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

通过基于信息技术的精准医学报告创新为癌症患者提供帮助

• 批准号: 9224605
• 负责人: Stacy W. Gray
• 金额: $ 15万
• 依托单位: BECKMAN RESEARCH INSTITUTE/CITY OF HOPE
• 依托单位国家: 美国
• 财政年份: 2016
• 资助国家: 美国
• 起止时间: 2016-09-30 至 2018-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9224605
• 关键词: Empowering; Cancer; Patients; Through; Innovations

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.

项目摘要 大规模基因组测试在医学中的引入有望改变患者护理。癌症正在 这场革命的前沿，成千上万的癌症患者接受了肿瘤基因组检测 每年。尽管在癌症中快速采用了基因组测试，但许多患者未能理解基本遗传 概念和其疾病的定义基因组特征。鉴于知名度更高的患者可以 更有效地从事他们的护理，并且更多的知识与改善癌症相关的知识有关 结果，有很大的担忧是患者的基因组知识缺陷会导致贫困 优质的护理和结果。在这种情况下，迫切需要对患者了解癌症基因组学 通常，他们的测序结果特别是以可用，有用的格式，并且很容易整合 进入现有的临床工作流程。 我们建议通过识别患者对信息进行测序信息的需求和 利用这些知识设计动态的，面向患者的，基于网络的癌症基因组测序报告 将与电子健康记录集成（AIM 1）。在设计过程中，我们将从 癌症患者，家庭成员和临床医生，以确保网络报告有用，可用，并且很容易 集成到临床工作流程中。在第二阶段，我们将评估 通过Web报告向学术治疗的癌症患者提供测序结果和基因组教育 和社区环境（AIM 2）。该项目完成后，我们将有能力测试 基于Web的患者测序报告在全面实施试验中的有效性。我们假设 当使用Web报告来增加癌症基因组测序结果的回归时，1） 增加患者的知识，积极参与护理的能力以及共享基因组的能力 与家人的信息； 2）它将增加肿瘤学家对基因组靶向的建议 疗法； 3）它将改善患者提供者的沟通，护理满意度和护理效率 送货。该试点和可行性健康IT项目，向医疗保健研究机构讲话 质量的设计研究领域，将利用我们开发的IT网络存储基因组 - 测序数据；生成动态的，医师指导的报告；并将患者与相关的临床相匹配 试验。我们对开源开发的承诺将使通用访问源代码和 促进基于Web的患者测序报告和IT网络的广泛传播。通过提供 直接访问其测序结果的患者，我们旨在确保他们了解必不可少的患者 他们疾病的基因组特征，并使他们知道他们需要积极参与 癌症护理决定。如果成功，该项目将有助于患者参与护理并成为关键 迈向提高癌症护理质量的目标。