Transforming outpatient consultations by integrating symptom tracking into clinical care
The REmote MOnitoring of Rheumatoid Arthritis (REMORA) study will develop, test and evaluate a system for tracking daily symptoms in people living with rheumatoid arthritis (RA), where data are collected using a smartphone app and integrated into NHS electronic patient records.
The £2.1m research study funded by the National Institute for Health Research (NIHR), aims to improve outpatient consultations by making sure both health staff and patients have detailed information on how patients have felt in the weeks and months between appointments.
Rheumatoid arthritis (RA) is a common long-term condition that causes painful, swollen joints, and may lead to disability. Currently, people with RA are asked about changes in their condition at appointments that can be up to several months apart. This means they may struggle to accurately remember the details of these changes.
We have developed a ‘symptom tracking system’. This comprises the REMORA smartphone app, in which patients track and record symptoms on a daily basis and log the impact of their RA between appointments. The data are then sent into a central location where they are summarised graphically and viewed from within the electronic medical record.
The first phase of the REMORA study (REMORA1) ran from 2015 to 2017, when 20 patients with RA tested the app over three months at Salford Royal Foundation Trust.
The second phase (REMORA2) started in October 2021. It aims to demonstrate improvements in clinical outcomes for people living with RA, as well as evaluating cost-effectiveness and learning how similar systems can be successfully rolled out in the NHS. The research will involve 12 rheumatology departments in Greater Manchester and North-West London.
Supporting patients and clinicians
The second phase of the study aims to support patients to access and use the system, irrespective of age, background, familiarity with technology or health. We will explore what it would take to use the system across the NHS and test the system’s effects on the care and health of people with RA.
Our goal is to make it easier for people to share symptom data for research and understand issues around this.
We will switch on our symptom-tracking system in 12 RA outpatient clinics, one at a time. Chance will determine which clinic goes first. Patients joining the study after the switch-on will use our system; those joining before will receive usual care. We will support patients from across the community to take part. We will use medical records and questionnaires to learn about the system’s effects, costs and benefits. We will interview patients and specialists to understand why it is or is not working and to improve the system.
Benefits of using remote monitoring
There are a number of benefits of using remote monitoring of a long-term condition.
With the REMORA2 project we will transform outpatient consultations by:
- Providing the bigger picture of RA by identifying real-time changes in disease activity and capturing symptoms that would otherwise have been missed.
- Enabling person-centred consultations, allowing doctors and patients to look together at trends of symptoms through time and make shared decisions.
- Empowering patients to organise and self-manage their own health.
- Allowing clinicians and researchers to better understand how symptoms change and how well and quickly patients respond to treatment.
If our system is proven to improve the severity of people’s RA and their quality of life, we aim to make the system available across the NHS. Together with existing NHS networks, we will develop materials to make this happen across the country and for other related diseases. This could improve the care and lives of thousands of people with RA and other long-term conditions.
Resources for patients
We’ve developed a number of resources to help you take part in the REMORA2 study.
This video has been created to help people with rheumatoid arthritis to self-examine their own tender and swollen joints. It has been designed and developed by patients and clinicians working on the REMORA study.
You can read more about how the video was made on the Centre for Epidemiology blog.
Chart and table for self-examinations
We have developed a joint count chart, or model, that shows which joints to check during self-examinations.
There is also a table so you can keep a record of the number of tender and swollen joints during your self-examination.
Video development team
The How to Self-Examine for Tender and Swollen Joints in Rheumatoid Arthritis video was developed by the following core members, on behalf of the REMORA team:
Meet the team
See who is involved with the REMORA2 project.
We have an interdisciplinary team of talented researchers, experts, and patient partners involved with the REMORA2 project.
Patient and Public Involvement and Engagement (PPIE) group
I was diagnosed with Rheumatoid Arthritis over 8 years ago and my involvement with the Patient Advisory group has enabled me to understand my condition more. I am more aware and up to date with the support and research available to RA patients. Being a fellow sufferer I have found that my contributions are based on having the disease and in turn this will help others to access information available and get the support and understanding of their own condition including ways to improve their well being.
My name is Dorothy Slater. I have suffered from Rheumatoid Arthritis for about 10 years now and I have been involved in the Patient and Public Involvement and Engagement (PPIE) for the Remote Monitoring of Rheumatoid Arthritis (REMORE) Study. I have found that patients involved in these research studies can add a very personal experiences which the researchers don’t have.
