CRII:SCH:RUI: A Digital Identity System for Accelerating Medical Communications within Rare Disease Communities

CRII:SC​​H:RUI：用于加速罕见疾病社区内医疗通信的数字身份系统

• 批准号: 2153232
• 负责人: Peng Zhang
• 金额: $ 16.05万
• 依托单位: Vanderbilt University
• 依托单位国家: 美国
• 项目类别: Standard Grant
• 财政年份: 2021
• 资助国家: 美国
• 起止时间: 2021-09-01 至 2023-12-31
• 项目状态: 已结题
• 来源: https://www.nsf.gov/awardsearch/showAward?AWD_ID=2153232&HistoricalAwards=false
• 关键词: CRII; SCH; RUI; Digital; Identity

Patient identity matching is a process that locates a patient in a healthcare database using a unique set of personal information. Rare diseases are conditions that affect fewer than 200,000 people in the US, and due to the small patient populations, they receive significantly less scientific and commercial attention compared to more commonly studied medical conditions. As a result, highly motivated and active patient communities often form around rare diseases, creating and maintaining patient registries for patients to share data and knowledge about their conditions to promote disease discovery. However, many registries have been one-off solutions that identify patients in disparate ways, creating a major barrier to linking patients across multiple highly centralized registries. The objective of this project is to address this need by developing an interoperable and efficient identity system to support necessary communications around rare diseases, while simultaneously providing interdisciplinary research experience to computer science undergraduate students.This project will design, deploy, and evaluate a digital identity system driven by interoperability across data management systems. The goal of the proposed approach is to accelerate the patient identification process by creating unique representations of patient identities and a supporting platform that facilitate the management and exchanges of those identities to ensure interoperability. The technical aims of the project are divided into three threads. The first thread creates a standardized digital identity model for rare diseases, which aims to uniquely represent patients without directly exposing sensitive, ambiguous patient identifying information to significantly reduce patient mismatching rate. The second thread develops a Rare Disease Identity System (RDIS) infrastructure, which will enable uniform and interoperable representations and transactions of patient identity to accelerate clinical communications. The third thread focuses on integrated evaluation of RDIS with the use of the digital identity model created in the first thread. In particular, the overall effectiveness of the system will be evaluated based on the ease of identity collection and verification process, the scalability of the system in terms of the overall and average throughput of transacted synthetic patient profiles, and the average turnaround time it takes to identify a subset of patient profiles.This award reflects NSF's statutory mission and has been deemed worthy of support through evaluation using the Foundation's intellectual merit and broader impacts review criteria.

患者身份匹配是一个使用一组独特的个人信息在医疗保健数据库中找到患者的过程。罕见的疾病是在美国影响少于200,000人的疾病，并且由于患者人数少，与更常见的医疗状况相比，他们受到的科学和商业关注明显降低。结果，高度动机和活跃的患者社区通常围绕罕见疾病形成，创建和维护患者的患者注册表，以共享有关其疾病的数据和知识，以促进疾病发现。但是，许多登记处一直是以不同方式识别患者的一次性解决方案，从而为在多个高度集中式注册表中连接患者造成了主要障碍。该项目的目的是通过开发可互操作和高效的身份系统来满足这一需求，以支持围绕罕见疾病的必要通信，同时为计算机科学本科生提供跨学科的研究经验。该项目将设计，部署和评估由跨数据管理系统互操作性驱动的数字身份系统。拟议方法的目的是通过创建患者身份的独特表示以及促进这些身份的管理和交流以确保互操作性的互助平台来加速患者识别过程。该项目的技术目标分为三个线程。第一个线程为稀有疾病创建了标准化的数字身份模型，该模型旨在唯一代表患者而不直接暴露敏感的，模棱两可的患者识别信息以显着降低患者的不匹配率。第二个线程开发出一种罕见的疾病认同系统（RDIS）基础设施，该基础设施将使患者身份的统一和可互操作表示以及交易以加速临床通信。第三个线程专注于对RDI的集成评估，并使用第一个线程中创建的数字身份模型。特别是，将根据身份收集和验证过程的易于性，系统的可伸缩性来评估系统的总体有效性，从而根据交易合成患者概况的总体和平均吞吐量以及确定患者奖励的子集所需的平均周转时间来评估NSF的法定任务和审查的次数通过评估范围，这是通过评估范围的范围。

项目成果

Design pattern recommendations for building decentralized healthcare applications

构建去中心化医疗保健应用程序的设计模式建议

• DOI: 10.3389/fbloc.2023.1006058
• 发表时间: 2023
• 期刊: Frontiers in Blockchain
• 影响因子: 3.1
• 作者: Zhang, Peng;Kelley, Adair;Schmidt, Douglas C.;White, Jules
• 通讯作者: White, Jules

Using Decentralized Identifiers and InterPlanetary File System to Create a Recoverable Rare Disease Patient Identity Framework

• DOI: 10.1145/3608298.3608325
• 发表时间: 2023-05
• 期刊: Proceedings of the 2023 7th International Conference on Medical and Health Informatics
• 作者: Sean Mchale;Lincoln Murr;Peng Zhang

Self-Sovereign Identity in Semi-Permissioned Blockchain Networks Leveraging Ethereum and Hyperledger Fabric

利用以太坊和 Hyperledger Fabric 的半许可区块链网络中的自我主权身份

• DOI: 10.1109/icdh60066.2023.00053
• 发表时间: 2023
• 期刊: IEEE International Conference on
• 作者: Sahi, Niranjan;Liang, Anda;Van Devanter, Wyn;Oikonomou, Konstantinos;Zhang, Peng
• 通讯作者: Zhang, Peng