The Kaiser Permanente National Research Database

凯撒医疗机构国家研究数据库

• 批准号: 7940818
• 负责人: Andrew L Avins
• 金额: $ 162.23万
• 依托单位: KAISER FOUNDATION RESEARCH INSTITUTE
• 依托单位国家: 美国
• 财政年份: 2009
• 资助国家: 美国
• 起止时间: 2009-09-30 至 2012-09-29
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7940818
• 关键词: Adverse event; Authorization documentation; California; Censuses; Centers for Disease Control and Prevention (U.S.); Clinical; Clinical Data; Clinical Research; Code; Computerized Medical Record; Country; Data; Data Protection; Data Set; Data Sources; Databases; Development; Diagnosis; Disease; Distributed Databases; Electronic Health Record; Epidemiology; Foundations; Funding; Genetic; Genomics; Goals; Government Agencies; Hawaii; Health; Health Insurance Portability and Accountability Act; Health Planning; Health Services Research; Health Status; Healthcare; Laboratories; Logical Observation Identifiers Names and Codes; Maps; Metadata; Modeling; Monitor; Morbidity - disease rate; Patients; Pharmaceutical Preparations; Phase; Policies; Privacy; Process; Regulation; Reporting; Research; Research Ethics Committees; Research Infrastructure; Research Personnel; Research Project Grants; Resources; Security; Source; System; Terminology; Time; Unified Medical Language System; United States Agency for Healthcare Research and Quality; United States National Institutes of Health; United States National Library of Medicine; cohort; comparative effectiveness; data sharing; database structure; design; effectiveness research; feeding; member; mortality; patient safety; post-market; public health relevance; regional difference; relational database; trend; Adverse event; Authorization documentation; California; Censuses; Centers for Disease Control and Prevention (U.S.); Clinical; Clinical Data; Clinical Research; Code; Computerized Medical Record; Country; Data; Data Protection; Data Set; Data Sources; Databases; Development; Diagnosis; Disease; Distributed Databases; Electronic Health Record; Epidemiology; Foundations; Funding; Genetic; Genomics; Goals; Government Agencies; Hawaii; Health; Health Insurance Portability and Accountability Act; Health Planning; Health Services Research; Health Status; Healthcare; Laboratories; Logical Observation Identifiers Names and Codes; Maps; Metadata; Modeling; Monitor; Morbidity - disease rate; Patients; Pharmaceutical Preparations; Phase; Policies; Privacy; Process; Regulation; Reporting; Research; Research Ethics Committees; Research Infrastructure; Research Personnel; Research Project Grants; Resources; Security; Source; System; Terminology; Time; Unified Medical Language System; United States Agency for Healthcare Research and Quality; United States National Institutes of Health; United States National Library of Medicine; cohort; comparative effectiveness; data sharing; database structure; design; effectiveness research; feeding; member; mortality; patient safety; post-market; public health relevance; regional difference; relational database; trend

DESCRIPTION (provided by applicant): This application proposes development of a unique resource designed to accelerate scientific progress - a National Research Database (NRDB) of Kaiser Permanente (KP) data that will contain clinical information on almost 30,000,000 current and past members of the Kaiser Foundation Health Plan in 8 regions of the country, with some data that spans a 40 year period. The database will be available to over 1,200 KP researchers, who are currently engaged in over 3,000 research projects, with a total funding of $60 million per year. Through data sharing mechanisms, a subset of the data will also be available to collaborating non-KP researchers. The need for a better research infrastructure is clear. Researchers are often frustrated by the difficulty of finding, extracting, cleaning, interpreting and transforming the data into useful analytical datasets. They often spend a disproportionate amount of time in these preparatory activities, rather than in the analytic phase of research projects. The primary reason for this is the absence of an efficient research data infrastructure that is optimized for the analytical needs of researchers. We have begun to develop such an infrastructure for the 3.3 million current and 10 million past Health Plan members in the KP Northern California region, in the form of a pilot Research Database (RDB). In this RDB, we have aggregated clinical data from legacy systems, the current electronic health record (EHR) system, various public use datasets, and research datasets into a research data warehouse. To develop the NRDB, four specific aims of the project will have to be achieved: 1) upgrade the pilot RDB by developing a uniform schema with consistent data definitions and coding, using standard terminology, that will harmonize aggregated legacy and current KP electronic health records, 2) develop interfaces and extract, transform and load (ETL) processes for the KP electronic medical record system and other clinical systems that will feed data to the NRDB, 3) implement a security model that is compliant with HIPAA and State regulations and KP policies, and 4) expand the pilot research database into a distributed database that will store data from the other seven KP regions. The NRDB will be a unique and valuable resource for clinical, epidemiological and health services research. It can be used in support of the health care goals of various government agencies (FDA, AHRQ, NIH), including comparative effectiveness research, biosurveillance, patient safety monitoring, post-marketing drug surveillance, geographical mapping of morbidity and mortality rates (by zip code or census tract), genetic and genomic studies, and many other types of research. Because KP has had some form of electronic health record for almost 40 years, the NRDB will provide a unique opportunity for researchers to study secular trends of disease, as well as following the health and disease status of large cohorts over time. PUBLIC HEALTH RELEVANCE: Kaiser Permanente (KP) has electronic health records (EHRs) on almost 30 million current and past members in 8 regions of the country. For the past 3 years we have been engaged in the creation of a pilot research database for KP Northern California, which constitutes about 1/3 of the health plan membership. The aim of this proposal is to enhance the pilot database, and expand it into a national research database (NRDB) that includes data extracted from the EHRs for all regions. The NRDB will be a unique and valuable resource for clinical, epidemiological and health services research. It will be available to over 1,200 KP researchers, who are currently engaged in over 3,000 research projects.

