A new champion for patient experience in the design of digital health technologies has emerged from the NHS’s top management. Jenny Sims reports on NHS director Matthew Swindells’ call for more consultation and participation in innovation
Proper patient involvement is something that leading patient advocates like Robert Johnstone, a board member of the European Patients Forum, have been campaigning towards for a considerable time – with varying degrees of success. So Matthew Swindells, National Director of NHS England, was warmly applauded when he kicked off the 2016 King’s Fund’s Digital Heath and Care Congress in July with the message to all stakeholders to get patients – and clinicians – on board.
‘We need, as the NHS, to stop being quite so parochial about every solution and to start creating an environment where innovation can happen – to create an ecosystem for innovation,’ said Swindells. He went on to stress that in the context of digital health, and implementing the NHS Five Year Forward View, patients should be consulted and involved in the design and development of technology tools to help them manage and control their own healthcare.
‘The perfect application for a child with Asperger’s Syndrome would almost certainly be written by the parents of such a child. And the perfect app for young men with HIV would probably be written by the Terence Higgins Trust. They won’t be written by government or big multi-nationals,’ Swindells asserted. He said the economic advantages of giving patients more control was ‘overwhelming,’ pointing out: ‘The vast amount of care that a diabetes patient receives is, by and large, delivered to them by themselves, not by a clinical professional. If we can make that care more efficient and effective, the benefit to the NHS and to the health of the population is huge.’
At the congress, presentations and ‘rapid-fire’ poster sessions on a range of pilots and projects showed that patient and clinician involvement in developing digital tools is happening in some care settings, and others are in the pipeline. But although these tools can transform healthcare, some organisations have been slow to implement them, according to a Nuffield Trust report, Delivering the Benefits of Digital Health Care.
Candace Imison, the Nuffield Trust’s Director of Healthcare Systems, said: ‘While 88 per cent of adults in the UK use the internet, only 2 per cent report a digitally enabled transaction with the NHS. But there is a large appetite for healthcare technology, and the app market is booming. The NHS did benefit from the National Programme for Information Technology (NPfIT) in some areas, but it ultimately failed to digitise the hospital and community sectors, despite an investment of nearly £10 billion,’ she explains. ‘However, we believe that the NHS is heading towards a tipping point. The majority of NHS acute trust CEOs surveyed say they have the technology to support mobile working, e-rostering, patient-flow software and Electronic Health Records (EHRs).’ On greater patient experience, they say: “Technology is rewriting the relationship between patients, professionals and care providers.”’
The Nuffield Trust report says: ‘Patient portals give them access to their electronic medical records. More advanced portals enable patients to track their personal care plans, request prescription renewals, schedule non-urgent appointments, access their health education library and exchange secure messages with their provider.’ For example, the Hurley Group, an NHS GP partnership that runs a number of practices and Urgent Care Centres in London, has developed a platform called WebGP, designed as a ‘first port of call’ for patients seeking primary care. In a pilot study, 18 per cent of patients said they had self-managed an issue for which they had planned to see a GP.
REMORA (remote monitoring of rheumatoid arthritis) using a smartphone app is a University of Manchester pilot study funded by Arthritis Research and the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Greater Manchester.
Dr Lynn Austin, Research Fellow, University of Manchester, says, ‘Rheumatoid arthritis (RA) is a long-term condition that’s often called the “invisible disease”. Treatment is guided by monitoring changes in the disease’s severity.’ However,’ she adds, ‘symptoms can fluctuate over time, and consultations with physicians can be infrequent: six months, a year or even 18 months. A lot can have happened in between consultations, and patients don’t always recall their symptoms – or want to.’ Smartphones offer the ability for regular monitoring between clinic visits and the integration of that data into electronic medical records. An app could better inform patients and clinicians where they’re at.
The Manchester pilot study aimed to ‘design, implement and evaluate a system of remote data collection for people with RA to see whether the electronic collection of patient-reported outcomes (ePROS) directly from patients between clinic visits could enhance clinical care and provide a sustainable source of data for research.’
The study went through three stages. The first involved reaching agreement on the component of the app, developing the systems required to link the collected data to the electronic patient records. The second involved testing the app for a month with eight patients, checking the system for ‘end-to-end’ processes and ‘bug fixing’, and refining the app in response to feedback.
Thirdly, an evaluation of the refined app took place over three months with 24 patients, summarising feedback from a range of stakeholders, and producing an implementation toolkit for the developed app. Patients guided the consultations for self-management outcomes, clinicians for triaging outpatients.
The provisional app asked patients questions about their condition on a daily, weekly and monthly basis. Questions included, ‘Considering your arthritis overall, how would you rate your level of physical wellbeing during the last 24 hours?’ It also asked how long their morning stiffness had lasted that day, whether they had experienced a flare-up in the last week, if they could describe how the flare-up had affected them, and how were they feeling. Early feedback was positive and showed that patients liked being able to see their responses mapped on a graph. Comments included: ‘With a graph, you can see what’s going on.’ ‘It reassured me,’ ‘It’s more personal to you’ and ‘It’s a shared conversation’.
But what does it all mean in practical terms? Where do we go from here? ‘Involve patients as early as possible in the design process to ensure products really match their needs and are easy to use,’ was Robert Johnstone’s rallying cry. His second message to King’s Fund Congress speakers and delegates was also an appeal: ‘We need to mainstream on products’.
So, if Matthew Swindells is going to practise what he preaches, that means he must help ensure the many successful projects spotlighted at the King’s Fund Congress are scaled up throughout the NHS. Watch this space!
You're the expert! Write for The Engine or share your articles, papers and researchAdd your content
Add your content
Sign up for Ignition, our regular, ideas-packed newsletter