I3DEAL for HIV Research

描述（由申请人提供）：在过去和正在进行的研究中收集的数据有可能增加对HIV相关神经行为和心理社会后果对日常功能活动的病因学和轨迹的了解，并作为开发新型，高质量，有效干预措施的指南，用于预防和治疗这些后果。然而，很少有人努力将研究中的联合收割机数据结合起来。虽然这些努力将大大增加所收集的数据对解决艾滋病毒相关问题的价值，但仍存在一些技术和非技术障碍。我们已经解决了这样的障碍，在AHRQ资助的华盛顿高地英伍德信息基础设施的比较有效性研究（WICER）和它的继任者（WICER 4 U），我们建立在这些经验的基础上，创建创新的信息基础设施，以支持数据集成探索和分析纵向研究（I3 DEAL）艾滋病研究。尽管以发送和接收系统都理解所有数据的方式在异构健康护理系统之间共享数据（即，语义互操作性）尚未实现，但已取得重大进展，而且一致认为句法方法不足以实现这一目的。语义方法与I3 DEAL for HIV Research特别相关，原因有多个，包括我们不仅要整合异构的HIV研究数据集，还要整合来自WICER Research Data Warehouse（RDW）和纽约长老会哥伦比亚大学医学中心（NYP-PARC）RDW的去识别临床数据，以创建I3 DEAL for HIV Research RDW。由于在信息学和艾滋病毒，包括其神经行为和心理社会后果的广泛专业知识，我们的研究团队是唯一有资格实现I3 DEAL的艾滋病毒研究的具体目标是：1。实施语义方法来正式表示和整合现有HIV纵向数据集的不同集合中的项目，以创建I3 DEAL for HIV Research RDW。 2.应用并改进创新算法方法，从WICER RDW和NYP-PICIC RDW中发现HIV阴性个体，以创建一个神经行为和心理社会规范的通用数据库，并将其整合到I3 DEAL for HIV Research RDW中。 3.优化研究数据浏览器（RedX），以满足HIV研究人员的需求。I3 DEAL for HIV Research的主要产品将是I3 DEAL for HIV Research RDW，包括神经行为和心理社会规范的通用数据库，两个针对HIV研究而改进的信息学工具：非特征偏差的统计校正（SCRUB）算法和RedX查询工具，以及数据治理政策和程序。

DESCRIPTION (provided by applicant): Data collected in past and ongoing research studies have the potential to increase knowledge of etiology and trajectories of HIV-associated neurobehavioral and psychosocial consequences on activities of daily functioning and to serve as a guide in the development of novel, high quality, effective interventions for the prevention and treatment of these consequences. However, few efforts have been made to combine data across studies. Although such efforts would significantly increase the value of the collected data to address HIV-related questions, several technical and non-technical barriers exist. We have addressed such barriers in the AHRQ-funded Washington Heights Inwood Informatics Infrastructure for Comparative Effectiveness Research (WICER) and its successor (WICER 4 U) and we build upon these experiences to create the Innovative Informatics Infrastructure to Support Data Integration Exploration and Analysis for Longitudinal Studies (I3DEAL) for HIV Research. Although data sharing among heterogeneous healthcare systems in a manner in which all data are understood by both the sending and receiving systems (i.e., semantic interoperability) has not been achieved, significant progress has been made and there is agreement that syntactic approaches are insufficient for this purpose. Semantic approaches are particularly relevant to I3DEAL for HIV Research for multiple reasons including the fact that we will be integrating not only heterogeneous HIV research data sets, but also de-identified clinical data from the WICER Research Data Warehouse (RDW) and the NewYork-Presbyterian Columbia University Medical Center (NYP-CUMC) RDW, to create the I3DEAL for HIV Research RDW. Because of extensive expertise in informatics and HIV including its neurobehavioral and psychosocial consequences, our research team is uniquely qualified to achieve the specific aims of I3DEAL for HIV Research which are to: 1. Implement semantic approaches to formally represent and integrate the items from a diverse collection of existing HIV longitudinal data sets to create the I3DEAL for HIV Research RDW. 2. Apply and refine innovative algorithmic methods to discover HIV negative individuals from the WICER RDW and NYP-CUMC RDW to create a common database of neurobehavioral and psychosocial norms for integration into the I3DEAL for HIV Research RDW. 3. Refine Research Data Explorer (RedX) to meet the needs of HIV investigators. The primary products of I3DEAL for HIV Research will be the I3DEAL for HIV Research RDW including the common database of neurobehavioral and psychosocial norms, two informatics tools refined for HIV research: the Statistical CorRection of Uncharacterized Bias (SCRUB) algorithm and RedX query tool, and data governance policies and procedures.