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New APPROACH publication describes the experiences and lessons learned from involving people living with osteoarthritis in a research consortium
The article explains how the APPROACH Patient Council (PC), set up in the early phase of the project, contributes to improve the experience and engagement of APPROACH study participants, helps with dissemination of project results and presents the patient perspective to APPROACH researchers. Tangible contributions of the APPROACH PC include input on the clinical protocol used in the project and supporting effective communication with study participants through direct interaction with them and by creating informative participant newsletters. Moreover, in the article the authors describe intangible benefits such as the shift in researchers’ attitude towards the importance of involving study participants in the study design and study execution, and the sense of community and purpose gained by the PC members. Importantly, the learnings elaborated on in this article also refer to challenges experienced in the past five years such as the effective integration of the PC within the work of project researchers, especially in the early days of the project. By sharing these learnings, the authors hope to help other research projects to integrate the patient perspectives effectively, and to encourage people living with a medical condition to share their experience with researchers through patient involvement activities.
Title
Making the patient voice heard in a research consortium: experiences from an EU project (IMI-APPROACH).
Authors
Jane Taylor, Sjouke Dekker, Diny Jurg, Jon Skandsen, Maureen Grossman, Anne-Karien Marijnissen, Christoph Ladel, Ali Mobasheri, Jon Larkin, Harrie Weinans, Irene Kanter-Schlifke on behalf of the APPROACH research consortium.
Available here.
Background
APPROACH is a 5-year European clinical research project focusing on osteoarthritis, the most common form of joint disease. This EU-wide research consortium aims at identifying different subgroups of knee osteoarthritis in order to enable future differential diagnosis and treatment. During a 2-year clinical study images, biomarkers and clinical data are collected from people living with knee osteoarthritis. Moreover, data are analyzed to confirm patterns which can indicate such different subgroups. A Patient Council (PC) representing the perspectives of people living with osteoarthritis has been set up at the start of the project. The PC is a group of five people from Norway, the Netherlands and the UK who live with osteoarthritis.
Summary
This article describes the activities and lessons learned from the involvement of a Patient Council (PC) in APPROACH. The PC members use their knowledge of living with osteoarthritis and their own past experience as participants in clinical studies to help improve the experience of people who participate in the APPROACH clinical study. In addition, they provide the overall patient perspective to the researchers within the project.
When the project started, the PC was a group of individuals who didn’t know each other. They had to find a way to work together with each other as a team, and with the researchers to ensure their involvement was integrated effectively into the project. Today, the PC is a strong team that is fully integrated within the consortium and acknowledged by the APPROACH researchers as an important sounding board.
In this article, the authors (current members of the PC and other selected project members) explain what was needed to successfully work together, the process of becoming fully engaged and involved. Importantly, they describe the impact that their activities has made on the clinical study during the project and beyond. They share their lessons learned with the goal to help other research projects to integrate the patient perspective effectively, and to encourage people living with a medical condition to share their experience with researchers through patient involvement activities.
Maureen Grossman, member of the APPROACH patient council, comments on the contributions of the PC in the project: “We gave members of the project the opportunity to meet people who actually lived with OA and enabled them to understand more of the impact of OA on our lives. Maybe we gave them an added incentive to get on with it.”
Jonathan Larkin (GlaxoSmithKline, USA), APPROACH coordinator shares his experience with involving patients in the project: “The humanity, compassion and unique perspective the APPROACH patient council brought to the project was crystal clear from the kick-off onwards. Their contributions had both a disruptive and stabilizing effect. Through challenging scientists and clinicians to think differently about the research being conducted, they provided a patient-focused vision for others to follow.”
Irene Kanter-Schlifke, PC coordinator (Lygature, The Netherlands): “What we have learned is that setting up a functional PC does not happen overnight. It costs time and effort, and it needs proper preparation and coordination. But it is all worth it!”