CAMP FHIR: Lightweight, Open-Source FHIR Conversion Software to Support EHR Data Harmonization and Research

项目摘要 自我们于2008年成立以来，我们的分支机构，北卡罗来纳州转化和临床科学 研究所（TraCS）通过跨学科研究， 培训，与合作伙伴和利益相关者的合作，以及CTSA联盟的强有力参与。 我们已经建立了一个充满活力的大学，研究机构，医疗保健提供者和>130的区域网络 全国各地的社区组织。 在我们目前的资助周期中，我们正在翻译来自美国和整个CTSA的最好的科学 联盟成为创造性的，有效的，可访问的临床和社区干预措施，解决公众 我们国家的健康问题，并通过完成我们的总体目标推进国家CTSA目标。要求1 劳动力发展：发展和支持熟练和多样化的临床和转化研究 推动转化创新和解决医疗保健优先事项的劳动力。目标2协作和 参与：让不同的利益相关者作为积极的合作伙伴参与转化研究，并促进 团队科学的创新方法。目标3整合：整合学科的翻译研究， 目标4方法/过程：发展 传播创新方法和办法，以消除科学和业务障碍， 翻译科学发现。目标5信息学：采用先进的信息学工具和方法 在翻译研究的各个方面。 TraCS信息学和数据科学（IDSci）组件提供服务并开发新工具 提高研究生产力，减少个人研究人员和团队所需的努力， 开展有效的临床和转化研究。我们建立了可持续的跨机构信息学 基础架构和数据治理流程，确保数据安全，同时消除获取 研究完成。在我们目前的供资周期中，我们正在利用我们在开发当地资源方面的经验 和工具，以支持领先的国家信息学倡议，培训我们的翻译工作人员使用 信息学工具，包括来自其他CTSA中心的工具，提供安全和合规的数据管理 服务，在当地和全国范围内传播开源软件，并让社区参与其中， 通过数据和工具的共享，参与转化研究。 TraCS IDSci开发人员在2018年将CAMP FHIR概念化，以满足与 电子健康记录（EHR）数据以“批量”快速医疗保健互操作性资源（FHIR）格式，尽管 HL 7尚未发布最终的批量FHIR规范。(Bulk FHIR使EHR数据提取成为可能， 患者队列而不是一次一个患者，这对于基于人群的研究至关重要。营 FHIR填补了这一空白，使用户能够转换存储在通用数据模型（CDM）中的大量数据; i2 b2/ACT和PCORnet）直接发送到FHIR。在询问了同行机构的信息学团队后，我们意识到， 要求使用FHIR数据进行研究（包括NIH的要求，如2019年的 NOT-OD-19-122）领先于EHR供应商和HL 7的“官方”FHIR规范和功能 本身这鼓励我们继续开发CAMP FHIR，以支持更多的资源和领域， 最初的设想。 当前的提案是对NOT-OD-21-091的回应，并建立在IDSci的目标之上， 领先的信息学工具和方法，并将其提供给CTSA联盟。通过这个 补充，我们将更新和强化CAMP FHIR（即，使CAMP FHIR更加稳健） 工程最佳实践，并确保在云上的可部署性。我们的最终目标是创造和 支持CAMP FHIR用户的CTSA社区，他们可以独立和协作地使用该工具， 并随着时间的推移继续参与开源开发。更新《难民营FHIR》的工作 建议的方式将大大增加用户的数量和软件的影响，并在 CTSA的使命和我们的上级奖项的范围。然而，为准备CAMP FHIR的活动， 在CTSA联盟中广泛传播需要的资源超出了我们目前提供的资源 CTSA奖。我们相信，整个CTSA财团都可以从以下能力中受益： 将CDM数据转换为FHIR（反之亦然），促进对新研究问题的有效调查 并加速改善人类健康和病人护理的发现。

Project Summary Since our inception in 2008, the UNC CTSA affiliate, the North Carolina Translational and Clinical Sciences Institute (TraCS) has transformed clinical and translational science at UNC through interdisciplinary research, training, collaboration with partners and stakeholders, and strong engagement across the CTSA consortium. We have built a dynamic regional network of universities, research institutes, health care providers, and >130 community organizations across our state. In our current funding cycle, we are translating the best science from UNC and across the CTSA consortium into creative, effective, and accessible clinical and community interventions, addressing the public health problems of our state and advancing national CTSA goals by completing our Overall Aims. Aim 1 Workforce Development: Develop and support a skilled and diverse clinical and translational research workforce to advance translational innovations and address healthcare priorities. Aim 2 Collaboration and Engagement: Engage diverse stakeholders as active partners in translational research, and promote innovative approaches to team science. Aim 3 Integration: Integrate translational research for disciplines and populations across the research continuum and throughout the lifespan; Aim 4 Methods/Processes: Develop and disseminate innovative methods and approaches to address scientific and operational barriers to translating scientific findings. Aim 5 Informatics: Incorporate cutting-edge informatics tools and methodologies in every aspect of translational research. The TraCS Informatics and Data Science (IDSci) component provides services and develops new tools that increase research productivity and reduce the effort required by individual researchers and teams to conduct effective clinical and translational research. We have built sustainable, cross-institutional informatics infrastructure and data governance processes that keep data secure while removing barriers to getting research done. In our current funding cycles, we are building on our experience in developing local resources and tools to support leading national informatics initiatives, training our translational workforce on the use of informatics tools including those from other CTSA hubs, providing secure and compliant data management services, disseminating open source software locally and nationally, and engaging communities of stakeholders in translational research via the sharing of data and tools. TraCS IDSci developers conceptualized CAMP FHIR in 2018 in response to a need to work with electronic health record (EHR) data in “bulk” Fast Healthcare Interoperability Resources (FHIR) format, despite HL7 not having released a finalized bulk FHIR specification. (Bulk FHIR enables EHR data extraction for large cohorts of patients rather than one patient at a time, which is essential for population-based research.) CAMP FHIR fills this gap, enabling users to convert large amounts of data stored in common data models (CDMs; i2b2/ACT and PCORnet) directly to FHIR. After inquiring with informatics teams at peer institutions, we realized that demands to use FHIR data for research (including NIH’s request to do so, as described in 2019’s NOT-OD-19-122) were ahead of “official” FHIR specifications and capabilities from EHR vendors and HL7 itself. This encouraged us to continue development of CAMP FHIR to support more resources and fields than originally envisioned. This current proposal is in response to NOT-OD-21-091 and builds on IDSci’s aim to develop leading-edge informatics tools and methods and make these available to the CTSA consortium. Through this supplement, we will update and harden CAMP FHIR (i.e., make CAMP FHIR more robust) using software engineering best practices, as well as ensure deployability on the cloud. Our ultimate goal is to create and support a CTSA community of CAMP FHIR users who can use the tool both independently and collaboratively, and continue to engage in open-source development over time. The work to update CAMP FHIR in the proposed manner will greatly increase the number of users and impact of the software, and is within the mission of the CTSA and the scope of our parent award. However, the activities to prepare CAMP FHIR for broad dissemination across the CTSA consortium require resources beyond what is provided in our current CTSA award. We believe the entirety of the CTSA consortium could benefit from having the capability to convert CDM data to FHIR (and vice versa), facilitating the efficient investigation of novel research questions and hastening discoveries that improve human health and patient care.