The Health ePeople Resource for Mobilized Research

用于动员研究的 Health ePeople 资源

• 批准号: 9064457
• 负责人: GREGORY M MARCUS
• 金额: $ 198.75万
• 依托单位: UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
• 依托单位国家: 美国
• 财政年份: 2015
• 资助国家: 美国
• 起止时间: 2015-09-30 至 2020-07-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/9064457
• 关键词: 18 year old; Address; American Heart Association; Area; Award; Cardiovascular Diseases; Cardiovascular system; Cellular Phone; Characteristics; Clinical; Clinical Data; Clinical Research; Cohort Studies; Communities; Consent; Data; Data Base Management; Data Collection; Data Linkages; Data Sources; Databases; Development; Devices; Diet; Discipline; Electronic Health Record; Electronic Mail; Electronics; Emerging Technologies; Enrollment; Event; Foundations; Framingham Heart Study; Funding; Geographic Locations; Goals; Health; Health Resources; Institutional Review Boards; Internet; Investments; Lung; Methods; Modeling; Neurology; Obesity; Outcome; Participant; Patient Outcomes Assessments; Patients; Pattern; Physical activity; Population; Positioning Attribute; Principal Investigator; Privacy; Procedures; Protocols documentation; Randomized Controlled Trials; Recruitment Activity; Research; Research Infrastructure; Research Institute; Research Personnel; Resources; San Francisco; Security; Services; Surveys; System; Technology; Testing; Time; Transplantation; Urology; Validation; Water; Work; adjudicate; base; cardiovascular health; cohort; cost effective; data integration; data management; data sharing; design; digital; experience; flexibility; handheld mobile device; high standard; improved; industry partner; innovation; interest; mHealth; mobile application; novel; oncology; patient advocacy group; public health relevance; randomized trial; sensor; tool; user-friendly; volunteer; 18 year old; Address; American Heart Association; Area; Award; Cardiovascular Diseases; Cardiovascular system; Cellular Phone; Characteristics; Clinical; Clinical Data; Clinical Research; Cohort Studies; Communities; Consent; Data; Data Base Management; Data Collection; Data Linkages; Data Sources; Databases; Development; Devices; Diet; Discipline; Electronic Health Record; Electronic Mail; Electronics; Emerging Technologies; Enrollment; Event; Foundations; Framingham Heart Study; Funding; Geographic Locations; Goals; Health; Health Resources; Institutional Review Boards; Internet; Investments; Lung; Methods; Modeling; Neurology; Obesity; Outcome; Participant; Patient Outcomes Assessments; Patients; Pattern; Physical activity; Population; Positioning Attribute; Principal Investigator; Privacy; Procedures; Protocols documentation; Randomized Controlled Trials; Recruitment Activity; Research; Research Infrastructure; Research Institute; Research Personnel; Resources; San Francisco; Security; Services; Surveys; System; Technology; Testing; Time; Transplantation; Urology; Validation; Water; Work; adjudicate; base; cardiovascular health; cohort; cost effective; data integration; data management; data sharing; design; digital; experience; flexibility; handheld mobile device; high standard; improved; industry partner; innovation; interest; mHealth; mobile application; novel; oncology; patient advocacy group; public health relevance; randomized trial; sensor; tool; user-friendly; volunteer

