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

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...

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Main Authors: Naomi C. Hamm, Amani F Hamad, Elizabeth Wall-Wieler, Leslie L Roos, Oleguer Plana-Ripoll, Lisa M Lix
Format: Article
Language:English
Published: Swansea University 2021-10-01
Series:International Journal of Population Data Science
Subjects:
Online Access:https://ijpds.org/article/view/1686
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spelling doaj-862aae10c7cf4c3fad11bfbd4f966c162021-10-10T17:56:34ZengSwansea UniversityInternational Journal of Population Data Science2399-49082021-10-016110.23889/ijpds.v6i1.1686Multigenerational Health Research using Population-Based Linked Databases: An International Review Naomi C. Hamm0Amani F Hamad1Elizabeth Wall-Wieler2Leslie L Roos3Oleguer Plana-Ripoll 4Lisa M Lix5Department of Community Health Sciences, University of Manitoba, Winnipeg, MB, CANADA, R3E 0W3Department of Community Health Sciences, University of Manitoba, Winnipeg, MB, CANADA, R3E 0W3Department of Community Health Sciences, University of Manitoba, Winnipeg, MB, CANADA, R3E 0W3; Manitoba Centre for Health Policy, University of Manitoba, Winnipeg, MB, CANADA, R3E 3P5Department of Community Health Sciences, University of Manitoba, Winnipeg, MB, CANADA, R3E 0W3; Manitoba Centre for Health Policy, University of Manitoba, Winnipeg, MB, CANADA, R3E 3P5National Centre for Register-based Research, Department of Economics and Business Economics, Aarhus University, Aarhus, DENMARK, 8210Department of Community Health Sciences, University of Manitoba, Winnipeg, MB, CANADA, R3E 0W3 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. https://ijpds.org/article/view/1686family health historymultigenerationalobservational researchpopulation registriesrecord linkageroutinely-collected data
collection DOAJ
language English
format Article
sources DOAJ
author Naomi C. Hamm
Amani F Hamad
Elizabeth Wall-Wieler
Leslie L Roos
Oleguer Plana-Ripoll
Lisa M Lix
spellingShingle Naomi C. Hamm
Amani F Hamad
Elizabeth Wall-Wieler
Leslie L Roos
Oleguer Plana-Ripoll
Lisa M Lix
Multigenerational Health Research using Population-Based Linked Databases: An International Review
International Journal of Population Data Science
family health history
multigenerational
observational research
population registries
record linkage
routinely-collected data
author_facet Naomi C. Hamm
Amani F Hamad
Elizabeth Wall-Wieler
Leslie L Roos
Oleguer Plana-Ripoll
Lisa M Lix
author_sort Naomi C. Hamm
title Multigenerational Health Research using Population-Based Linked Databases: An International Review
title_short Multigenerational Health Research using Population-Based Linked Databases: An International Review
title_full Multigenerational Health Research using Population-Based Linked Databases: An International Review
title_fullStr Multigenerational Health Research using Population-Based Linked Databases: An International Review
title_full_unstemmed Multigenerational Health Research using Population-Based Linked Databases: An International Review
title_sort multigenerational health research using population-based linked databases: an international review
publisher Swansea University
series International Journal of Population Data Science
issn 2399-4908
publishDate 2021-10-01
description 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.
topic family health history
multigenerational
observational research
population registries
record linkage
routinely-collected data
url https://ijpds.org/article/view/1686
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