Empowering Cancer Patients Through Innovations in Information Technology-Based Reporting of Precision Medicine

项目摘要 在医学中引入大规模基因组检测有望改变患者护理。癌症在 这场革命的前沿，数十万癌症患者接受肿瘤基因组检测 每年一次。尽管基因组检测在癌症中迅速采用，但许多患者无法理解基本的遗传学特征， 概念和定义他们疾病的基因组特征。鉴于知情的患者可以 更有效地参与他们的护理，更多的知识与改善癌症相关的 结果，有显着的关注，患者的基因组知识缺陷将有助于穷人 优质护理和成果。在这种情况下，迫切需要对患者进行癌症基因组学教育 一般来说，它们的测序结果，特别是，在一个格式，是可用的，有用的，很容易集成， 现有的临床工作流程。 我们建议通过确定患者对测序信息的需求来解决护理质量方面的这一差距， 利用这些知识来设计一个动态的、面向患者的、基于网络的癌症基因组测序报告， 将与电子健康记录整合（目标1）。在设计过程中，我们将征求以下方面的意见： 癌症患者，家庭成员和临床医生，以确保网络报告是有用的，可用的， 融入临床工作流程。在第二阶段，我们会评估 通过网络报告向接受学术治疗的癌症患者提供测序结果和基因组教育 和社区设置（目标2）。在这个项目完成后，我们将有能力测试 基于网络的患者测序报告在全面实施试验中的有效性。我们假设 当网络报告用于增加癌症基因组测序结果的回报时，1）它将 增加患者的知识、他们积极参与护理的能力以及他们分享基因组的能力 与家庭成员的信息; 2）它将增加肿瘤学家对基因组靶向治疗的建议 治疗; 3）它将改善患者与提供者的沟通，护理满意度和护理效率 交付.这个试点和可行性健康IT项目，解决机构的医疗保健研究和 质量的设计研究领域，将利用IT网络，我们已经开发的存储基因组- 测序数据;生成动态的、医生指导的报告;并将患者与相关临床 审判我们对开源开发的承诺将允许普遍访问源代码， 促进基于网络的患者测序报告和IT网络的广泛传播。通过提供 我们的目标是确保患者能够直接获得他们的测序结果， 他们疾病的基因组特征，并为他们提供积极参与所需的知识 癌症护理决策。如果成功，该项目将促进病人参与护理，并作为一个关键的 在提高癌症护理质量的目标上向前迈进一步。

PROJECT SUMMARY The introduction of large-scale genomic testing in medicine promises to transform patient care. Cancer is at the leading edge of this revolution and hundreds of thousands of cancer patients receive tumor genomic testing yearly. Despite rapid adoption of genomic testing in cancer, many patients fail to comprehend basic genetic concepts and the defining genomic characteristics of their disease. Given that better-informed patients can more effectively engage in their care, and that greater knowledge is associated with improved cancer-related outcomes, there are significant concerns that patients' genomic knowledge deficits will contribute to poor quality care and outcomes. In this context there is an urgent need to educate patients about cancer genomics generally, and their sequencing results specifically, in a format that is usable, useful, and that easily integrates into existing clinical workflows. We propose to address this gap in care quality by identifying patients' needs for sequencing information and using that knowledge to design a dynamic, patient-facing, web-based cancer genome sequencing report that will integrate with the electronic health record (Aim 1). During the design process, we will elicit input from cancer patients, family members and clinicians to ensure that the web report is useful, usable, and that it easily integrates into clinical workflows. In the second phase, we will evaluate the feasibility and acceptability of delivering sequencing results and genomic education via the web report to cancer patients treated in academic and community settings (Aim 2). On completion of this project, we will be well positioned to test the effectiveness of the web-based patient sequencing report in a full-scale implementation trial. We hypothesize that when the web report is used to augment the return of cancer genome sequencing results, 1) it will increase patients' knowledge, their ability to actively participate in care, and their ability to share genomic information with family members; 2) it will increase oncologists' recommendations for genomically targeted therapies; and 3) it will improve patient-provider communication, care satisfaction and the efficiency of care delivery. This pilot and feasibility health IT project, addressing the Agency for Healthcare Research and Quality's Design Research Area, will leverage the IT network that we have developed which stores genome- sequencing data; generates dynamic, physician-directed reports; and matches patients to relevant clinical trials. Our commitment to open source development will allow universal access to the source code and facilitate widespread dissemination of the web-based patient sequencing report and IT network. By providing patients with direct access to their sequencing results, we aim to ensure that they understand the essential genomic characteristics of their disease and give them the knowledge that they need to actively participate in cancer care decisions. If successful, the project will facilitate patient engagement in care and serve as a critical step forward in the goal to improve the quality of cancer care delivery.