New publication from the European consortium APPROACH describes the experiences and lessons learned from involving osteoarthritis patient representatives in research projects

The Innovative Medicines Initiative (IMI)-funded project APPROACH (Applied Public-Private Research enabling OsteoArthritis Clinical Headway) recently published an article describing the activities and lessons learned from the involvement of people living with osteoarthritis. The authors of the article are members of the project’s Patient Council (PC), who also live with osteoarthritis and provide continuous advice to the project researchers. While it is widely acknowledged that involving people with lived experience is essential to increase the impact of research and research budgets, implementing effective patient involvement in practice remains a challenge. Sharing the experience from APPROACH is important to help other research projects integrate the patient perspective effectively, and to encourage people living with a medical condition to share their experience with researchers.

The article explains how the 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. The authors describe the process of becoming fully engaged and involved and the steps needed to successfully work together as a council. They describe the tangible impact of PC activities on the clinical study and beyond, and the intangible benefits such as a shift in researchers’ attitude towards the importance of involving study participants in the study design and execution and a sense of community and purpose for PC members. Importantly, they openly discuss their lessons learned over the past five years and provide recommendations based on that.

 Maureen Grossman, member of the PC, comments on the contributions of the PC in APPROACH: “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!”

The publication

Making the patient voice heard in a research consortium: experiences from an EU project (IMI-APPROACH).