Around 1% of the UK population is affected by rheumatoid arthritis (RA), a chronic autoimmune joint disease (for which there is no cure) that causes pain and inflammation. The symptoms of RA can fluctuate unpredictably over time. Prompt treatment during disease ‘flares’ is vital to prevent progressive joint damage and irreversible disability. However, traditional appointment systems don’t always make this easy: appointments may be too far apart to give an accurate picture of someone’s experience, or not be at a time when patients most need to be seen.
In 2020, a new remote monitoring service for RA was rolled out across three NHS trusts in south-east London aimed at addressing just this problem. The service is designed to address the challenges of managing this chronic autoimmune joint disease by enabling patients to provide crucial insights into their symptoms remotely from wherever they are. This service invites patients each month, via text message, to fill in a questionnaire about their symptoms. If their answers show they are having a flare, the service can provide tailored advice and support. Patients can also get in touch with a clinician via text.
Since 2021, King’s Improvement Science (KIS), a team of improvement specialists that are part of ARC South London, have been evaluating the rollout of this service, working with NHS and patient partners. We wanted to know what patients and staff thought about the service, and what the existing research told us about similar programmes. Now, in 2023, we’re in the final dissemination phase of the project, and were delighted to receive funding from the King’s Engaged Researcher Network to run a livestreamed event as part of a series hosted by the National Rheumatoid Arthritis Society (NRAS), discussing not only what we found, but how we worked with patients individually and collectively to shape the research.
NRAS is a patient-led organisation we have worked with throughout the project; they helped us bring two people with lived experience of RA onto the research team as paid partners. We also ran workshops with a wider group of patients at key points in the project. This dual approach enabled us to balance building long-term, in-depth working relationships with getting a range of views. Emma-Jayne and Mary-Ann, our lived experience team members, have written about working with us here. They are also named as co-authors on the academic manuscript (currently under review), alongside the clinicians and researchers on the team, which reflects the influence they’ve had on the project and the amount of work they’ve put in.
The livestream went out via all NRAS’ social media. The team each presented an area of the work, with Emma-Jayne and Mary-Ann presenting their experiences of the service and the research project. The service’s roll-out against the backdrop of the Covid-19 pandemic was inevitably a key theme in the discussion. Toby Garrood, rheumatology consultant at Guy’s, presented the significant scoping work that was done with patients pre-Covid to make sure the technology was accessible and the service made sense to patients. Emma-Jayne’s experience of texting in when she caught Covid in a pre-vaccine wave, and receiving a rapid reply that enabled her to access treatment and avoid becoming severely ill, highlighted how urgently that work was put into practice in response to a new and terrifying situation.
On the other hand, an important theme in the presentations was that staff working at the roll-out sites – the hospitals who were newer to remote monitoring – used the service much less with their patients than the hospital which developed the technology. The reasons for this were complicated but also had to be analysed in the context of a pandemic-stricken health service having to adapt in multiple ways at once.
You can watch the video of the livestream. We hope that having the video available for the future means that we can keep spreading ripples of engagement out from the event itself, not just among patients but among clinicians and fellow researchers who will be able to see from this the benefits of long-term collaborations with patient communities.
This blog was written by Rachel Rowan Olive, a former patient and public involvement (PPI) coordinator at King’s Improvement Science, who has been involved in this RA research.
Read more about the Evaluation of remote monitoring in rheumatology outpatients across three NHS trust in southeast London
Read an article about the evaluation in the National Rheumatoid Arthritis (NRAS) Society members magazine (Autumn 2023)