Patients to Upload Daily Arthritis Symptoms in NHS First

Researchers at The University of Manchester are to trial a system that allows people living with rheumatoid arthritis to send their daily symptoms securely to their health record, in a first for the NHS.

The technology will help patients answer a painfully difficult question asked by doctors, plaguing them since time immemorial: “How have you been in the last six months?”

The trial is funded by the National Institute for Health and Care Research (NIHR) and Versus Arthritis.

The Remote Monitoring of Rheumatoid Arthritis (REMORA) system allows patients to download a symptom tracking app to their smartphone or tablet and sign in at home via NHS login.

The system could revolutionise the care of people living with a long-term conditions, who are often asked by doctors to describe their symptoms since they were last seen.

Professor Will Dixon from The University of Manchester is co-lead for the REMORA study and is a consultant rheumatologist at Salford Royal Hospital.

He said: “It can be difficult for patients to recall and describe the ups and downs of their health in a few minutes during a consultation.

“By tracking symptoms day-to-day and making them automatically available at consultations within the electronic medical record, we will generate a clearer picture of how someone has been in the last six months which could have a transformative impact on treatment and care.”

The research team are about to start the clinical trial which will test whether tracked symptoms, integrated into the NHS, leads to better outcomes compared to usual care.

The trial will allocate patients at random to symptom tracking or not, and will run in 16 hospitals across Greater Manchester and North West London during 2024-25 with the results expected in 2026.

If successful, the team hope it will become a funded NHS service available for free to all patients with rheumatoid arthritis, and that it can be expanded to other long-term conditions.

Doctors and researchers agree that technology has big potential for improving healthcare, although strong evidence for its efficacy is often lacking.

This trial will test not only whether patients benefit from symptom tracking, but will also examine whether it is value for money, how to ensure certain patient groups are not ‘left behind’ because of the technology, how to get around the barriers for setting up this new technology in the NHS, and how the data generated can be re-used to support research as well as patients’ direct care.

The researchers will conduct interviews with patients, clinicians and other staff within the NHS to understand how to optimise symptom tracking in the future NHS

Areas they will consider include the views of older patients, those with dexterity problems, and those with lower digital access.

The study is also learning how best to allow patients to control who will have access to their data using an electronic consent system from home.

Prof Dixon added: “Smartphones and tablets provide a convenient way for patients to record their symptoms and health changes while living day-to-day with their long-term conditions.

“Real-time tracking from home allows patients and doctors to spot patterns that would otherwise have been missed or forgotten, like flares or gradual changes following treatment.”

Dr Sabine van der Veer, a senior lecturer in health informatics at the University of Manchester is the other co-lead for the study.

She said: “A major advantage of REMORA is that we have successfully sent patient’s data into the NHS.

“The data is available during a consultation, seen from within the electronic patient record that the clinician is already using to manage the patient’s care.

“Patient records have historically only included information entered by clinicians. We are changing this, by learning how patients can contribute information themselves and ultimately improve their long-term health.”

Karen Staniland, a patient with rheumatoid arthritis at Salford Royal, said: “It is very exciting to be involved in this research as one of the patient partners.

“I believe that REMORA could make a real difference to the patient consultation, as evidence provided directly from the patient will already be available to view in their medical record.

“It could also allow time for patients to plan future care with their health care professional and definitely help improve their quality of life.”

More information about the REMORA study, including a short video, can be found here: https://sites.manchester.ac.uk/remora/and    here:  www.tinyurl.com/remora2video