Rheumatology Informatics System for Effectiveness Patient-Reported Outcome (RISE-PRO) Dissemination Project

项目摘要 患者报告的结局（PRO）在类风湿性关节炎（RA）中很重要， 这是数百万美国人，是导致残疾的主要原因。在慢性疾病中，RA具有数十年的 围绕PRO有效性的强有力的科学证据。PRO是RA临床试验中的关键结局指标 和研究，对治疗变化有反应，是未来残疾和死亡率的强有力预测因子， 在促进共同决策和治疗方面发挥核心作用。卫生信息方面的进展 技术（IT），如电子健康记录支持的合格临床数据登记（QCDR），提供了一个 有机会在全国范围内扩大和推广使用PRO措施。流变学信息系统 有效性（RISE）登记研究是2014年建立的QCDR，旨在提高患者的护理质量 在风湿病学实践中看到的。RISE信息平台汇总了来自以下方面的电子健康记录数据： 参与实践，集中分析这些数据，并将质量指标的绩效反馈给 临床医生使用基于网络的仪表板。RISE目前包括一个最大的PRO测量工作， 在美国，患有慢性病的非卧床患者。然而，随着登记册的成熟， 在我们的国家PRO测量工作中仍然存在重大差距，包括缺乏公众代表性， 医院系统和高危人群，一些实践在创建结构化数据时面临的挑战 电子健康记录中的字段，以获取PRO测量分数，以及评估 通过RISE进行PRO收集工作。本提案的总体目标是系统地解决 1）建立一个以证据为基础的临床学习网络，以支持公众的参与 通过RISE进行PRO测量和改进工作的医院系统，2）开发和扩展 自然语言处理系统，用于从临床笔记中的非结构化数据中提取PRO度量，以及3） 通过RISE分析PRO测量对RA护理质量和健康结局的影响。这 该提案建立在RISE注册中心的新型信息平台上，以扩展、传播和评估PRO 在全国范围内的流变学实践网络中实施，最终目标是提高 RA患者的功能状态结果。

PROJECT SUMMARY Patient-reported outcomes (PROs) are important in rheumatoid arthritis (RA), a condition that affects 1.3 million Americans and is a leading cause of disability. Among chronic conditions, RA has many decades of robust scientific evidence around the validity of PROs. PROs are key outcome measures in RA clinical trials and studies, are responsive to therapy changes, are strong predictors of future disability and mortality, and play a central role in facilitating shared decision-making and treatment. Advances in health information technology (IT), like electronic health record-enabled Qualified Clinical Data Registries (QCDRs), provide an opportunity to scale and spread of use of PRO measures nationally. The Rheumatology Informatics System for Effectiveness (RISE) registry is a QCDR that was established in 2014 to improve the quality of care for patients seen in rheumatology practices. The RISE informatics platform aggregates electronic health record data from participating practices, analyzes these data centrally and feeds performance on quality measures back to clinicians using a web-based dashboard. RISE currently includes one the largest PRO measurement efforts for ambulatory patients with a chronic disease in the United States. However, as the registry matures, several critical gaps remain in our national PRO measurement efforts, including the lack of representation of public hospital systems and at-risk populations, the challenges faced by some practices in creating structured data fields in electronic health records to capture PRO measure scores, and the need to evaluate the impact of the PRO collection efforts through RISE. The overarching goal of this proposal is to systematically address each of these issues by 1) creating an evidence-based clinical learning network to support the participation of public hospital systems in PRO measurement and improvement efforts through RISE, 2) developing and scaling a natural language processing system to extract PRO measures from unstructured data in clinical notes, and 3) analyzing the impact of PRO measurement through RISE on quality of care and health outcomes in RA. This proposal builds on the novel informatics platform of the RISE registry to scale, spread and evaluate PRO implementation across a nationwide network of rheumatology practices, with the ultimate goal of improving functional status outcomes for those with RA.