Jobson Estelle, Garcia Marta, Sharek Danika, Risueño Laura, Arnould Sylvain, Lemoine-André Aude, Geissler Jan, Amariutei Ana, Grigolo Sabrina, Nafria Escalera Begonya, Smith Thomas, Sousa Oriana, Stone Linda, West Janet
EUPATI Fellow, Nyon, Switzerland.
Institut de Recherches Internationales Servier IRIS, Madrid, Spain.
Res Involv Engagem. 2024 Nov 6;10(1):116. doi: 10.1186/s40900-024-00631-w.
Patient involvement is crucial in healthcare, a factor increasingly recognised by life sciences companies and research institutes. This article presents a case study on Servier, a life sciences company that founded a patient expert board, ahead of launching a new research and development (R&D) institute. The aim was to foster a patient-centric culture within the company. The case study explores key developments in patient and public involvement, emphasising a shift from paternalistic to patient-centred approaches, noting few available case studies on patient board collaborations in life sciences. It outlines the evolution of the board, its impact, and practical lessons learned, with related recommendations. The patient board resulted from a three-way collaboration between the company, Patvocates (a patient consultancy), and patient experts recruited. The patient consultancy played a crucial role in project management, governance, and facilitating relationships. The case study provides the context, timeframe, foundations laid, engagement of patient experts, and foundational values, including: co-creation, fair market value remuneration, voluntary participation, and patient-centric meeting protocol. Eighteen patient experts, representing ten disease areas and ten European countries, joined the board and helped prioritise and co-create projects. Ideas for activities were sourced from brainstorming sessions and an in-company challenge. The collaboration yielded five core ideas, each forming a working group. The study describes the groups and their outputs: a patient advisory council, an interactive gallery of patient experience in R&D, patient engagement and entrepreneurship in life sciences, creating patient-focused decentralised trials (DCTs), and staff training on patient engagement. The article emphasises how the organic evolution of the collaboration led to significant insights. Hurdles faced by the company included: upstream planning, cross-company buy-in, compliance, and internal resource allocation. Recommendations for the wider community included: identifying and contracting patient partners; clarifying roles; managing expectations; building trust; logistics; and sustainability. This case study presents a practical, positive example of patient engagement within a life sciences company, offering insights into the establishing, running, and the impact of collaborating with a patient expert board. Lessons learned and recommendations may serve as a model for other companies seeking to engage with patients and evolve towards a more patient-centric approach in their strategies.
患者参与在医疗保健中至关重要，这一因素越来越受到生命科学公司和研究机构的认可。本文介绍了施维雅公司的一个案例研究，这是一家生命科学公司，在成立新的研发机构之前，成立了一个患者专家委员会。目的是在公司内部培育以患者为中心的文化。该案例研究探讨了患者和公众参与方面的关键发展，强调了从家长式方法向以患者为中心的方法的转变，并指出生命科学领域关于患者委员会合作的案例研究很少。它概述了该委员会的发展历程、其影响以及汲取的实际经验教训，并提出了相关建议。该患者委员会是公司、Patvocates（一家患者咨询公司）和招募的患者专家三方合作的成果。患者咨询公司在项目管理、治理以及促进关系方面发挥了关键作用。该案例研究提供了背景、时间框架、奠定的基础、患者专家的参与以及基本价值观，包括：共同创造、公平市场价值报酬、自愿参与以及以患者为中心的会议规程。18名患者专家，代表10个疾病领域和10个欧洲国家，加入了该委员会，并帮助确定项目的优先级并共同开展项目。活动创意来自头脑风暴会议和公司内部挑战赛。此次合作产生了五个核心想法，每个想法都形成了一个工作组。该研究描述了这些小组及其成果：一个患者咨询委员会、一个研发中患者体验的互动展示厅、生命科学领域的患者参与和创业、创建以患者为中心的去中心化试验（DCT）以及针对员工的患者参与培训。文章强调了合作的自然发展如何带来了重要见解。公司面临的障碍包括：前期规划、跨公司认同、合规以及内部资源分配。对更广泛群体的建议包括：确定并与患者合作伙伴签约；明确角色；管理期望；建立信任；后勤保障；以及可持续性。本案例研究展示了生命科学公司内患者参与的一个实际且积极的例子，为与患者专家委员会合作的建立、运作及影响提供了见解。汲取的经验教训和建议可为其他寻求与患者互动并在其战略中朝着更以患者为中心的方法发展的公司提供一个范例。