 DESCRIPTION (provided by applicant): We seek to create the Health ePeople Resource, a nimble, readily-accessible, and reliable infrastructure to conduct mHealth research. This effort will build on the current Health eHeart Study, an internet-based clinical research platform that has enrolled more than 20,000 engaged participants from around the world. Although initially developed to study cardiovascular disease, Health eHeart is in use by investigators from multiple fields, and helps us jumpstart many of the objectives set out in the current RFA. We have successfully implemented a user-friendly interface built to collect patient-reported outcomes, validated survey data, and integrations with multiple sensors, devices, and apps; we have an IRB approved system using modular electronic consenting; we have over 20,000 deeply involved participants interested in contributing to mHealth research; we have developed ways for external investigators to utilize and enroll their own participants in a customizable fashion; we have developed a study management portal (including a real-time dashboard and participant characteristic- based filtering system) and a flexible messaging system that can be utilized by external investigators; we have built a database and data management system constructed to adhere to the highest standards of privacy, security, and reliability; and we have iterated and adapted the platform to take advantage of emerging technology and cutting-edge methods. Building from these strengths, we are ready to fully leverage the opportunities afforded by this award, transforming the Health eHeart Study into a general Health ePeople Resource. The primary goal of Health ePeople will be to provide a resource that enables convenient and efficient mHealth research. The Resource will help investigators collect mHealth data via integration with sensors, devices, and apps, deliver online surveys, connect with external data sources including electronic health records, and use novel methods for ascertaining and adjudicating clinical outcome events. The Resource will support utilization of patients already enrolled in the Health ePeople Cohort or "co-enrollment" (and data linkage) of participants recruited externally. We will utilize our experience engaging and consenting more than 20,000 patients to grow and expand a world-wide cohort of participants (the Health ePeople Cohort) interested in contributing to mHealth research. The platform will support development and validation of apps, including randomized controlled trials. This effort will leverage our experience working with foundations and patient-advocacy groups as well as our position in PCORnet and the resultant collaborative relationships with multiple large PCORI-funded Clinical Data Research Networks that can provide access to hundreds of millions of patients and their electronic health records. We will develop the technology, procedures and governance to support rapid access to the Health ePeople cohort for research, data sharing, analyses and integration with external databases. Finally, we will develop and test various models for providing access to Health ePeople resources and services that will assure financial sustainability beyond the award period.

 描述（由适用提供）：我们试图创建健康的居民资源，这是一种敏捷，易于访问且可靠的基础设施来进行MHealth研究。这项工作将基于当前的健康EHEART研究，这是一个基于Internet的临床研究平台，已招募了来自世界各地的20,000多名参与者。尽管最初开发用于研究心血管疾病的发展，但Health Eheart仍在多个领域的研究人员使用，并帮助我们开始了当前RFA中规定的许多目标。我们已经成功实施了一个构建的用户友好界面，以收集患者报告的结果，经过验证的调查数据以及与多个传感器，设备和应用程序的集成；我们使用模块化电子同意有IRB批准的系统；我们有20,000多名有兴趣为MHealth Research做出贡献的参与者；我们已经为外部调查人员开发了以可定制的方式利用和招募自己的参与者的方法。我们已经开发了一个研究管理门户网站（包括实时仪表板和基于特征的过滤系统）和一个灵活的消息传递系统，该系统可以由外部研究人员使用；我们已经建立了一个构建的数据库和数据管理系统，该系统遵循最高的隐私，安全性和可靠性标准；我们已经迭代并改编了平台，以利用新兴技术和尖端方法。通过这些优势，我们准备充分利用该奖项所提供的机会，将健康性研究转变为一般健康的居民资源。卫生主管的主要目标是提供一种能够方便有效的MHealth研究的资源。该资源将通过与传感器，设备和应用程序集成，进行在线调查，与包括电子健康记录在内的外部数据源进行连接，并使用新颖的方法来确定和调整临床结果事件，并与外部数据源进行连接。该资源将支持已经在外部招募的参与者的卫生心脏同类队列或“共同入学率”（以及数据链接）的患者的利用。我们将利用我们参与并同意20,000多名患者的经验来成长和扩展有兴趣为MHealth研究做出贡献的全球参与者（卫生表演同类人群）。该平台将支持应用程序的开发和验证，包括随机对照试验。这项工作将利用我们与基金会和患者顾问组一起工作的经验，以及我们在PCORNET中的地位以及与多个大型PCORI资助的临床数据研究网络的合作关系，这些关系可以为数亿名患者及其电子健康记录提供访问。我们将开发技术，程序和治理，以支持快速访问卫生表现同类群体，以进行研究，数据共享，分析和与外部数据库的集成。最后，我们将开发和测试各种模型，以提供获得健康居民资源和服务的访问权限，这些资源和服务将确保颁奖典礼以后的财务可持续性。