BioCADDIE: Biomedical and healthCAre Data Discovery and Indexing Engine center

描述(由申请人提供)：生物医学和保健数据共享的努力目前由于缺乏(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，为生物医学和保健数据发现问题开发实用、可持续的解决方案。通过工作队和解决上述障碍的相应试点项目，我们将促进公开讨论，为什么目前花费数百万美元来生成原始数据，或者仅仅为了遵守供资机构和科学期刊的授权就以次优方式共享这些数据。推动数据共享和数据发现的激励、政策和工具建设。我们将让研究人员、临床医生、患者和整个社区参与一场公开对话，重点是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特别工作组。我们将组织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的年度研讨会、研讨会和基于互联网的讨论，讨论如何使不同类型的用户容易地发现数据的最佳、可持续的做法。(2)促进为生物医学和保健数据集合开发现实、最少、友好的元数据规范和注释，以及用于自动索引的相应工具，以便用户能够找到与其特定自由文本搜索相关的数据。(3)通过资助高创新、高风险的试验性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。我们在这项提案中只描述了少数种子试点项目，因为BioCADDIE每年都会为新的试点项目征集提案，并通过涉及不同利益攸关方社区的审查程序进行选择。

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.