Challenges Associated with Cross-Jurisdictional Analyses using Administrative Health Data and Primary Care Electronic Medical Records in Canada.

Alan Katz,Jennifer Enns,Alexander Singer,Sandra Peterson,Jeffery A Bakal,Carole Taylor,Tyler Williamson,Sabrina T Wong,Kimberlyn Mcgrail

doi:10.23889/ijpds.v3i3.437

Abstract

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.

Highlights

While in the past there has been doubt about the ability of ‘big data’ to generate research findings that can impact healthcare in a meaningful way, the value of administrative health data is increasingly recognized in research, health services planning and evaluation, and clinical care [1,2]
We describe the challenges and successes of a collaboration spanning three Canadian jurisdictions, examining administrative health and primary care electronic medical record (EMR) data in pursuit of an algorithm for identifying frailty in community-dwelling older adults (Box 1 provides a brief overview of this cross-centre study)
The majority of this paper focuses on the administrative health data that were obtained from Manitoba and B.C; the Alberta portion of the Frailty Study will be detailed in a future publication

Summary

Introduction

While in the past there has been doubt about the ability of ‘big data’ to generate research findings that can impact healthcare in a meaningful way, the value of administrative health data is increasingly recognized in research, health services planning and evaluation, and clinical care [1,2]. Our work within the more restrictive custodianship model of data governance in B.C. has underscored the need to communicate data access requests clearly and completely to avoid delays and unnecessary expenditures Another major challenge we encountered in this research was the difference in data architecture (or how the data were structured, arranged or coded) between Manitoba and B.C. While some administrative health datasets, like the Hospital Discharge Abstract Database, are national and can be used to draw comparisons across the country, many provincial centres hold data that are organized or defined in a provincespecific way. Efforts to harmonize and validate datasets to make them comparable across provinces will advance multijurisdictional population health and health services studies on priority topics and build capacity for impactful Pan-Canadian health policy research

Conclusion

Council of Canadian Academies