

Vaux described working in a cross-functional team with representation from primary care clinicians, secondary care clinicians, patients, the trust patient information manager, and an external digital health technology partner. “Technology has been a big enabler, both as a route to provide interactive education to our patients even when seeing them remotely, and also to connect us as a team,” she wrote in her recent blog on the project.

A final key ingredient was the networks, contacts and evidence built as part of the projects. Project leads said that being able to connect with others through Q Exchange and the Q community has made a real difference.

What next?

The Royal Berkshire NHS Foundation Trust chronic kidney disease management project is already putting plans in place to expand into East Berkshire renal services and further West Berkshire GP practices and exploring whether the initiative could be rolled out across this region. They are also looking to expand the number of languages available in the programme and to extend the curriculum to cover additional topics.

The LSBU kidney care project now has the sign off and support it needs to move to the next stage of  a pilot with Barts Health NHS Trust. The project lead and technology company will continue to work with the trust teams until the system is implemented and sustainable.

Vinehealth’s self-management app is now being rolled out to patients across the UK through a number of charities and NHS trusts and is already in use by many thousands of patients. The team is also working with commissioners and clinicians to share patient data with trusts, with patient consent, to inform management decisions and enable better delivery of care to those who need it in the community.

Patel said: “It’s great to see commissioners, healthcare professionals and technology partners all working towards a common goal of better patient care, and to know that patient needs are at the very centre of this conversation.”

Interested in finding out more about the projects? Get in touch with the people behind them on the project pages in related links to the right of this article.