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

Research Involvement and Engagement

Christoph Ladel¹  Jon Larkin²  Irene Kanter-Schlifke³  Anne-Karien Marijnissen⁴  Harrie Weinans⁴  Sjouke Dekker⁵  Diny Jurg⁵  Jane Taylor⁵  Jon Skandsen⁵  Maureen Grossman⁵  Ali Mobasheri⁶ 

[1] BioBone B.V, Amsterdam, The Netherlands;GlaxoSmithKline, Collegeville, PA, USA;Lygature, Jaarbeursplein 6, 3521 AL, Utrecht, The Netherlands;Rheumatology & Clinical Immunology, University Medical Center Utrecht, Heidelberglaan 100, 3584 CX, Utrecht, The Netherlands;The APPROACH Patient Council, Utrecht, The Netherlands;University of Oulu, Oulu Finland State Research Institute Centre for Innovative Medicine, Vilnius, Lithuania;University Medical Center Utrecht, Utrecht, The Netherlands;

关键词: Osteoarthritis;    Patient involvement;    Patient engagement;    Research consortium;    Biomarker;    Clinical trial;    Public-private partnership;    Europe;   

DOI  :  10.1186/s40900-021-00267-0

来源: Springer

【 摘 要 】

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 registrationUS National Library of Medicine, NCT03883568, retrospectively registered 21 March 2019.

【 授权许可】

CC BY