Improving Patient Involvement in the Lifecycle of Medicines: Insights From the EUPATI BE Survey

Frontiers in Medicine

article

Lynda Grine¹  Joanna Robaczewska²  Hilde Stevens³  Rosanne Janssens²  Eline van Overbeeke²  Danielle Derijcke²  Mitchell Silva²  Belinda Delys²  Isabelle Dusart²  Veerle Aertsen²  Magali Mertens de Wilmars² 

[1] Department of Head & Skin, Ghent University;EUPATI BE VZW;Institute for Interdisciplinary Innovation in healthcare (I3h), Université Libre de Bruxelles;Department of Pharmaceutical and Pharmacological Sciences, University of Leuven;The Synergist.org;Oncology;Vaccines;Innovative Medicines Initiative;Patient Expert

关键词: patient involvement;    patient engagement;    survey;    multi-stakeholder;    medical innovation;   

DOI  :  10.3389/fmed.2020.00036

学科分类：社会科学、人文和艺术（综合）

来源: Frontiers

【 摘 要 】

EUPATI Belgium (EUPATI.be) is an informal gathering of local partners who are interested in improving patient involvement in healthcare innovation and medicines research and development. EUPATI.be brings together various stakeholders from different areas related to healthcare including patients, academia and industry. In doing so, we create an innovative collaborative approach where actors from different backgrounds work toward improving patient involvement in medical research, and putting the patient at the center of the Belgian healthcare system. Previously, we performed in-depth interviews with a small group of stakeholders on patient involvement. Here, we elaborate on our previous findings by using a nation-wide survey to inquire into Belgian stakeholders' perception on patient involvement. To this end, an electronic survey was available in French, Dutch and English, and accessible for 11 months. Twelve questions were asked, including 11 multiple choice questions and 1 open question. The latter was thematically analyzed according to the framework method. A total of 117 responses were registered and descriptive statistics were performed. The majority of respondents could be categorized into patient, academia and industry, whereas policy makers, payers, and healthcare professionals were underrepresented. We identified several barriers that hamper patient involvement, which were sometimes more reported by specific stakeholder groups. Next, we found that various stakeholders still consider patient involvement as a passive role, i.e., medical subject in a clinical trial. Respondents also reported that the role of the various stakeholders needed more clarification; this was also confirmed by the level of trust amongst the various stakeholders. Existing and the wish for more collaboration with the various stakeholders was reported by almost all respondents. Based on this survey, we can define the potential of involving patients in the medical research and development in the Belgian landscape. Our results will help to understand and tackle the various barriers that currently hamper patient involvement, whilst highlighting the need for a collaborative landscape from the multi-stakeholder perspective.

【 授权许可】

CC BY