I do believe that being a patient partner in these type of groups helps to improve knowledge about how Rheumatoid Arthritis effects different people from different walks of life, making it possible to improve clinical care for all sufferers, of all ages.
My name is Golda Gibson. I was diagnosed with Rheumatoid Arthritis and Interstitial Lung disease 10 years ago. After the initial shock I joined the REMORA study which is looking into the benefits of remote monitoring by patients, helping them keep a record of how they are feeling on a daily basis.
I wanted to be a voice that spoke for patients, to highlight the daily difficulties R.A patients experience, and researchers and clinicians have minimal understanding of. Daily monitoring of our condition means that when we get that important face to face appointment, we’ll never again come away annoyed that we had forgotten something important.
I am a patient Ambassador in Scotland for the National Rheumatoid Arthritis Society (NRAS), and a Patient Research Partner in the PPIE Group of the REMORA2 project. Supporting research is one of the ways patients themselves can help others to live better with inflammatory rheumatic conditions and improve the care we receive.
My name is Karen Staniland. I am a patient with rheumatoid arthritis and a patient partner in the Patient and Public Involvement and Engagement (PPIE) group for the REmote MOnitoring of Rheumatoid Arthritis (REMORA) study. I believe that patient involvement in research studies adds a vital ‘lived experience’ dimension that researchers don’t have. I strongly believe that being a patient partner adds to our knowledge and helps turn a negative situation into a positive experience and, ultimately, has the potential to improve clinical care for us all.
I wanted to join the PPIE advisory Group, to learn more about different ranges of Rheumatoid arthritis and its impact on the REMORA study. I wish to contribute towards the purpose and barriers that participants may have around symptom tracking, to improve patient care. By engaging with diverse communities and patients, I believe the REMORA study can help to engage people in a unique way to enhance their quality of life.
My name is Paul Amlani-Hatcher and I live in London. I am a patient with rheumatoid arthritis and a patient partner in the Patient and Public Involvement and Engagement (PPIE) group for the REmote MOnitoring of Rheumatoid Arthritis (REMORA) study.
I believe that patients can add great value to research studies and that the interaction between patients and researchers can be extremely beneficial for all parties going forward.
Hi, I am Roopa Mohan, Counselling Psychologist and Mental Health Nursing Assistant by vocation. Being part of REMORA2 helps my clinician in understanding the disease pattern, identifying probable triggers and better management of RA condition I am living with, that would further help in planning my treatment. It also gives me a sense of control in self-management.
As a person experiencing chronic illness I was keen to share my experience and how I thought it may impact and be relevant for REMORA.
My motivation to be part of the patient advisory group was to learn more about the REMORA study and its set up and how my involvement might be useful to improve quality, relevance and effectiveness of the research project. I was also keen to learn how apps and social media can potentially help patients and doctors improve patient care.
Prof William Dixon
Will is the Co-Lead for the REMORA2 study together with Sabine. He is a consultant rheumatologist at Salford Royal Hospital and a Professor of Digital Epidemiology at the University of Manchester. REMORA2 brings together these two worlds, studying how daily tracked symptoms can be used to support both clinical care and population health research.
Dr Sabine Van Der Veer
Sabine is the Co-Lead for the REMORA2 study together with Will. She trained as a health informatician at the University of Amsterdam (the Netherlands) and is now a Senior Lecturer at the University of Manchester. She is interested in how we can use patient-generated health data, such as information on symptoms and quality of life, to improve the care and outcomes of people who live with long-term conditions. And REMORA2 is an excellent example of this.
Dr Deb Griffiths-Jones
Deb is the Programme Manager for the REMORA2 study. Her background is in clinical trials management, most recently having run a large, multi-centre drugs trial. Deb joined the REMORA2 team in January 2022 and she is responsible for managing the overall delivery of the project. She is involved in a number of different aspects of the programme from contracts, working with technical teams to allow REMORA to integrate with the NHS and collaborating with research sites in secondary care in the Greater Manchester and North West London regions.
Helen is the Project Manager for REMORA. Helen will be helping to prepare the ethics application for the main trial and site set-up in the Greater Manchester and North West London regions, i.e., coordinating with the local teams and R&D.
Prof John McBeth
John is an epidemiologist with lots of experience in setting up, running, and reporting the results of clinical trials in people living with musculoskeletal disease. In REMORA 2, John leads the feasibility trial. The feasibility trial will answer questions about the practicalities of running the main trial. We will examine how many people will come into the trial, how often people provide data using the REMORA app, and how many people will stay in the trial.
