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 improving the experience and engagement of clinical study participants, helps with dissemination of project results and presents the patient perspective to APPROACH researchers. Importantly, the learnings elaborated on in this article also refer to challenges experienced since the inception of the project in 2015, such as the effective integration of the PC within the work of project researchers, especially in the early days of APPROACH. 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.

APPROACH is a pertinent example of Lygature’s mission to bring together a wide variety of public and private partners, who share clinical datasets to realize medical solutions for patients. Lygature provides a broad range of support to APPROACH and the other projects it facilitates. In addition to coordination, project management (e.g. monitoring the effective execution of the work plan and its progress), IT infrastructures for collaboration and project communication/dissemination, this also includes support of patient involvement activities. As Lygature we strongly believe that involving people with lived experience of a medical condition in research projects increases the relevance, acceptance and impact of research. We therefore stimulate and actively support the set-up and management of patient involvement activities in research consortia. 

Irene Kanter-Schlifke, PC coordinator (Program Manager at Lygature) comments on the most recent APPROACH publication: “What we have learned in the APPROACH project 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! That’s why it’s been so important to share the experience from APPROACH through this journal publication. I am proud that as Lygature we could facilitate this process by co-writing and coordinating the production of this APPROACH article.”

Janneke Boere, Program Manager on APPROACH (Lygature) shares her experience with involving a patient representatives in the project: “In large complex clinical studies, in which multiple partner organizations are involved, we tend to forget that our joint effort is not just scientific research or getting a new drug on the market, but it is finding actual medical solutions ‘for patients with patients’. The work of the PC constantly reminds us of this goal.”

About APPROACH 

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. 

Publication

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.

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. 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. 

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. 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.

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.”

Principal Investigator of the APPROACH study - Harrie Weinans (University Medical Centre Utrecht, The Netherlands) comments: “With new members of the lab, I now discuss not only the science of Osteoarthritis but also how it affects the patient.”