Multigenerational Health Research using Population-Based Linked Databases: An International Review

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.

Risk factors for cerebral palsy in children in Taiwan

“…We retrieved the family health history for multiple generations and the relationship between children and their birth parents by linking the 2009 to the 2019 NHIRD, Birth Registration Database, and National Death Index Database 17 to generate population‐based evidence about the factors associated with CP in the birth cohort born between 2010 and 2016. Databases were linked using the encrypted National Identification Card Number and centralized in Taiwan's Health and Welfare Data Science Center.…”

“…We identified birth information from the Birth Registration Database, including birthweight, gestational age, multiple births, and mode of delivery. Information on the survival status of infants was obtained from the National Death Index Database 17 . The institutional review board (equivalent to the human research ethics committee) of Chung Shan Medical University Hospital approved the study (no.…”

“…Information on the survival status of infants was obtained from the National Death Index Database. 17 The institutional review board (equivalent to the human research ethics committee) of Chung Shan Medical University Hospital approved the study (no. CS1-20004).…”