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Peter Mellor and Pat Walkington
The REmote MOnitoring of Rheumatoid Arthritis (REMORA) project was a collaborative project between CLAHRC Greater Manchester, the Health e-Research Centre, Salford Royal NHS Foundation Trust (SRFT), and research staff at the University of Manchester. The project ran from 2015-2017 and provided patients with rheumatoid arthritis (RA) the opportunity to use the newly developed REMORA app to record their health data and disease activity over a period of several months, which then linked directly to their Electronic Patient Record (EPR) for use in real-life clinical consultations at SRFT. The project provided a unique opportunity to monitor RA activity in-between clinical consultations and use this information to make beneficial clinical decisions for patient’s care. The project was received positively by participants and was recognised with the ‘Enabling Patients with Technology’ award in Abbvie's 2017 Patients as Partners awards.
A major factor in the success of the project was the establishment of the REMORA advisory group, a group of 7, all of whom were diagnosed with RA, who were brought into the project to provide a patient and public insight to best meet the needs of RA patients through the REMORA app. I spoke with Pat Walkington, a CLAHRC patient and public engagement panel member and REMORA advisory group member, about her role in the group, how the group worked, and the benefits that it brought to the project as a whole.
Q: Pat, can you tell us how you became involved in CLAHRC and the REMORA project?
A: “’I’ve been involved with CLAHRC GM since February 2015 as a patient and public engagement panel member which was a position that I applied for. I was interviewed and appointed along with 5 other members. In the initial stages we helped to shape the CLAHRC plans for using PPI in the future as projects emerged and eventually we became involved in various CLAHRC projects.” “I was allocated to be the main PPI contact for the REMORA project due to my interest in health technology and the desire to help bring researchers and the public together through this type of work. I met with Lynn Austin (lead qualitative researcher for REMORA) at the start of the project and remained engaged with REMORA right to the end of the project. Lynn and I worked together to shape the way the PPI/advisory group would work and did our best to ensure that we involved the most appropriate people for the project."
Q: How was the advisory group set up and how did things go at the start?
A: “I became involved at the very beginning of the project. Lynn contacted all the potential advisory panel members, and then we spent some time planning the first group meeting as we felt that this would set the tone for the future success of the group. We developed an information leaflet for the group setting out the purpose of the group and its function, and it included our contact details as well as the contact details for other sources of support should any advisory group members have any concerns. We decided to keep in regular communication with group members, hold regular meetings every month or two, with Lynn and I attending all meetings whenever possible. We ensured that each meeting had a comfortable atmosphere but kept a clear focus to help guide and contribute to the project. It was important that we all understood that we were not a RA support group and that there was clearly planned discussion time for each meeting focusing on different aspects of the project”. “In the early stages, different members of the research team attended group meetings. Their input helped us to learn more about and understand the wider aspects and implications of the project. Caroline Sanders’ attendance helped act as an external reporting mechanism for the group, ensuring our discussions were taken up by the research team.”
Q: Once the group had started up how did you contribute to the REMORA project
A: “As far as I know, the advisory group was established before much research activity had taken place and we were given the remit to help develop the REMORA app directly by discussing: ‘as RA patients, what would we want to have in an app on our own phones?’ This would help to ensure the app would meet the needs of patient participants living with RA.” “Working closely with Will Dixon (Project Lead) and Caroline Sanders, who were good listeners, the group was able to communicate their ideas directly to the researchers involved in leading the project, and it was great to know from their feedback and changes that were made that our advice was being taken up. The group also acted as first-testers of demo versions of the app, allowing us to experience using the REMORA app and provide feedback that would improve the experience for the patient participants.” “Due to the varying nature of RA as a condition, it was important that the app could capture as much as possible of each individual’s perceptions of their own RA, which led to the inclusion of a number of specific questionnaire sections and free text questions within the app. This was a direct result of the advisory group’s discussions and feedback to the research team.”
“I took notes at every meeting which ensured that a record was kept of our discussions that also acted as an aide memoire for the next meeting. These were distributed to all group members.”
Q: How were you kept involved in the research side of the project?
A: “Lynn and I met before meetings so that I could be briefed on any updates, Lynn sent out regular email informative communications between meetings and start each meeting with a progress update from the research team. Lynn and other research team members would attend the meetings and give presentations around progress, further developments, and other aspects of the project, which the group could then discuss directly with the research team. We all learned a lot from the presentations which included areas of work and research new to us.”
Q: For you personally, and as a group, were there any things you learnt as a result of being a part of the REMORA advisory group?
A: “There were a lot of positives: I learned a lot about RA which enabled me to participate more fully in the project. Group members were very supportive of each other and this gave some of them the confidence to try new things, such as taking part in new activities or joining new social groups. The positive group dynamic enabled us to have open and honest discussions: we didn’t always agree with each other but the discussions were always constructive and helpful to other members as well as to REMORA.” “When discussing RA as a group some members described RA as an ‘invisible disease’ and outlined the challenges associated with this. They also realised that there were different ideas on how to assess flare ups, joint pain and swelling, which led to the group receiving direct training on joint assessment from a qualified professional. This training was successful with the group and as a result it was offered to all of our patient participants as well. This was another direct impact the advisory group made.”
Q: What do you think were the key positives for you and for the group as a whole?
A: “The group members and research team all felt that the project was successful due to the setting up of a supportive, open discussion group right from the start and keeping regular communication and meetings going throughout the whole project. Being able to contribute on many different aspects including documentation, app development, relevant RA questions within the app, testing, re-testing, and giving regular feedback meant that the group had a significant impact in a number of areas of the project and improved the experience for the patient participants and clinical staff.” “The engagement with the group and positive feedback from Will Dixon and the other research team members was also essential in helping each group member feel valued for their contribution and the impact that they had made. The only real negative came when the project came to an end, as the members felt so positively about taking part in the meetings.” “For me personally, it was a great opportunity to see and be involved in a research project every step of the way. Working with Lynn to establish and shape the group and the project gave continuity that you don’t always get with PPI work.”
Date Published: 28/03/2019