Abstract

Family health history is a well-established risk factor for many health conditions but the systematic collection of health histories, particularly for multiple generations and multiple family members, can be challenging. Routinely-collected electronic databases in a select number of sites worldwide offer a powerful tool to conduct multigenerational health research for entire populations. At these sites, administrative and healthcare records are used to construct familial relationships and objectively-measured health histories. We review and synthesize published literature to compare the attributes of routinely-collected, linked databases for three European sites (Denmark, Norway, Sweden) and three non-European sites (Canadian province of Manitoba, Taiwan, Australian state of Western Australia) with the capability to conduct population-based multigenerational health research. Our review found that European sites primarily identified family structures using population registries, whereas non-European sites used health insurance registries (Manitoba and Taiwan) or linked data from multiple sources (Western Australia). Information on familial status was reported to be available as early as 1947 (Sweden); Taiwan had the fewest years of data available (1995 onwards). All centres reported near complete coverage of familial relationships for their population catchment regions. Challenges in working with these data include differentiating biological and legal relationships, establishing accurate familial linkages over time, and accurately identifying health conditions. This review provides important insights about the benefits and challenges of using routinely-collected, population-based linked databases for conducting population-based multigenerational health research, and identifies opportunities for future research within and across the data-intensive environments at these six sites.

Highlights

  • Health history is a well-established risk factor for many health conditions, including heart disease, Type 2 diabetes, some cancers, and some mental health conditions

  • We examine the types of data available and explore the challenges associated with using routinely-collected, population-based electronic databases for multigenerational health research

  • While we initially focused on papers that described the methods and data sources used to achieve familial linkages at the six sites (12 papers identified in total), we identified health conditions and events that have been the focus of published studies

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Summary

Introduction

Health history is a well-established risk factor for many health conditions, including heart disease, Type 2 diabetes, some cancers, and some mental health conditions. Three European sites (Denmark, Norway, Sweden) and three non-European sites (Canadian province of Manitoba, Taiwan, Australian state of Western Australia) have the unique capability to define familial relationships and objectively-measured health histories from administrative and healthcare electronic records. Studies from these sites have made important contributions to understanding associations between familial health histories and individual outcomes for a broad range of health conditions or life events [6,7,8,9,10,11,12,13,14]. We conclude this review by describing potential opportunities for future research within and across the data-intensive environments at these six sites

Literature search strategy and included sites
Discussion
Findings
Methods

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