Katz Alan, Enns Jennifer, Wong Sabrina T, Williamson Tyler, Singer Alexander, McGrail Kimberlyn, Bakal Jeffery A, Taylor Carole, Peterson Sandra
Manitoba Centre for Health Policy Community Health Sciences, Max Rady College of Medicine, Rady Faculty of Health Sciences, Room 408-727 McDermot Ave. University of Manitoba, Winnipeg, MB R3E 3P5 Canada.
Centre for Health Services and Policy Research, School of Population and Public Health and School of Nursing, University of British Columbia, 2206 East Mall Vancouver, BC Canada V6T 1Z3.
Int J Popul Data Sci. 2018 Oct 5;3(3):437. doi: 10.23889/ijpds.v3i3.437.
Over the last 30 years, public investments in Canada and many other countries have created clinical and administrative health data repositories to support research on health and social services, population health and health policy. However, there is limited capacity to share and use data across jurisdictional boundaries, in part because of inefficient and cumbersome procedures to access these data and gain approval for their use in research. A lack of harmonization among variables and indicators makes it difficult to compare research among jurisdictions. These challenges affect the quality, scope, and impact of work that could be done. The purpose of this paper is to compare and contrast the data access procedures in three Canadian jurisdictions (Manitoba, Alberta and British Columbia), and to describe how we addressed the challenges presented by differences in data governance and architecture in a Canadian cross-jurisdictional research study. We characterize common stages in gaining access to administrative data among jurisdictions, including obtaining ethics approval, applying for data access from data custodians, and ensuring the extracted data is released to accredited individuals in secure data environments. We identify advantages of Manitoba's flexible 'stewardship' model over the more restrictive 'custodianship' model in British Columbia, and highlight the importance of communication between analysts in each jurisdiction to compensate for differences in coding variables and poor quality data. Researchers and system planners must have access to and be able to make effective use of administrative health data to ensure that Canadians continue to have access to high-quality health care and benefit from effective health policies. The considerable benefits of collaborative population-based research that spans jurisdictional borders have been recognized by the Canadian Institutes for Health Research in their recent call for the creation of a National Data Platform to resolve many of the issues in harmonization and validation of administrative data elements.
在过去30年里,加拿大和许多其他国家的公共投资创建了临床和行政健康数据存储库,以支持对健康与社会服务、人群健康及卫生政策的研究。然而,跨辖区共享和使用数据的能力有限,部分原因在于获取这些数据并获得其用于研究的批准的程序低效且繁琐。变量和指标缺乏一致性使得跨辖区的研究难以进行比较。这些挑战影响了可开展工作的质量、范围和影响力。本文旨在比较和对比加拿大三个辖区(曼尼托巴省、艾伯塔省和不列颠哥伦比亚省)的数据访问程序,并描述在一项加拿大跨辖区研究中我们是如何应对数据治理和架构差异带来的挑战的。我们描述了各辖区获取行政数据的常见阶段,包括获得伦理批准、向数据保管方申请数据访问,以及确保提取的数据在安全的数据环境中发布给经认可的人员。我们指出曼尼托巴省灵活的“管理”模式相对于不列颠哥伦比亚省更具限制性的“保管”模式的优势,并强调各辖区分析师之间沟通的重要性,以弥补编码变量差异和数据质量不佳的问题。研究人员和系统规划者必须能够获取并有效利用行政健康数据,以确保加拿大人能够持续获得高质量的医疗保健,并从有效的卫生政策中受益。加拿大卫生研究院在其近期呼吁创建一个国家数据平台以解决行政数据元素协调与验证中的诸多问题时,已经认识到跨辖区开展基于人群的合作研究的巨大益处。