Making the patient voice heard in a research consortium: experiences from an EU project (IMI-APPROACH)
Taylor, Jane; Dekker, Sjouke; Jurg, Diny; Skandsen, Jon; Grossman, Maureen; Marijnissen, Anne Karien; Ladel, Christoph; Mobasheri, Ali; Larkin, Jon; Weinans, Harrie; Kanter-Schlifke, Irene; on behalf of the APPROACH research consortium and APPROACH Principal Investigators
(2021) Research involvement and engagement, volume 7, issue 1
(Article)
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
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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.
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Keywords: Biomarker, Clinical trial, Europe, Osteoarthritis, Patient engagement, Patient involvement, Public-private partnership, Research consortium, Health(social science), General Health Professions, Letter
ISSN: 2056-7529
Publisher: BioMed Central Ltd.
Note: Funding Information: The Applied Public-Private Research enabling Osteo Arthritis Clinical Headway (APPROACH) is an international and cross-discipline collaboration project bringing together clinicians and researchers from different disciplines (rheumatology, orthopedics, imaging departments and laboratories), from clinical centers, basic research institutes and pharmaceutical and non-pharmaceutical companies, as well as people diagnosed with osteoarthritis (OA). The project has been running from June 2015 to December 2021 and is funded by the Innovative Medicines Initiative (IMI), a partnership between the European Commission (EC) and the European Federation of Pharmaceutical Industries and Associations (EFPIA) that funds health research and innovation []. Funding Information: The APPROACH project has received support from the Innovative Medicines Initiative Joint Undertaking under Grant Agreement n° 115770, resources of which are composed of financial contribution from the European Union’s Seventh Framework Programme (FP7/2007–2013) and EFPIA companies’ in kind contribution. See www.imi.europa.eu and www.approachproject.eu . This communication reflects the views of the authors and neither IMI nor the European Union and EFPIA are liable for any use that may be made of the information contained herein. Funding Information: The authors would like to thank all partners of the APPROACH consortium for their continued collaboration and support of the PC. Versus Arthritis (UK) and ReumaNederland (The Netherlands) have made a particular contribution at the project proposal stage and invited founding PC members. Ingrid Lether participated in the MRI test and re-test study (Dry run of clinical protocol by APPROACH researchers section), together with two co-authors of this paper. Merck KGaA kindly allowed the authors to utilize drawings from its 350th anniversary research day (Fig. 3); the artist was Andreas Gaertner from die-zeichner.de. The authors would also like to acknowledge two former PC members from Germany and Spain, respectively; when still active members of the PC, their contribution and experience was highly valued. The authors would like to thank specifically the IMI reviewers and expert panels who encouraged the involvement of patients from the inception of this project. Publisher Copyright: © 2021, The Author(s).
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