描述（由申请人提供）：本申请提出开发旨在加速科学进步的独特资源 - Kaiser Permanente（KP）数据的国家研究数据库（NRDB）数据，该数据将包含有关该国8个地区的Kaiser基金会健康计划的近30,000,000个现有和过去成员的临床信息，其中一些数据涵盖了40年的一年。该数据库将提供1200多个KP研究人员，他们目前从事3,000多个研究项目，每年总资金为6000万美元。通过数据共享机制，数据的一部分也将用于合作非KP研究人员。需要更好的研究基础设施的需求很明显。研究人员通常会因查找，提取，清洁，解释和将数据转换为有用的分析数据集的困难而感到沮丧。他们经常在这些准备活动中花费不成比例的时间，而不是在研究项目的分析阶段。造成这种情况的主要原因是缺乏针对研究人员的分析需求进行优化的有效研究数据基础架构。我们已经开始为北加利福尼亚州北加州地区的330万当前和1000万健康计划成员开发这种基础设施，并以试点研究数据库（RDB）的形式开发。在此RDB中，我们从传统系统，当前的电子健康记录（EHR）系统，各种公共用途数据集以及研究数据集中汇总了临床数据。要开发NRDB，必须实现该项目的四个具体目标：1）通过开发具有一致的数据定义和使用标准术语的统一模式来升级PILOT RDB，这些模式将在标准术语中进行一致的数据定义和编码，从而使聚合的遗留和当前的KP电子健康记录协调，2）供应界面，2）供应Interface and Intraint and Transce and transce and Intralsict and Intrally Medical（ET）。 3）实施一个符合HIPAA和州法规和KP策略的安全模型，以及4）将试验研究数据库扩展到分布式数据库中，该数据库将存储其他七个KP区域的数据。 NRDB将是临床，流行病学和健康服务研究的独特而宝贵的资源。它可以用于支持各种政府机构（FDA，AHRQ，NIH）的医疗保健目标，包括比较有效性研究，生物监视，患者安全监测，市场上市后的药物监视，发病率和死亡率的地理映射（通过邮政编码或人口普查）的地理位置图和遗传和种类范围研究以及许多其他类型的研究。由于KP拥有某种形式的电子健康记录已有近40年的历史，因此NRDB将为研究人员提供一个独特的机会研究疾病的世俗趋势，并遵循随着时间的推移的大型人群的健康和疾病状况。 公共卫生相关性：Kaiser Permanente（KP）拥有该国8个地区的近3000万当前和过去成员的电子健康记录（EHR）。在过去的三年中，我们一直为KP北加州创建一个试点研究数据库，该数据库构成了健康计划成员资格的约1/3。该提案的目的是增强试点数据库，并将其扩展到国家研究数据库（NRDB）中，其中包括从EHR中提取的所有地区提取的数据。 NRDB将是临床，流行病学和健康服务研究的独特而宝贵的资源。目前从事3,000多个研究项目的1200多名KP研究人员将使用它。