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加拿大开放健康数据存储库在组织、可发现性和获取方面面临的挑战。

Challenges with organization, discoverability and access in Canadian open health data repositories.

作者信息

Thornton Gail M, Shiri Ali

机构信息

School of Library and Information Studies, University of Alberta, Edmonton, AB.

Department of Mechanical Engineering, University of Alberta, Edmonton, AB.

出版信息

J Can Health Libr Assoc. 2021 Apr 2;42(1):45-65. doi: 10.29173/jchla29457. eCollection 2021 Apr.

Abstract

INTRODUCTION

Open health data provides healthcare professionals, biomedical researchers and the general public with access to health data which has the potential to improve healthcare delivery and policy. The challenge is to create and implement appropriate metadata, or structured data about the data, to ensure that data are easy to discover, access and re-use. The goal of this study is to identify, evaluate and compare Canadian open health data repositories for their searching, browsing and navigation functionalities, the richness of their metadata description practices, and their metadata-based filtering mechanisms.

METHODS

Metadata-based search and browsing was evaluated in addition to the number and nature of metadata elements. Six Canadian open health data repositories across national, provincial and institutional levels were evaluated. Data collected using verbatim text recording was evaluated using an analytical framework based on the 2019 Dataverse North Metadata Best Practices guide and 2019 Data Citation Implementation Project roadmap.

RESULTS

All repositories required filtering to access "open health data." All repositories included 'subject' facets for filtering, and 'title' and 'description' on the Results List. Use case evaluations suggest improvements including advanced search, health-specific search terms, records for all repositories, and links to related publications.

DISCUSSION

Consistent use of 'title' and 'description' suggests that an interoperable interface is possible. Inconsistencies in records indicate the need for explicit, easy to find mechanisms to access metadata in repositories. The analytical framework represents first draft guidelines for metadata creation and implementation to improve organization, discoverability, and access to Canadian open health data.

摘要

引言

开放健康数据为医疗保健专业人员、生物医学研究人员和公众提供了获取健康数据的途径,这些数据有可能改善医疗服务和政策。挑战在于创建和实施适当的元数据,即关于数据的结构化数据,以确保数据易于发现、访问和重新使用。本研究的目的是识别、评估和比较加拿大开放健康数据存储库的搜索、浏览和导航功能、元数据描述实践的丰富程度以及基于元数据的筛选机制。

方法

除了评估元数据元素的数量和性质外,还对基于元数据的搜索和浏览进行了评估。对六个加拿大国家、省级和机构级别的开放健康数据存储库进行了评估。使用基于2019年Dataverse North元数据最佳实践指南和2019年数据引用实施项目路线图的分析框架,对逐字记录收集的数据进行了评估。

结果

所有存储库都需要进行筛选才能访问“开放健康数据”。所有存储库都包括用于筛选的“主题”方面,以及结果列表上的“标题”和“描述”。用例评估建议进行改进,包括高级搜索、特定于健康的搜索词、所有存储库的记录以及与相关出版物的链接。

讨论

“标题”和“描述”的一致使用表明可能存在可互操作的界面。记录中的不一致表明需要有明确、易于找到的机制来访问存储库中的元数据。该分析框架代表了用于创建和实施元数据的初稿指南,以改善加拿大开放健康数据的组织、可发现性和访问性。

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Administrative health data in Canada: lessons from history.加拿大的行政卫生数据:历史教训
BMC Med Inform Decis Mak. 2015 Aug 19;15:69. doi: 10.1186/s12911-015-0196-9.

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