The Key to Evaluation: involving experts by experience in our research on remote monitoringMay 25, 2023
Supporting remote monitoring has been an important focus of the HIN over recent years. In 2019, we brought together colleagues from Guy’s and St Thomas’, King’s College Hospital, Lewisham and Greenwich and the South East London Clinical Commissioning Groups with the aim to improve outpatient experiences for a cohort of patients with long-term conditions, with rheumatology chosen as the focus area. Fast forward to 2021, the HIN began a project with Kings Improvement Science, working closely with Experts by Experience, Emma-Jayne Adams and Mary-Ann Palmer to inform research on remote monitoring for rheumatoid arthritis (RA). This project has allowed the experts to use their personal experiences of RA to make a difference to others living with the same condition.
Around one per cent of the UK population is affected by RA, a chronic autoimmune joint disease that causes pain and inflammation, for which there is no cure. Symptoms can fluctuate unpredictably over time, with worse periods known as ‘flares’. It’s important for patients to get treated quickly during a flare to prevent progressive joint damage and irreversible disability. This doesn’t always fit with the way traditional face-to-face services have worked; appointments may not fall at times when patients most need to be seen, or at the right times to accurately capture a variation in symptoms. Remote monitoring can help to overcome these challenges, by allowing more regular oversight of symptoms so that patients can signal when they need to be seen most.
In 2020, a new remote monitoring service for RA was rolled out across three NHS trusts in south east London. This service involves inviting patients each month, via text message, to fill in a questionnaire about their symptoms. If their answers indicate they are having a flare, the service can provide tailored advice and support. Patients can also get in touch with a clinician via text. They have expressed a wide range of positive outcomes from the survey, including time saved from filling out long forms and attending appointments, as well as a happier, healthier mindset. You can find out more about the service and patients’ views by watching the video on this page.
For the past two years, KIS, NHS and patient partners have played a fundamental role in evaluating the rollout of this service. We wanted to know what patients and staff thought about the service, and what existing research can tell us about similar programmes.
"Having experienced the highs and lows of rheumatoid arthritis for many years, we wanted to use our lived experiences and skills to help make a positive difference to patient care and the lives of others with the illness."Emma-Jayne Adams and Mary-Ann Palmer, Experts by Experience
Patients were overwhelmingly positive about the remote monitoring service and engagement was high. In contrast, staff views were more mixed and engagement beyond the pilot site was low, which may be explained by barriers specific to roll-out sites. Equal levels of patient and staff engagement are required for the service to be sustainable.
Patient and public involvement was integral throughout this work. One of the stages that is often missed in involvement facilitation is working with existing patient networks and groups, which means reinventing the wheel is very common. To avoid this we established a close working relationship with the patient-led organisation, National Rheumatoid Arthritis Society (NRAS). NRAS helped us bring in Emma-Jayne and Mary-Ann, who both live with 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.
Our Expert by Experience team members have written more 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 have put in. The full results of the evaluation will be published later this year.
This service is a strong example of the ongoing importance of involving people in projects and working in partnership with them to co-produce health innovation. In line with our long-term involvement strategy at the HIN, we are continuing to work with our own lived experience partners across various programmes to embed involvement as a key culture of our organisation.
If you would like to hear more about the remote monitoring service, the evaluation results, or patient involvement in the project, we’d love it if you could join our livestreamed panel and Q&A on 28 June at 7pm, via the NRAS social media and YouTube channels.
You are also welcome to join the involvement mailing list for news and opportunities to get involved with KIS.