Development of a Statewide Master Person Index

描述（由申请人提供）：我们的目标是创建一个主个人索引（MPI），明确地识别在犹他州接受医疗保健的每个人。该索引将使合格的临床和转化研究能够在具有独特属性的环境中进行：(1)该州80%以上的患者护理由三家供应商提供，这些接触（门诊和住院）以电子方式记录；(2)在创建研究基础设施（犹他州人口数据库）方面拥有其他州无法比拟的丰富经验，该数据库提供了犹他州大部分人口的人口统计和家族描述，并与相应的医疗数据相关联。我们建议为全州范围的MPI创建技术和政策，以满足跨不同机构链接记录的关键需求。每个MPI条目只包含足够的信息来唯一地标识个人并将该个人映射到原始数据源。虽然MPI将不包含特定遭遇的信息，但它将为合格的调查人员提供将机构记录与特定患者的纵向健康史联系起来的能力。这一提议的结果将是一个独特的研究基础设施，但其战略和方法可以作为其他机构的典范。它的影响将与美国国立卫生研究院和中心支持的各种研究兴趣广泛相关。为了解决在不同机构之间安全保密地链接记录的挑战，我们将建立一个全州范围的主人物索引，其中包括来自提供机构的人口统计信息的主存储库（数据库），以及存储库周围的服务，以允许授权访问。我们将制定指导方针，以确保机构有能力为全州MPI做出贡献、使用和保护。研究实施记录匹配归并方法。我们将演示卫生保健和公共卫生机构向MPI添加新记录、更新现有记录以及查询存储库以获取到其他机构相应人员记录的链接的能力。我们将利用该州的卫生信息交换基础设施来证明该系统在全州范围内的可扩展性。我们将开发一种治理和融资模式，以确保全州MPI的长期可行性。这一提议的结果将是一个独特的研究基础设施，但其战略和方法可以作为其他机构的典范。

DESCRIPTION (provided by applicant): Our goal is to create a Master Person Index (MPI) that unambiguously identifies each individual who receives health care in the State of Utah. This index will enable qualified clinical and translational research to be performed in an environment with unique attributes: (1) over 80% of all patient care in the State is supplied by three providers, and these encounters (ambulatory and in-patient) are recorded electronically; and (2) extensive experience unmatched in other states of creating a research infrastructure (the Utah Population Database) that provides a demographic and familial description for much of the population of Utah and that is linked to corresponding medical data. We propose to create the technology and policies for a statewide MPI in order to satisfy the critical need to link records across disparate institutions. Each MPI entry will contain only enough information to uniquely identify an individual and map that individual to original data sources. While the MPI will not contain encounter-specific information, it will provide the capability for qualified investigators to link institutional records into patient-specific longitudinal health histories. The outcome of this proposal will be a unique research infrastructure but with strategies and methodologies that can be adopted as a model for other institutions. Its impact would have broad relevance to a variety of research interests supported by NIH Institutes and Centers. To address the challenge of securely and confidentially linking records across disparate institutions, we will establish a statewide Master Person Index that includes a master repository (database) of demographic information from the contributing institutions, and the services surrounding the repository to allow authorized access. We will establish guidelines to ensure institutions the ability to contribute to, use, and safeguard the statewide MPI. We will investigate and implement methods for matching and merging records. We will demonstrate the ability of health care and public health institutions to add new records to the MPI, update existing records, and query the repository for links to corresponding person-records at other institutions. We will utilize the State's health information exchange infrastructure to prove extensibility of the system to the statewide environment. We will develop a governance and financing model that will ensure the long-term viability of the statewide MPI. The outcome of this proposal will be a unique research infrastructure but with strategies and methodologies that can be adopted as a model for other institutions. PUBLIC HEALTH RELEVANCE: A statewide MPI will satisfy the critical need to link records across disparate institutions in order to provide the capability for qualified investigators, clinicians and public health officials to link institutional records into patient- specific longitudinal health histories. The development of this critical resource will have a significant statewide impact on the entire population of the Utah for research, clinical and public health outcomes. We also anticipate a national impact because of our goal to provide MPI guidelines and methodologies that could be adopted by other states and regions, and because use of the MPI will facilitate studies with broader applicability of research results.