REmote MOnitoring in Rheumatoid Arthritis (REMORA) v1.0
Research type
Research Study
Full title
Design, implementation and evaluation of remote data collection from patients with rheumatoid arthritis, for health and research purposes
IRAS ID
167533
Contact name
William G Dixon
Contact email
Sponsor organisation
University of Manchester
Duration of Study in the UK
1 years, 11 months, 30 days
Research summary
Research Summary
Treatment for patients with rheumatoid arthritis is guided by monitoring the patient’s changing disease severity through time. At present, clinicians managing rheumatoid arthritis have few (or no) objective measurements between clinic visits in contrast to other chronic conditions like diabetes. Measuring changing disease severity in between clinic visits would have many clinical benefits. These include informing clinical decision making, improving the efficiency of consultations, improving communications and aiding patient self-management.
REMORA is a pilot study to design, implement and evaluate a system of remote data collection from patients with rheumatoid arthritis for health and research purposes. The project asks whether electronic collection of patient-reported outcomes directly from patients in between clinic visits can enhance clinical care and provide a sustainable source of data for research. The project will test the feasibility of delivering such a system, including a health economics evaluation. The key outcome is the information to inform a case for future investment or future research, both of which move towards the goal of improving care for patients with arthritis.
In two pilot rounds (lasting one and three months respectively), patients attending the Rheumatology Outpatients Department at Salford Royal NHS Foundation Trust will submit their outcomes data (such as pain and fatigue) securely by mobile telephone to their clinical record at the hospital and to a research database at the University of Manchester. The project will determine the views of stakeholders (patients, clinical staff including GPs, hospital managers and IT staff, researchers), through co-design with stakeholders of the electronic system, focus groups, interviews, clinical consultations and health economics questionnaires. The pilots will also assess data quality and the pattern of disease severity between clinic visits. The final output of the project will be a toolkit to inform the implementation of similar remote monitoring projects within the NHS.
Summary of Results
The study set out to establish the acceptability and feasibility of collecting daily patient-generated health data (PGHD) using smartphones and integrating PGHD into the electronic health record, using the example of RA.
The Remote Monitoring of RA smartphone app was co-designed with patients, clinicians and researchers using qualitative semi-structured interviews and focus groups, including selection of question sets for symptoms and disease impact. PGHD were integrated into the electronic health record of one hospital and available in graphical form during consultations.
Acceptability and feasibility were assessed with 20 RA patients and two clinicians over 3 months. A qualitative evaluation included semi-structured interviews with patients and clinicians before and after using the app, and audio-recordings of consultations to explore impact on the consultation. PGHD completeness was summarized descriptively, and qualitative data were analysed thematically.
Patients submitted data on a median of 91% days over 3 months. Qualitative analysis generated three themes: RA as an invisible disease; providing the bigger picture of RA; and enabling person-centred consultations. The themes demonstrated that the system helped render patients’ RA more visible by providing the ‘bigger picture’, identifying real time changes in disease activity and capturing symptoms that would otherwise have been missed. Graphical summaries during consultations enabled a more person-centred approach whereby patients felt better able to participate in consultations and treatment plans.
Remote Monitoring of RA has uniquely integrated daily PGHD from smartphones into the electronic health record. It has delivered proof-of-concept that such integrated remote monitoring systems are feasible and can transform consultations for clinician and patient benefit.REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
15/NW/0172
Date of REC Opinion
13 Mar 2015
REC opinion
Favourable Opinion