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通过与患者合作,将以患者为中心的理念嵌入其中,从而改变罕见病生态系统。

Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem.

机构信息

Global Patient Insights and Solutions, Alexion, AstraZeneca Rare Disease, 1385 Craigleith Road, Oakville, Vaughan, Canada.

Founder/Executive Director, The Sumaira Foundation, Boston, MA, USA.

出版信息

Pharmaceut Med. 2023 Jul;37(4):265-273. doi: 10.1007/s40290-023-00474-y. Epub 2023 May 4.

Abstract

What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge in patient-centricity publications, and in many cases for the biopharmaceutical industry, patient engagement is used to endorse pre-held assumptions at a specific moment in time. Rarely is patient engagement used to drive business decisions. Here we describe an innovative partnership between Alexion, AstraZeneca Rare Disease and patients that allowed a deeper understanding of the biopharmaceutical stakeholder ecosystem and an empathic understanding of each patient's and caregiver's lived experience. Alexion's decision to build patient-centricity frameworks resulted in the formation of two unique organisation design platforms: STAR (Solutions To Accelerate Results for patients) and LEAP (Learn, Evolve, Activate and deliver for Patients) Immersive Simulations. These interconnected programmes required cultural, global, and organisational shifts. STAR generates global patient insights that are embedded in drug candidate and product strategies while helping to establish enterprise foundational alignment and external stakeholder engagement plans. LEAP Immersive Simulations produce detailed country-level patient and stakeholder insights that contribute to an empathetic understanding of each patient's lived experience, support country medicine launches and provide ideas to have a positive impact along the patient journey. Combined, they deliver integrated, cross-functional insights, patient-centric decision making, an aligned patient journey, and 360° stakeholder activation. Throughout these processes, the patient is empowered to dictate their needs and validate the proposed solutions. This is not a patient engagement survey. This is a partnership where the patient co-authors strategies and solutions.

摘要

患者为中心是什么?在某些情况下,它与基于生物标志物的靶向治疗或提供医疗保健机会相关联。关于以患者为中心的文献大量涌现,在许多情况下,对于生物制药行业而言,患者参与被用来在特定时刻支持预先持有的假设。很少有患者参与被用来推动业务决策。在这里,我们描述了 Alexion、阿斯利康罕见病与患者之间的创新合作伙伴关系,该关系使我们能够更深入地了解生物制药利益相关者生态系统,并对每位患者及其护理人员的生活体验产生共鸣。Alexion 决定构建以患者为中心的框架,由此形成了两个独特的组织设计平台:STAR(为患者加速结果的解决方案)和 LEAP(为患者学习、进化、激活和交付)沉浸式模拟。这些相互关联的计划需要进行文化、全球和组织变革。STAR 生成全球患者见解,这些见解嵌入在候选药物和产品策略中,同时有助于建立企业基础的一致性和外部利益相关者参与计划。LEAP 沉浸式模拟产生详细的国家层面的患者和利益相关者见解,有助于对每位患者的生活体验产生共鸣,支持国家药物推出,并为患者旅程提供积极影响的想法。两者结合起来提供了综合的、跨职能的见解、以患者为中心的决策、一致的患者旅程和 360°的利益相关者激活。在整个过程中,患者被赋予权力来表达他们的需求并验证所提出的解决方案。这不是患者参与调查。这是一个合作伙伴关系,患者共同撰写策略和解决方案。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/e32f/10314834/57228759485d/40290_2023_474_Fig1_HTML.jpg

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