Prof Dawn Dowding
Dawn is Professor of Clinical Decision Making, in the School of Health Sciences and a nurse and health services researcher. She is leading the work package evaluating how REMORA impacts on clinical decision making, and the factors that help its implementation in practice.
Dr Matthew Parkes
Matt is a statistician with a background in clinical trials methodology in both early- and late-phase musculoskeletal and oncology trials, and experience in musculoskeletal epidemiology. He has research interests in using and promoting uptake of novel clinical trial designs to better address challenging clinical questions, improving transparency in clinical research, and using novel technology to improve the quality and efficiency of clinical trials. Matt is a Co-Investigator in REMORA2, with a focus on the methodological and statistical aspects of the project.
Dr Katie Druce
Katie is a Research Fellow working on the quantitative aspects of the REMORA2 study, including things like influencing and monitoring the recruitment process, checking data completion and interim analysis. Katie also mans the REMORA2 email help desk, and provides support and guidance to participants as needed.
Dr Charlotte Sharp
Charlotte is co-lead of WP 1.2, which aims to evaluate the feasibility study and to refine the supporting materials for REMORA2. She applies her knowledge of rheumatology clinical practice, and expertise in qualitative research and knowledge mobilisation, to the whole programme.
Dr Sarah Skyrme
Sarah is a social researcher with an interest in health, illness, disability, and the equitable provision of health care. For the REMORA study Sarah will be interviewing patients and clinicians who are involved in the project to learn about their experiences and thoughts on using the REMORA app and its data.
Prof Caroline Sanders
Caroline is Professor of Medical Sociology at University of Manchester and leads research focusing on patient and carer experiences, including experience of digital interventions and associated inequalities. Caroline is leading research focused on digital inclusion within REMORA2 and is the academic lead for public and patient involvement and engagement.
Prof Peter Bower
Peter is a Professor of Health Services Research at the NIHR School for Primary Care Research at the University of Manchester, where he works on mental health, multimorbidity, and service delivery. His main role on REMORA is advising on the design and delivery of the trial.
Dr Paul Wilson
Paul is a Senior Lecturer in Implementation Science, Centre for Primary Care and Health Services Research, University of Manchester. He is co-leading the process evaluation work package that is evaluating the factors that help or hinder the implementation of REMORA in practice.
Prof Nick Bansback
Associate Professor, University of British Columbia, Vancouver, Canada.
Nick is a health economist with an interest in providing value from the public investment in health care. He will be working on the health economic component of the REMORA2 study. In this he will determine the costs of implementing the REMORA application and the consequent impact on cost it might have such as changes in treatments. He will compare these costs to the benefits to patients and the health care system to determine how REMORA can be used as part of a sustainable health care system.
Dr Sean Gavan
Dr Sean Gavan is a research fellow in health economics at the Manchester Centre for Health Economics, The University of Manchester. Sean works alongside Dr Nick Bansback to design and deliver the health economic workstream for REMORA2. He has extensive experience of trial-based and model-based economic evaluations in rheumatoid arthritis and digital health technologies.
Dr Elaine Mackey
Elaine has worked in the field of data confidentiality, privacy and anonymisation for twenty years since undertaking a doctorate in statistical disclosure processes at the University of Manchester. She is currently the Information Governance Manager at the Centre for Epidemiology. She has published on anonymisation and data privacy and is part of the leadership team for the UK Anonymisation Network.
Rachel has worked in research management and governance for the last 10 years and has extensive experience in all aspects of research approvals, having worked in Research Ethics, Confidentiality Advice and Assessment within the Health Research Authority (HRA) and have held posts as project manager for clinical trials. Rachel works with the REMORA team to support compliance with information governance and more general research governance requirements, and assist with submissions to the HRA including amendments.
Dr Ramiro Bravo
Ramiro is the data manager for the REMORA2 programme. He joined the REMORA2 team in March 2021 and provides support to the team for the management of the research data. He is responsible for the design and development of the digital health data collection applications and instruments that we use. So far, he has been involved in the streamlining of the data collection process. During the programme he will monitor the engagement activity of our research participants and will be responsible for checking the quality of the data collected from our research centres.
If you have a question about the REMORA study that isn’t answered on this website, please get in touch.