Methods Training in Patient-Centered Cancer Outcomes Research

描述（由申请人提供）：我们中有三分之一的人会在一生中患上癌症。随着人口老龄化，这一发病率将会增加。医学知识的进步导致预防、诊断和治疗癌症的医疗保健选择呈指数增长。在相互竞争的备选方案中做出选择往往很困难，因为现有的证据可能在备选方案中有所不同，并且在做出医疗保健决定时可能无法反映对患者重要的价值观。越来越多的人认识到，患者的偏好有助于做出适当的护理决定。许多研究所依据的生物医学结果不容易被患者理解，而且临床医生或决策者往往也不太理解。比较有效性研究（CER）旨在通过提供不同替代方案的益处和危害的证据，为医疗保健决策提供信息。CER综合并产生有关干预措施有效性的可比证据，以便决策者（患者、临床医生和决策者）能够做出知情选择。以患者为中心的结局研究（PCOR）确保通过CER收集的证据与患者相关，并提供人们关心的结局信息：生存、症状、功能和生活质量。这对癌症患者尤其重要，因为治疗可能对某些结果有效（例如无病生存），但对其他结果有害（例如治疗毒性影响的生活质量）。随着CER/PCOR的发展，对这一领域的研究人员进行培训的需求日益增加。在这个项目中，我们与美国临床肿瘤学会（ASCO）合作，在癌症治疗的CER/PCOR领域提供培训和劳动力发展机会。此应用程序的目的是为对CER/PCOR感兴趣的癌症研究人员提供一个全面的培训计划。我们确定了四个主要的相互关联的培训方法核心：(i)知识综合和翻译；观察性研究和登记；（三）实用临床试验和保健服务评估；（四）以患者为中心的结果研究。我们的项目将提供不同级别的培训。基础学习模块将通过点播在线讲座和互动组件（在线问答和方法博客）实施。高级方法培训将与ASCO合作提供，包括网络研讨会和动手面对面的教育研讨会。最后，将为研究员提供上述核心领域之一的现场体验式学习。该组件还将包括个性化的指导计划。我们的培训计划将涵盖癌症护理的整个范围，包括预防、癌症治疗和医疗保健服务、支持性护理、幸存者和临终关怀。该计划在癌症研究领域是独一无二的，它将提供创新的点对点学习机会，并将加强最佳研究实践。这里提出的培训将增加国家的研究人员队伍，在整个癌症治疗范围内进行最先进的CER/PCOR。

DESCRIPTION (provided by applicant): One in three of us will develop cancer during our lifetime. This incidence will increase as the population ages. Advances in medical knowledge have lead to an exponential increase in healthcare options for the prevention, diagnosis and therapy of cancer. Choices among competing alternatives are often difficult because the available evidence may differ among options, and may not reflect values that are important to patients when making healthcare decisions. There is increasing recognition that patient preferences are instrumental in making appropriate decisions for care. Many studies are based on biomedical outcomes that are not easily understood by patients, and often, not well understood either by clinicians or policy-makers. Comparative effectiveness research (CER) aims to inform healthcare decisions by providing evidence on the benefits and harms of different alternatives. CER synthesizes and generates comparable evidence on the effectiveness of interventions so that decision-makers (patients, clinicians and policy-makers) can make informed choices. Patient-centered outcomes research (PCOR) ensures that the evidence gathered through CER is relevant to patients and provides information on outcomes that people care about: survival, symptoms, function and quality of life. This is especially important for patients with cancer since therapies can be effective for some outcomes (e.g. disease- free survival) but deleterious for others (e.g. quality of life affected by treatment toxicity). As CER/PCOR evolves there is increased need for training researchers in this area. For this proposal we have partnered with the American Society of Clinical Oncology (ASCO) to offer training and workforce development opportunities in the field of CER/PCOR in cancer care. The goal of this application is to provide a comprehensive training program for cancer researchers interested in CER/PCOR. We have identified four major interrelated methodology cores for training: (i) Knowledge synthesis and translation; (ii) Observational research and registries; (iii Pragmatic clinical trials and healthcare delivery evaluation; and (iv) Patient-centered outcomes research. Our program will provide different levels of training. Basic learning modules will be implemented through on-demand online lectures and interactive components (Q&A online sessions and methods blog). Advanced methods training will be offered in partnership with ASCO and will include Webinars and hands-on face-to-face educational workshops. Finally, on-site experiential learning for fellows will be provided with specialization in one of the core area identified above. This component will also include a personalized mentoring plan. Our training program will encompass the whole spectrum of cancer care including prevention, cancer treatment and healthcare delivery, supportive care, survivorship, and end-of-life care. The proposed program is unique in the field of cancer research, it will provide innovative peer-to-peer learning opportunities, and will enhance best research practices. The training proposed here will increase the nation's workforce of researchers conducting state-of-the-art CER/PCOR throughout the spectrum of cancer care.