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

Jane Taylor, Sjouke Dekker, Diny Jurg, Jon Skandsen, Maureen Grossman, Anne Karien Marijnissen, Christoph Ladel, Ali Mobasheri, Jon Larkin, Harrie Weinans, Irene Kanter-Schlifke*,

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

Abstract: APPROACH is an EU-wide research consortium with the goal to identify different subgroups of knee osteoarthritis 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 and data are analyzed to confirm patterns that can indicate such different subgroups. A Patient Council (PC) has been set up at project initiation and consists of five people from Norway, The Netherlands and UK. Initially, this group of individuals had to learn how to effectively work with each other and with the researchers. Today, the PC is a strong team that is fully integrated in the consortium and acknowledged by researchers as an important sounding board. The article describes this journey looking at formal processes of involvement – organizational structure, budget, meetings – and more informal processes such as building relationships and changing researcher perceptions. It describes how the PC helped improve the experience and engagement of study participants by providing input to the clinical protocol and ensuring effective communication (e.g. through direct interactions with participants and newsletters). Furthermore, the PC is helping with dissemination of results and project advocacy, and overall provides the patient perspective to researchers. Additionally, the authors experienced and describe the intangible benefits such as a shift in researcher attitudes and a sense of community and purpose for PC members. Importantly, learnings reported in this article also include the challenges, such as effective integration of the PC with researchers’ work in the early phase of the project. Trial registration: US National Library of Medicine, NCT03883568, retrospectively registered 21 March 2019.

Original languageEnglish
Article number24
JournalResearch involvement and engagement
Volume7
Issue number1
DOIs
Publication statusPublished - 10 May 2021

Keywords

  • Biomarker
  • Clinical trial
  • Europe
  • Osteoarthritis
  • Patient engagement
  • Patient involvement
  • Public-private partnership
  • Research consortium

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