Project: REmote MOnitoring of Rheumatoid Arthritis (REMORA)
What are we trying to do?
We’re involving patients, the public, clinicians, managers, IT staff and researchers to develop a smartphone app which allows patients to log rheumatoid arthritis (RA) symptoms regularly between appointments. The information is sent directly to the patient’s electronic hospital record, as well as to a research database. The final outcome will be a fully developed smartphone app and a toolkit that will support the implementation of similar remote monitoring projects across the NHS.
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. Patients sometimes find it difficult to accurately remember the peaks and troughs in their symptoms between clinic visits, which can often be months apart.
This work means that the patient can become more involved by viewing and discussing the app information with their clinician at the next appointment so that, in future, treatment and appointment frequency can be more closely linked to patient needs. The data will also support novel research into RA (for example, understanding the frequency and causes of disease flares).
How will we do it?
Round 1 – Recruitment and development
We recruited 26 patients with RA as participants to co-design and test REMORA. Patients were recruited by being made aware of the REMORA study by their clinician and signposted to the research team during scheduled outpatient appointments at Salford Royal NHS Foundation Trust (SRFT). We engaged each recruited patient participant for an interview or focus group, as well as working alongside researchers in the field of RA across the UK, and IT development staff based at SRFT to take on board views from multiple stakeholders and ensure it was fit for purpose.
Round 2 – Concept testing
The testing stage of the study involved two phases of patients with RA using the REMORA app to complete daily, weekly and monthly questionnaires about their disease activity. Each phase of testing was initiated and closed with a standard outpatient consultation, and followed-up with a post-testing interview so that participant experiences and recommendations for improvements could be recorded.
The first of these was a four-week phase to establish proof of concept and demonstrate a working design with patient recorded data appearing in patients’ hospital records. This phase was closely supported by the study team who were in regular contact with the eight participants, and concluded in April 2016.
Preliminary findings from the first testing phase were very encouraging, with regular remote data entry and positive feedback from participants in the initial testing period. Patients have commented:
“I think it makes it more personal to you…you’re not just a statistic sort of thing… So yeah, I think it would give you a bit more confidence too.”
“If it’s on the screen while he’s talking to me he’s got more of an insight in what I’ve been putting in…it’s a shared conversation between us.”
Round 3 – Extended testing
The second testing phase was designed to more closely mimic real-world settings. 24 patients each tested REMORA over three months to reflect a realistic gap between potential outpatient appointment dates. In order to preserve the integrity of app testing, contact between the study team and participants was limited to a minimum during the testing period. This testing phase concluded in December 2016.
We will be completing interviews with all of the participants in early 2017, as well as undertaking analysis of the interviews and of the remote monitoring data from the app. These data will support our evaluation process and development of the study outputs, which will include an implementation toolkit describing the key lessons from our experience of the REMORA study.
Who we are working with?