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

项目总结 患者报告的结果(PRO)对影响1.3的类风湿性关节炎(RA)很重要 这是导致残疾的主要原因。在慢性疾病中，类风湿性关节炎有几十年的 围绕专业人士有效性的强有力的科学证据。PRO是类风湿关节炎临床试验的关键结果指标 和研究，是对治疗变化的反应，是未来残疾和死亡率的有力预测因素，以及 在促进共同决策和治疗方面发挥核心作用。健康信息的研究进展 技术(IT)，如启用电子健康记录的合格临床数据注册中心(QCDR)，提供了 在全国范围内扩大和推广使用有利措施的机会。风湿病信息学系统 有效性(Rise)登记处是一个QCDR，成立于2014年，旨在提高患者的护理质量 可见于风湿病诊所。RISE信息学平台将电子健康记录数据从 参与实践，集中分析这些数据，并将质量度量的绩效反馈给 使用基于Web的仪表板的临床医生。Rise目前包括一项规模最大的专业测量工作 在美国患有慢性病的门诊患者。然而，随着登记处的成熟，有几个 在我们的国家计量工作中仍然存在严重差距，包括缺乏公众代表性 医院系统和高危人群，一些做法在创建结构化数据方面面临的挑战 电子健康记录中的字段以获取PRO MEASURE分数，以及评估 通过PRO收集努力提升。这项提案的首要目标是系统地解决每一个 这些问题通过1)创建循证临床学习网络来支持公众的参与 医院系统通过RISE进行专业测量和改进工作，2)开发和扩展 自然语言处理系统，用于从临床病历的非结构化数据中提取预测措施，以及3) 通过RISE分析PRO测量对RA护理质量和健康结果的影响。这 建议书建立在RISE注册的新型信息学平台上，以扩展、传播和评估PRO 在全国风湿病实践网络中实施，最终目标是改善 类风湿性关节炎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.