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

Abstract

Plain English summary This article describes the activities and lessons learned from the involvement of a Patient Council in APPROACH, a 5-year European clinical research project focusing on osteoarthritis, the most common form of joint disease. The Patient Council is a group of five people from different EU countries who live with osteoarthritis. They use their knowledge of life with the disease 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 Patient Council 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. The authors (current members of the Patient Council and other selected project members) describe in this article what was needed to successfully work together, the process of becoming fully engaged and involved and describe the impact that their activities have 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.

Keywords

• Osteoarthritis
• Patient involvement
• Patient engagement
• Research consortium
• Biomarker
• Clinical trial