When I wrote the Tap Tap What’s App? blog for the AStretch community in February, little did I know that digital health would be catapulted to the fore of rheumatology practice within weeks. I’ve heard the expression ‘3 years worth of work done in 3 weeks’which has become ‘4 years worth of work in 4 months’. That is the pace at which rheumatology services along with other frontline services mobilised with incredible resourcefulness and resilience to quite literally become digital overnight during the peak of the Covid-19 pandemic.
Rheumatology services have faced an unprecedented challenge to provide ongoing disease and blood monitoring for a proportion of the 2.2 million extremely vulnerable shielding patients during the Covid-19 pandemic. During the early weeks of the pandemic services needed to be rapidly restricted to essential need only as a result of lockdown measures, staff sickness and redeployment. Despite these challenges, rheumatology services have emerged to becapable of delivering flexible and responsive care achieved through rapid adoption of new digital models of working.
With attention turning to recovery and restoration of services, the focus must remain on the needs of the end user in order to ensure the rapidly adopted digital ways of working offer sustainable value and solve the problems which existed prior to the Covid-19 pandemic. Digital health opportunities are plentiful in rheumatologywith the potential to enhance access, clinical outcomes, treatment adherence and research. Good rheumatology services in the digital era will need to designed , be data-driven and measured on making every clinician-patient interaction count, be it remote or face to face, if the ambition of out-patient transformation in the Long-Term Plan is to become reality. Digital can go beyond savings: it can enhance, offer flexibility and choice where previously there may have been none. We must go beyond thinking it is a dichotomy of remote or face to face. Thinking‘digital-first’ for the prevention, monitoring and self-management of many rheumatological conditions could prepare our services for a possible second wave and beyond as well as provide for all our long-term patients healthier futures.
Tap Tap…..What’s App?
Firstly, I must apologise for my attempt to bring the classic ‘Knock Knock’humour of my past into the digital present. I suspect it has not worked. However, it has introduced the topic of Digital Health in Rheumatologyfor the next blogpost in the AStretch 2020 series. Last month you heard from the inspiring Marie-Therese McDonald about the ‘five reasons people with Axial Spondyloarthritis (AS) might not do physiotherapy exercises and what might help’ https://www.astretch.co.uk/communications. In this blogpost I will introduce some opportunities digital health practice may present in supporting adherence to treatment including exercise.
What problem(s) are we trying to solve with Digital Health in Rheumatology?
I work in a busy rheumatology service like many of you. Patients with inflammatory arthritis, including Axial Spondyloarthritis (AS), make up the largest group of service-users. The realitycan mean long waits to be seen with clinic flow reliant upon well patients. Given the primary purpose of a rheumatology out-patient appointment is ongoing specialist input for a long-term condition, how much of this input needs to be delivered in an out-patient setting? How much of the important education and exercise guidance frequently delivered by rheumatology physiotherapists is currently delivered remotely (or could be) through the use of digital technology?
Digital health offers a new dimension for rheumatology patient care. Overcoming the constraints of distance, location and time by deploying technology offers considerable benefit to both service provider and user in supporting care from within the home or at work. Despite this tantalising opportunity, patients and clinicians generally make poor use of digital technology to manage healthcare. Understanding this is critical in overcoming the challenge for better use.
What is Digital?
To understand the impact digital health could have in rheumatology care, we must first understand what ‘digital’ means? Digital is “applying the culture, processes, business models and technologies of the internet erato respond to people’s raised expectations”(NHS Digital). Mobile devices are used on a daily basis to manage many aspects of our lives including travel, finance and social. Yet when it comes to our health we are playing catch-up. The challenge of transforming care through digital is not technical, it is organisational. It is about changing the way we work. Our working culture.
I will focus on four key areaswhere rheumatology could harness the benefits of digital health to support how we might deliver care.
Whilst the overarching aim of the NHS Long Term Plan and The Topol Revie were to redesign how out-patient care is delivered in the digital era, rheumatology appointment planning remains relatively arbitrary. It is a challenge for rheumatology services to identify which patients would benefit most from more flexible appointment scheduling e.g telephone, video or face-to-face follow-up. Telemedicine can offer a flexible and responsive service model to manage a fluctuating and unpredictable disease such as AS. However, it is important to acknowledge concerns that technology does not come at the cost of humanity but rather“remote access will change clinician’srelationships with patients for the better” (Matt Hancock at the King’s Fund Digital Care Conference, 2019). From my own experience of embedding electronic PROMs into routine rheumatology care, the capture of PROMs prior to clinic attendance has brought about three frequently encountered benefits:
- As a clinician I am able to prepare better for a consultation and focus on the main issues e.g fatigue.
