Patients with long-term conditions (LTCs) require continuous monitoring and support to improve their quality of life and prevent complications. Yet with specialist nurses already caring for more patients than they can cope with, resources are overstretched. Typical of the growing LTC cohort in England are sufferers of diabetes. Younger diabetes patients are costly to work with, and notoriously hard to engage with. A collaboration between University College London Hospitals (UCLH), Microsoft and its healthcare partner Tribal has come up with an effective solution based on proven customer management software used in commerce, as Paul Curran explains.
An outmoded system of care
The way we manage long-term conditions has massive implications, not just for patients and healthcare professionals, but for society as a whole. Not only is it expensive - diabetes alone costs the NHS over £1m an hour - but the economic cost of avoidable disease is even greater.
According to Peter Hindmarsh, Professor of Paediatric Endocrinology at UCLH, over 23,000 children and young people in England now have diabetes: “Type 1 is increasing in the under-fives and one in 700-1,000 children now have it; whilst type 2 is also increasing, particularly among certain ethnic groups and in areas of social deprivation.
“Worse still, the number of youngsters with the condition is likely to grow rapidly due to demographic and lifestyle changes. The age of patients makes managing and financing the treatment of childhood diabetes especially challenging since it involves several professionals and high levels of patient and parent involvement.”
New forms of treatment - like insulin pumps - and new ways of working with patients can deliver results, but Hindmarsh says more than eight in ten children are still not achieving recommended blood glucose concentrations.
“It’s a battle worth fighting, but it means young patients and their families need more timely access to useful information about managing the condition. Alas, when it comes to treating long-term conditions, service provision lags behind other European countries and remains firmly medico-centric. Indeed, the system as a whole is outmoded, poorly designed, and has inherent safety and quality problems.”
What patients need
NHS best practice guidelines for childhood diabetes recommend ‘actively engaging, empowering and supporting effective self-care’, yet Hindmarsh says existing methods needed radical redesign to achieve these goals, for example:
- A system giving patients and families 24/7 advice via helpline, SMS, email and social media
- The ability to book reviews and education sessions with healthcare professionals
- Access by clinicians to shared guidelines and information to aid patient independence whilst maintaining control over risk
- The ability for clinical staff to read and add entries to electronic records from any location
- Decision support trees for children, parents and carers - such as staff within schools and early years environments - for sick days, hypoglycaemia, custom requirement for exercise and other non-standard situations.
In his determination to fulfil these needs, Hindmarsh set up a collaborative project with Microsoft and technology partners, Tribal, to develop a computerised ‘patient relationship management’ (PRM) tool. “Our aim was to mimic the way retailers use customer relationship management (CRM) software to track their dealings with consumers over time and deliver a much more joined-up service.” Empowering patients and clinicians The project began with a series of surveys and focus groups - simulating the patient journey from diagnosis through to the point where patients and their families felt comfortable about managing the condition. “From this, it was clear they wanted one place to go for medical advice, videos on techniques for using insulin pumps, useful website links, and so forth,” says Hindmarsh.
“As well as being able to upload blood sugar data and insulin pump settings securely online or via mobile phone, patients and their families can now use the PRM portal to access information online about their condition, book appointments, agree agendas in advance and contact team members on a 24/7 basis. It means individuals can check their progress, compare values with peers and benchmark standards, and most importantly, anticipate any complications that might lead to a hospital admission.
By enabling two-way – and even multi-lingual - communication via email, text and social media sites - as well as traditional correspondence – the PRM system not only improves the patient experience and makes them partners in their own care, but also moves them towards self-management by turning them into expert patients.”
At the same time, the solution meets the many needs of clinicians. It gives them secure access to patient data and information; it plugs seamlessly into the NHS’s EDIS document interchange system to swap data with GPs; and it provides a low-cost way to distribute training and educational information to patients. Moreover it allows authorised third-parties, such as schools, to access information (or subsets of it) securely.
A replicable system
Above all, Hindmarsh says the new PRM solution for diabetes unlocks consistent treatment paths based on real best practice to ensure patient safety and high-quality care. After extensive piloting, he says the system has successfully emulated and extended the contact and communication elements of a classic CRM solution and is being used on a daily basis by young diabetes patients.
“I believe that in future, the PRM approach will be ideal for helping patients with other long-term conditions such as asthma, heart disease and cancer, and an economically sound way to encourage healthy behaviours in community outreach schemes. At the end of the day, empowered patients, relationship management, information sharing and technology-enabled change offer answers to some of the most serious challenges facing healthcare today,” he adds.
to view Professor Hindmarsh describing how diabetes can be managed and debilitating complications avoided by providing young people with digital tools to help manage their conditions.
Employing some 1,300 staff, Tribal supports the delivery of education, learning and training services across five continents. It builds world-leading software, supports adult learning, careers and professional development and provides school inspections and improvement services both in the UK and abroad. It works in partnership with a wide range of organisations, including schools, colleges and universities, prisons and social services, government agencies and employers large and small.
Tribal Group and PRM: