Grine Lynda, Janssens Rosanne, van Overbeeke Eline, Derijcke Danielle, Silva Mitchell, Delys Belinda, Dusart Isabelle, Aertsen Veerle, Mertens de Wilmars Magali, Robaczewska Joanna, Stevens Hilde
Department of Head & Skin, Ghent University, Ghent, Belgium.
EUPATI BE VZW, Brussels, Belgium.
Front Med (Lausanne). 2020 Feb 13;7:36. doi: 10.3389/fmed.2020.00036. eCollection 2020.
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.
比利时患者参与医疗创新和药物研发促进组织（EUPATI.be）是一个由当地合作伙伴组成的非正式团体，他们致力于提高患者在医疗创新以及药物研发中的参与度。EUPATI.be汇聚了来自医疗保健相关不同领域的各类利益相关者，包括患者、学术界和产业界。通过这样做，我们创建了一种创新的协作方式，让来自不同背景的参与者共同努力，提高患者在医学研究中的参与度，并将患者置于比利时医疗体系的核心位置。此前，我们对一小部分利益相关者就患者参与情况进行了深入访谈。在此，我们通过一项全国性调查来详细阐述我们之前的研究结果，以探究比利时利益相关者对患者参与的看法。为此，我们开展了一项电子调查，提供法语、荷兰语和英语版本，为期11个月可供填写。共提出了12个问题，包括11个多项选择题和1个开放式问题。后者采用框架法进行主题分析。共记录了117份回复，并进行了描述性统计。大多数受访者可分为患者、学术界和产业界，而政策制定者、支付方和医疗保健专业人员的代表性不足。我们识别出了阻碍患者参与的若干障碍，某些利益相关者群体有时更多地提及这些障碍。接下来，我们发现各类利益相关者仍将患者参与视为一种被动角色，即在临床试验中的医学受试者。受访者还表示，各类利益相关者的角色需要进一步明确；不同利益相关者之间的信任程度也证实了这一点。几乎所有受访者都报告了与各类利益相关者开展现有合作以及希望加强合作的情况。基于这项调查，我们可以确定在比利时的环境下让患者参与医学研发的潜力。我们的结果将有助于理解和应对当前阻碍患者参与的各种障碍，同时凸显从多利益相关者角度建立协作环境的必要性。
