Patient-reported information collected electronically in between rheumatology outpatient clinic visits: development of e-infrastructure to support clinical care and research (REMORA)

What did we do?

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 patients’ electronic health records for use during real clinical consultations
  • To a research database as anonymised data to help investigate the app usage and its benefits

 

Why was 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.

 

This study aimed to pilot this new approach and determine the feasibility of using patient-reported app data to support consultations

 

How did we do it?          

The REMORA study consisted of three rounds

  • Round 1: Recruitment and development

26 patients were recruited to co-design the REMORA app. We also consulted with clinical staff, researchers, IT staff, and relevant experts within the UK to design a tailor-made app that could best capture and monitor the experience of living with rheumatoid arthritis.

 

  • 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, followed by a consultation with a rheumatologist. The feedback from this testing allowed us to monitor how successful the app was and make improvements to its design for the future.

 

  • Round 3: Extended testing

Following the updates to the app from the initial testing phase, round 2 consisted of an extended testing phase, which 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, with clinic appointments held again before and after the testing phase, allowing for real-life treatment decisions to be made based on the app data.

 

We also held regular meetings with a PPI group 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.


Who did we work with?
Arthritis Research UK

Health eResearch Centre (HeRC)

Salford Royal NHS Foundation Trust

 

Downloadable resources

 

 

More information
For further information about the project, please contact Susan Howard (Programme Manager)



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