Sessa Cristiana, Schmid Caecilia, Tolotti Angela, Magnin Annette, Haerry David, Bonetti Loris, Klingmann Ingrid
Department of Medical Oncology, Oncology Institute of Southern Switzerland (IOSI), Bellinzona, Switzerland.
Swiss Clinical Trial Organisation (SCTO), Bern, Switzerland.
Front Med (Lausanne). 2021 Dec 23;8:795659. doi: 10.3389/fmed.2021.795659. eCollection 2021.
The European Patients' Academy on Therapeutic Innovation Switzerland (EUPATI CH) was established as an association in 2016 with the mission to improve patient empowerment in Switzerland, raise public awareness of EUPATI's education material, and foster multi-stakeholder partnerships in order to promote public involvement in all aspects of medicines research and development (R&D). In order to achieve its goal of improving patient involvement (PI) in all processes of medicines R&D in Switzerland and to obtain guidance and recommendations for future activities, EUPATI CH initiated a multi-stakeholder survey on PI experiences, hurdles, and best practices. The survey enabled EUPATI CH to obtain and analyze the views of various stakeholders and shape its workplan. Data collection occurred between January and July 2019 using a survey and semi-structured interviews with individual stakeholders from different groups. The online survey responses were analyzed using quantitative methods and the interviews were analyzed using qualitative methods. The online survey was completed by 55 respondents (10%), and the semi-structured interviews were conducted with 14 stakeholders. Respondents to the online survey were patient representatives (45%), researchers from academia (25%), individuals from the pharmaceutical industry (9%), healthcare professionals (23%), and representatives from government agencies (6%). Some respondents were also members of EUPATI CH. Thirty-eight percent of respondents consider PI in Switzerland to be limited or absent. They identified the main barriers to PI as, first and foremost, a lack of funds and human resources (65%), followed by a lack of information and a lack of education on how to become a patient advocate (21%), a lack of collaboration with other stakeholders (16%), and a lack of adequate resources. Respondents' expectations of EUPATI CH's role in supporting PI were to provide education for active PI and improve networking and collaboration among stakeholders. EUPATI CH's multi-stakeholder research identified some of the difficulties in promoting PI in medicines R&D in Switzerland, in particular the complex collaboration among stakeholders and a lack of funds, human resources, and knowledge. To respond to these difficulties, EUPATI CH has begun preparing a basic training course for patients that is adapted to Switzerland.
欧洲治疗创新患者学会瑞士分会（EUPATI CH）于2016年作为一个协会成立，其使命是增强瑞士患者的权能，提高公众对EUPATI教育材料的认识，并促进多利益相关方伙伴关系，以推动公众参与药品研发（R&D）的各个方面。为了实现提高患者参与瑞士药品研发所有流程的目标，并为未来活动获取指导和建议，EUPATI CH发起了一项关于患者参与经验、障碍和最佳实践的多利益相关方调查。该调查使EUPATI CH能够获取并分析各利益相关方的观点，并制定其工作计划。2019年1月至7月期间，通过对来自不同群体的个体利益相关方进行调查和半结构化访谈来收集数据。在线调查回复采用定量方法进行分析，访谈采用定性方法进行分析。55名受访者（10%）完成了在线调查，对14名利益相关方进行了半结构化访谈。在线调查的受访者包括患者代表（45%）、学术界研究人员（25%）、制药行业人员（9%）、医疗保健专业人员（23%）以及政府机构代表（6%）。一些受访者也是EUPATI CH的成员。38%的受访者认为瑞士的患者参与有限或不存在。他们确定患者参与的主要障碍首先是缺乏资金和人力资源（65%），其次是缺乏信息以及关于如何成为患者倡导者的教育（21%）、缺乏与其他利益相关方的合作（16%）以及缺乏足够的资源。受访者对EUPATI CH在支持患者参与方面作用的期望是为积极的患者参与提供教育，并改善利益相关方之间的网络和合作。EUPATI CH的多利益相关方研究确定了在瑞士促进药品研发中患者参与的一些困难，特别是利益相关方之间复杂的合作以及缺乏资金、人力资源和知识。为应对这些困难，EUPATI CH已开始为瑞士患者准备一门基础培训课程。
