PO.ADV01 · 患者倡导
从生存者到合作伙伴：将患者声音贯穿于癌症研究全过程
From survivor to partner: integrating patient voice across the cancer research continuum
作者与单位 Authors & Affiliations
摘要 Abstract
中文摘要
从实验台到临床，癌症研究将科学创新转化为患者护理——然而，将患者声音贯穿于这一全过程需要研究文化的转变。对于那些选择超越生存者身份、投身倡导的人来说，患者合作伙伴这一角色将亲身经历转化为一种科学资产，放大了从发现到护理的影响力。
临床结局是癌症研究的基石——然而治疗所带来的代价远不止于此——包括身体、心理、经济以及照护者负担。患者合作伙伴将这些维度置于最前沿，确保研究反映癌症治疗的全部人类代价。他们的贡献贯穿研究全过程——从研究设计和经费申请，到临床试验招募和研究结果的传播——并进一步延伸至政策和立法倡导以及筹款领域。
要充分发挥这种合作关系的潜力，必须直面真实存在的障碍：沟通鸿沟、结构性排斥以及优先事项的差异。弥合这些障碍需要共同的承诺——研究人员以通俗易懂的语言进行沟通；患者合作伙伴加深对科学过程的理解。最终，这将产生反映现实需求、赢得公众信任并为其所服务对象带来有意义变革的研究。
对患者合作伙伴而言，这不仅仅是贡献。这是能动性。这是希望。
查看英文原文 English abstract
From bench to bedside, cancer research translates scientificinnovation into patient care - yet integrating the patient voice across thatcontinuum requires a shift in research culture. For those who choose to movebeyond survivorship into advocacy, the role of patient partner transformslived experience into a scientific asset, amplifying impact from discovery tocare.Clinical outcomes are the cornerstone of cancer research -yet treatment carries costs that extend far beyond - physical, psychological,economic, and caregiver burden. Patient partners bring these dimensions to theforefront, ensuring research reflects the full human cost of cancer treatment.Their contributions span the research process - from study design and grantapplications to clinical trial recruitment and dissemination of findings -while extending beyond into policy and legislative advocacy and fundraising.Realizing the full potential of this partnership demandsconfronting real barriers: communication gaps, structural exclusion, anddiffering priorities. Bridging these requires shared commitment - researcherscommunicating in lay terms; patient partners deepening their understanding ofthe scientific process. Ultimately, this produces research that reflectsreal-world needs, earns public trust, and drives meaningful change for those itis meant to serve.For patient partners, this is more than contribution. It isagency. It is hope.