- Patients report they take time to complete the PROM and think about what may have caused a change of symptoms – without feeling rushed to complete it in clinic
- Patients see a clear link between the information they provide impacting on the decisions about their care.
There are a number of resources emerging to support clinicians to develop the skills and confidence to lead telemedicine clinics. Why not watch this video for some practical ideas http://bit.ly/nonF2Fclinics
Running a telephone/video AS clinic utilising electronic PROMs – Winner of the Clinical Prize, British Society for Rheumatology, 2019
The use of digital technologies for remote monitoring in rheumatology has the potential to empower patients to monitor their health outside of the traditional face-to-face setting whilst providing clinicians with meaningful data to support shared clinical decision-making. The proposition of remote monitoring is twofold: To offer more flexible care to the right person at the right time e.g when in flare. Secondly, to support more flexible appointment scheduling, including appointment deferment for whom an annual review is sufficient.However, there is a current practice gapbetween the use of paper-based PROMs collected in clinic and the timely remote capture of data when it really matters.
I am currently involved in a project setting up a new remote monitoring service in rheumatology. In builds on the everyday practice of text messaging. Patients are sent a PROM each month via text message. Patients can also text into the service if they feel they need support between appointments. There have been high levels of engagement with a remote relationship between patient-provider being developed through data-sharing. A future focus of this project will be to understand the impact on clinical outcomes of providing care remotely and the behaviour of both patients and providers in utilisation of rheumatology appointments.
What have patients told us about this new service?
“Getting the text from you gave me the confidence that the right thing to do was to contact the service, to know I wasn’t wasting anyone’s time.”
“I have many mini-flares and know the pattern of these and usually wait for these to settle. I generally know when treatment needs escalating.”
Health behaviour change & self-management
Self-management describes an individual’s ability to manage the symptoms and treatment of a chronic condition, in addition to the psychological, social and lifestyle consequences. With AS this can mean having to manage fatigue, pain, stiffness, work impairment and mental health problems on a daily basis. For self-management to be successful, engagement in active health behaviour change may be required. Examples of health behaviour include smoking cessation, increasing physical activity levels and engagement with regular therapeutic exercises. The use of the NHS website www.nhs.ukto ‘prescribe’ high quality health behaviour advice and signposting to the National Axial Spondyloarthritis Society www.nass.co.ukis a really great place to begin to support self-management.
I have been involved in the development of the Axial Spondyloarthritis Know-How (ASK) self-management programme as an example of how digital has been harnessed to engage and support self-management of AS. The ASK digital toolkit comprises a short film viewable before attendance to a group education and exercise workshop. Patients view the film in order to manage their expectations of the group intervention and rate the film highly in supporting attendance. The toolkit also includes an interactive PDF self-management handbook which patients can use to record, reflect and refer to a range of resources to support problem-solving, goal-setting and health behaviour change. Patients have continued to use the self-management handbook, choosing either mobile, tablet or computer to continue engagement with the ASK resources following attendance.
ASK was awarded the British Medical Association Patient Resource of the Year 2019 on the basis:
” Although it (ASK digital toolkit) is designed to be used in conjunction with attendance at a physio group session it deserves a much wider rollout potentially to all patients in the UK with the condition. The digital format should make this easily achievable. It could also provide lifelong support for the patient to record, reflect upon, and monitor their illness and empower their self-sufficiency. This is an ambitious and exciting toolkit.”
Click here to watch a short film about ASK: http://bit.ly/ASKFilm.
Wearables & Apps
Rheumatology has seen advances in the development of a number of mobile applications (apps) to support self-care. The apps frequently have the ability to track and monitor PROMs, mood, physical exercise, sleep and other lifestyle factors. An example is the MySpA app where patients can upload an exercise video or photo into a ‘library’ adding to prescribed exercise within the app. Wearable devices also offer an opportunity for patients to track and monitor physical activity levels in accordance with national recommendations. There is also an opportunity for activity tracker data from wearable devices to have meaning in a clinical context, for example, in a study by Gossec et al 2019 exploredremote monitoring of physical activity as a predictor for flare in AS. Read more here: http://bit.ly/ASWearables.The exploration of activity levels and disease activity is clearly an exciting area for rheumatology physiotherapists who frequently prescribe exercise as a disease-modifier.
Digital Health opportunities are plentiful in rheumatology. Rheumatology services can achieve the flexibility many patients with long-term conditions want if they begin to think digital-first for the prevention, monitoring and self-management of many rheumatological conditions in the digital NHS of the future.
Thank you for reading