PO.ADV02 · 患者倡导
于灰色地带中蓬勃成长：一种平衡科学与现实的患者需求模型
Thriving in the grey: A patient needs model to balance science and reality
作者与单位 Authors & Affiliations
摘要 Abstract
中文摘要
本海报提出了一个框架，用于鼓励神经内分泌肿瘤（NET）这一罕见癌症患者发出患者之声、并赋予患者自主权（Patient Agency）。该框架运用马斯洛需求层次理论，定义了一个患者需求矩阵（Patient's Matrix of Needs），勾勒出患者教育的优先事项，以及医疗与照护者的参与和赋权策略。通过向患者推广这一模型，我们力求加速患者对自身诊断的理解并建立蓬勃成长（thrivership）的心态，帮助患者制定个性化的行动计划以满足其个体需求。通过向研究界推广这一模型，我们有助于推动对患者照护的整体性认识，并支持患者与研究者参与的交汇，从而推动改善发现与治疗结果。
NET Research Foundation及其他组织拥有大量涉及患者蓬勃成长需求的材料和活动。这些材料若能围绕需求矩阵进行更好的组织，将有助于患者更快速地加以查阅利用。此外，研究界拥有与治疗相关的医学结局数据。本海报将包含将研究与蓬勃成长教育材料相衔接的示例，并突出未来发展的方向，以支持真正的NET患者自主权。
查看英文原文 English abstract
This poster presents a framework for encouraging the Patient Voice and empowering Patient Agency for neuroendocrine tumor (NET) cancer patients, an uncommon cancer. Utilizing Maslow's hierarchy of needs, it defines a Patient's Matrix of Needs outlining patient education priorities, as well as medical and caregiver engagement and empowerment strategies. In socializing this model with Patients, we seek to accelerate a Patient's understanding of their diagnosis and thrivership mindset, helping Patients develop a personalized action plan towards meeting their individual needs. In socializing this model with the Research community, we help drive a holistic view of patient care and support the intersection of Patient and Researcher engagement to drive improved discovery and treatment outcomes.
NET Research Foundation and other organizations have a wealth of materials and activities that speak to Patient thrivership needs. These materials will benefit from better organization around a Needs Matrix to help Patients more quickly navigate them. Additionally, Research has medical outcome data related to treatments. The poster will include examples of linking research and thrivership educational materials, as well as highlight areas for future development to support true NET Patient Agency.