REmote MOnitoring of Rheumatoid Arthritis (REMORA)
This study involved the development, testing and evaluation of a smartphone app for remote monitoring of symptoms in people living with rheumatoid arthritis (RA). Designed in partnership with patients, clinicians, managers, IT staff and researchers, this app allowed patients to log daily symptoms and the impact of their RA between clinic appointments. The data was sent directly to the patient’s electronic hospital record in order to inform the consultation, and anonymised data was also sent to a research database. This study aimed to pilot this new approach and determine the feasibility of using patient-reported app data to support consultations.
Why is it important?
At present, treatment for patients with RA is guided by asking patients about how their condition has changed at each clinic appointment. Clinic visits may be months apart and patients sometimes find it difficult to remember accurately the changes in their symptoms between these visits.
This study meant that patients and their clinician could discuss how the patient’s RA had changed since the last appointment, based on the patient’s own data collected via the app, and presented as a graph within the electronic patient record. Remote monitoring may enable treatment decisions and appointment frequency to be more closely linked to patient needs. The data collected in this study also supports novel research into RA: for example, the data are currently being analysed to improve our understanding of the frequency and causes of disease flares.
The study consisted of three rounds:
Round 1 – Recruitment and development
26 patients with RA were recruited and interviewed to co-design the REMORA app. Views were also sought from clinicians, UK researchers with expertise relevant to the study, and IT development staff based at Salford Royal Hospital. This ensured the app would be useful for all of these groups.
Round 2 – Concept testing
The first stage of testing consisted of eight patients with RA using the REMORA app to complete daily, weekly, and monthly questionnaires about their disease activity over the course of one month. The app testing began following an initial hospital outpatient consultation, and concluded one month later with a second consultation where the app data were available in the electronic health record. This allowed CLAHRC GM to test how well the data flowed from the app to the record and fix any “bugs”. The data collection was followed-up with a post-testing interview so that participant experiences and recommendations for improvements could be recorded, and any necessary app updates undertaken.
Round 3 – Extended testing
This extended testing phase was designed to more closely mimic real-world settings. 20 patients each tested REMORA over three months to reflect a realistic gap between potential outpatient appointment dates. Like the testing in Round 2, clinic appointments were held before and after the data had been collected. Interviews were then conducted with study participants, clinicians and other stakeholder groups to seek their views on the benefits and challenges of remote monitoring and the integration of patient-generated data into the electronic health record.
Regular meetings with a PPI group were held consisting of 6 members who live with RA throughout the study. The group were consulted to contribute to study design, app development, dissemination of findings, and other key elements.
Analysis of the data collected during this study found that patient and clinician participants found the app usable, that it collected appropriate data and provided insight into the variation of RA symptoms through time. Additionally, the app data helped with shared decision making between patient and clinician during consultations. In particular, it was able to improve recall and identified gradual changes in symptoms. The study also identified a series of challenges that still need to be met in order for remote monitoring and integration of data into the NHS to be adopted more widely. Full findings and outcomes of the study are still being developed and will be detailed in the study reports, publications, and other outputs.
In addition to the main study outcomes, a short video was produced to summarise the study design, demonstrate the app and present selected views of some of our participating patients, clinicians, and researchers which can be viewed here
The REMORA study has shown a proof-of-concept in collecting patient-reported RA symptoms as well as successfully transferring this patient data directly into electronic health records. The majority of feedback from the patients and clinicians in the study showed high levels of satisfaction with using the app over three months and were particularly positive about the effect the app data could have on treatment decision making. The next stage of REMORA will aim to investigate how remote monitoring could be used on a larger scale and how it can be adopted within the NHS as part of usual clinical care.