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C-D3-04: Governing Access to a Distributed Research Network’s Data Resources

机译:C-D3-04:管理对分布式研究网络数据资源的访问

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摘要

To answer many public health questions, it is essential to use information from more than one electronic data system, and efficient ways are needed to securely access and use data from multiple organizations while respecting the regulatory, legal, proprietary, and privacy implications of this data use and access. One approach centers on the development of distributed research networks that allow data owners to maintain confidentiality and physical control over their data, while permitting authorized users to ask essential questions. Once such a network is fully operating and key elements are in place, sharable data resources can be made available to approved network users, under approved conditions. For instance, data from a large cohort of hypertensive patients with five years of utilization (a hypertension cohort) could be available on the network. The following questions will need to be addressed: Who can have access? Under what conditions should access be granted? What policies/procedures are required? To address the specific needs associated with governance of a network’s resource(s), the authors call for the establishment of user eligibility requirements, policies to deal with funders (i.e., access rules for study funders), clear standard operating procedures, and guidelines for accessing the network. Recommendations to meet to those needs include: class="enumerated" style="list-style-type:decimal">establishing data oversight policies;defining responsibilities for data resource access;defining responsibilities for data owners at each site (i.e., responding to queries when requests come in);creating standard operating procedures for the data resource;creating collaboration guidelines for external partners; andmonitoring overall resource use.For the purpose of this poster, we propose to illustrate responsibilities for data owners at each site.
机译:为了回答许多公共卫生问题,必须使用来自多个电子数据系统的信息,并且需要有效的方法来安全地访问和使用来自多个组织的数据,同时尊重该数据的法规,法律,专有和隐私含义。使用和访问。一种方法集中在分布式研究网络的开发上,该网络允许数据所有者对数据进行保密和物理控制,同时允许授权用户提出基本问题。一旦这样的网络完全运行并且关键要素到位,就可以在批准的条件下将可共享的数据资源提供给批准的网络用户。例如,可以从网络上获得大量使用5年的高血压患者队列(高血压队列)的数据。需要解决以下问题:谁可以访问?在什么情况下应该准予访问?需要什么政策/程序?为了满足与网络资源治理相关的特定需求,作者呼吁建立用户资格要求,与资助者打交道的政策(即研究资助者的访问规则),明确的标准操作程序以及有关准则。访问网络。满足这些需求的建议包括: class =“ enumerated” style =“ list-style-type:decimal”> <!-list-behavior =枚举前缀word = mark-type = decimal max-label-size = 0-> 建立数据监督策略; 定义数据资源访问的职责; 定义每个站点的数据所有者的职责(即,在请求时响应查询来); 为数据资源创建标准操作程序; 为外部合作伙伴创建协作指南; 监视整个资源的使用。 就此发布者而言,我们建议说明每个站点上数据所有者的职责。

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