Using an app to remotely monitor rheumatoid arthritis (RA)

Rheumatoid arthritis highlights the challenges of managing long-term conditions.

A poorly controlled disease leads to:

• pain
• disability
• a lower quality of life
• reduced productivity at work
• joint replacement surgery
• higher healthcare costs
• higher mortality

Therapeutic advances mean that remission is an achievable goal in a treat-to-target strategy. Disease activity is the core outcome to measure and guide treatment response.

Clinicians help patients manage their condition (including preventing progression and complications) through infrequent hospital outpatient appointments every 6 to 12 months.

Situation

Assessing RA disease activity relies on patients reporting symptoms and flares. However, patients struggle to accurately describe these in their brief and infrequent outpatient consultations. This results in incomplete and inaccurate information, which may lead to poor treatment decisions and worse outcomes.

Aspiration

The team wanted to digitally collect data to understand RA symptoms, signs and experiences away from the clinical setting.

This would give clinicians a clearer picture of the disease between visits. It would also help researchers answer questions that have been impossible to address.

An integrated symptom tracking system will also mean that appointments can be scheduled according to clinical need and deliver ‘just-in-time’ interventions.

Daily data to collect includes:

• pain
• fatigue
• sleep
• wellbeing
• coping
• function
• morning stiffness

Weekly data to collect includes:

• the number of tender and swollen joints
• flares
• work employment and productivity

An optional disease diary would also help patients record their experience in more detail.

Solution and impact

During a clinic consultation, the rheumatologist invites patients to start tracking their symptoms.

Patients download the Remote Monitoring of RA (REMORA) app and complete user authentication using NHS login. They keep track of their daily symptoms in the app.

Symptom data is automatically sent to a central database and stored alongside the patient's consent. This follows Fast Healthcare Interoperability Resources (FHIR) standards.

Visual summaries of symptom data are integrated into the Trust’s electronic health record (EHR) system. Clinicians can securely view the patient’s summary in the EHR to discuss it at the next appointment without having to log in again.

REMORA successfully integrates frequent symptom reports from a smartphone app into the EHR.

Functionality

• REMORA is a smartphone app available on Android and, shortly, iOS operating systems.
• The app transfers patient reported outcome measures from their smartphone into their EHR.
• The app uses NHS login to authenticate patients and secure their data.
• The patient’s data is transferred to a central database and stored on an external cloud.
• The data is available to healthcare professionals alongside the patient’s EHR.
• 1 week of daily data stays on the patient's smartphone to generate trend charts for them.
• A diary helps patients record their experiences and they are the only people who can see the data.

Capabilities

• Patients can discuss their results with the healthcare professional during routine clinic appointments.
• Patients can remotely record their symptoms using the app on their smartphone.
• The diary helps patients to discuss their condition with healthcare professionals.
• Data is not currently checked in between clinic visits, so patients need to contact their healthcare professionals as normal if they have concerns in between appointments.

Scope

• REMORA lets patients remotely enter data on their smartphone.
• Healthcare professionals can view the data alongside the patient’s EHR as part of their standard outpatient appointment.

Key learning points

• Patient engagement is necessary, particularly to help design the system and user material.
• Ensure the funding of all services that deliver the system is clear to avoid additional unexpected costs.
• The project should have contingency funding to allow for unexpected events. The more unknowns about the system and the more innovative the proposal, the greater the contingency should be.
• Ensure roles, responsibilities and accountabilities are clear and defined across all suppliers.
• Where possible, systems should be developed using existing technical services. Alternatively, recognise that developing new services carries a risk and the necessary time and costs should be included in the planning.
• Existing systems and services should be documented to allow any other consumers to easily integrate with them.
• Make sure information governance and legal teams are involved in creating the Data Protection Impact Assessment.
• Testing systems should be planned, robust and repeatable.
• Planning tests (including designing any test data, creating test accounts, and the mechanism and equipment needed to test individual system components) should be included early in the project.
• Ensure the system is compliant with all NHS standards including the clinical risk management and the associated clinical safety officer assessment. In particular, the risk management process should be established early in the project lifecycle.
• Establish clear ownership of the end-to-end system architecture to ensure the impact of technical issues and design decisions are fully understood.

When setting up the patient and public involvement (PPI) group, remember to:

• establish the PPI lead and identify candidates to recruit
• collect and store personal information relating to the meetings, including the frequency and content
• consider diversity and equality
• think about how you will communicate and share information
• hold meetings and workshops remotely
• consider how to reimburse participants

Digital equalities

• Patients who cannot use or access the technology are managed according to usual clinical care. Healthcare professionals are reliant on the patient’s descriptions and their recall during the infrequent outpatient consultations.
• Digital inequalities is 1 of the 4 work streams of a REMORA2 programme. The team will carry out qualitative work to understand the barriers to participation. They will revise supporting materials to minimise digital exclusion.

Key quotes

“Many of us experiencing RA can relate to the frustrations of 6-monthly clinical outpatient consultations. Although these appointments are important and valued, it’s often difficult to remember how you have been on a day-to-day basis because, on a good day, you tend to forget about the bad days.

Those long gaps between clinic visits can really test us to form an accurate picture of how we had been during the previous months.

Completing the REMORA has empowered me to monitor and build up a picture of my own symptoms and flares in an objective way and really helps prepare and direct my clinic appointments with the clinician.”

Karen Staniland, patient living with RA and REMORA patient partner

Find out more

REMORA case study from The University of Manchester

Findings from the REMORA study from the Oxford Academic

Key contact

Professor Will Dixon, Professor of Digital Epidemiology, Honorary Consultant Rheumatologist, Salford Royal NHS Foundation Trust

will.dixon@manchester.ac.uk