Population Data Centre Profiles: Centre for Data Linkage.
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ABSTRACT:
SUBMITTER: Boyd JH
PROVIDER: S-EPMC7473267 | biostudies-literature | 2020 Mar
REPOSITORIES: biostudies-literature
Publications
Population Data Centre Profiles: Centre for Data Linkage.
Boyd J H JH Randall S M SM Brown A P AP Maller M M Botes D D Gillies M M Ferrante A A
International journal of population data science 20200311 2
The Centre for Data Linkage (CDL) was established at Curtin University, Western Australia, to develop infrastructure to enable cross-jurisdictional record linkage in Australia. The CDL's operating model makes use of the 'separation principle', with content data typically provided to researchers directly by the data custodian; jurisdictional linkage where available are used within the linkage process. Along with conducting record linkage, the team has also invested in establishing a research prog ...[more]
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Project description:IntroductionGlobally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage.ObjectivesCentering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data.MethodsDuring the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data.ResultsThe SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states.ConclusionEach of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations.
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Project description:ImportanceApproximately 1 in 10 children worldwide are born to consanguineous parents. The literature on consanguinity and mental health of progeny is scarce despite the fact that many of the factors associated with consanguineous unions are also associated with mental health.ObjectiveTo investigate if children of consanguineous parents are at increased risk of common mood disorders or psychoses.Design, setting, and participantsThis investigation was a retrospective population-wide cohort study of all individuals born in Northern Ireland between January 1, 1971, and December 31, 1986, derived from the Child Health System data set and linked to nationwide administrative data sources on prescription medication and death records. Data from the Child Health System data set identified all 447 452 births delivered to mothers residing in Northern Ireland between 1971 and 1986. The final data set comprised 363 960 individuals, alive and residing in Northern Ireland in 2014, with full data on all variables. The dates of analysis were June 1 to October 31, 2017.Main outcomes and measuresDegree of parental consanguinity was assessed from questions asked of the parents during routine health visitor house calls within 2 weeks of the child's birth. Potential mental ill health was estimated by receipt of psychotropic medication in 2010 to 2014. Ever or never use was used for the main analysis, with sensitivity analyses using a cutoff of at least 3 months' prescriptions. Receipt of antidepressant or anxiolytic medications was used as a proxy for common mood disorders, whereas receipt of antipsychotic medications was used as a proxy indicator of psychoses.ResultsOf the 363 960 individuals (52.5% [191 102] male), 609 (0.2%) were born to consanguineous parents. After full adjustment for factors known to be associated with poor mental health, multilevel logistic regression models found that children of first-cousin consanguineous parents were more than 3 times as likely to be in receipt of antidepressant or anxiolytic medications (odds ratio, 3.01; 95% CI, 1.24-7.31) and more than twice as likely to be in receipt of antipsychotic medication (odds ratio, 2.13; 95% CI, 1.29-3.51) compared with children of nonrelated parents.Conclusions and relevanceA child of consanguineous parents is at increased risk of common mood disorders and psychoses.
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