BioCADDIE: Biomedical and healthCAre Data Discovery and Indexing Engine center

描述（由申请人提供）：生物医学和医疗保健数据共享工作目前由于缺乏(1)数据生产者的适当激励和共享工具，(2)数据标准化和数据索引的实用框架，以及(3)有效的数据发现机制而受到损害。BioCADDIE是一个由数据生产者、策展人、出版商和消费者组成的联盟，他们将共同努力，为生物医学和医疗保健数据发现问题开发实用、可持续的解决方案。通过解决上述障碍的工作组和相应的试点项目，我们将促进公开讨论，为什么目前花费数百万美元用于生成数据，而这些数据仍然保留在其原始位置，或者只是为了遵守资助机构和科学期刊的授权而以次优方式共享。我们将推动制定数据共享和数据发现的激励措施、政策和工具。我们将与研究人员、临床医生、患者和一般社区进行公开对话，重点讨论生物医学和临床数据共享的利弊。BioCADDIE的具体目标是：(1)组织由对数据生产、传播和利用感兴趣的社区代表组成的工作组。我们将在生物医学和临床研究人员、专业协会、期刊出版商、资助机构、临床医生、患者和信息科学家之间组织年度研讨会、讲习班和基于互联网的讨论，讨论使数据易于被不同类型的用户发现的最佳、可持续的做法。(2)促进为生物医学和卫生保健数据收集制定现实的、最小的、友好的元数据规范和注释，以及相应的自动索引工具，以便用户能够定位与他们特定的自由文本搜索相关的数据。(3)通过资助高度创新、高风险的试点研究项目来孵化新技术，这些项目能够开发新的数据发现和索引引擎，并由我们不同的利益相关者社区进行测试。我们在本提案中只描述了一小部分种子试点项目，因为BioCADDIE每年都会为新的试点项目征求建议，并通过涉及各个利益相关者社区的审查过程进行选择。

DESCRIPTION (provided by applicant): Biomedical and healthcare data sharing efforts are currently impaired by lack of (1) proper incentives and sharing tools for data producers, (2) practical frameworks for data standardization and indexing of data, and (3) effective data discovery mechanisms. BioCADDIE is a consortium of data producers, curators, publishers, and consumers who will work together to develop practical, sustainable solutions to the problem of biomedical and healthcare data discovery. Through task forces and corresponding pilot projects addressing the barriers enumerated above, we will promote open discussion of why millions of dollars are currently spent in the generation of data that remain captive at their origin or are shared in a sub-optimal way just to comply with mandates from funding agencies and scientific journals. We will promote the development of incentives, policies, and tools for data sharing and data discovery. We will engage researchers, clinicians, patients, and the community in general in an open dialogue focused on pros and cons of biomedical and clinical data sharing. BioCADDIE's specific aims are to: (1) Organize task forces with representatives from communities who have interest in data production, dissemination, and utilization. We will organize an annual symposium, workshops, Internet-based discussions among biomedical and clinical researchers, professional societies, journal publishers, funding agencies, clinicians, patients, and information scientists on best, sustainable practices for making data easily discoverable by different types of users. (2) Promote the development of realistic, minimal, friendly meta-data specifications and annotations for biomedical and healthcare data collections, and corresponding tools for automated indexing so that users will be able to locate data that are relevant to their specific free text searches. (3) Incubate new technologies by funding highly innovative, high-risk pilot research projects that enable the development of novel data discovery and indexing engines and have them tested by our diverse community of stakeholders. We only describe a small number of seed pilot projects in this proposal because BioCADDIE will solicit proposals for new pilot projects every year and select them through a review process involving the various stakeholder communities.