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Cohort Profile
Cohort profile: understanding health service system needs for people with intellectual disability using linked data in New South Wales, Australia
Simone Reppermund, Preeyaporn Srasuebkul, Claire M. Vajdic, Sallie-Anne Pearson, Rachael E. Moorin, Julian N. Trollor
Epidemiol Health. 2024;46:e2024054.   Published online June 12, 2024
DOI: https://doi.org/10.4178/epih.e2024054
  • 2,689 View
  • 134 Download
AbstractAbstract AbstractSummary PDF
Abstract
This cohort profile describes one of the largest linked datasets in the world concerning the health of people with intellectual disability. The cohort comprises a retrospective group of 100,089 individuals with intellectual disability who received disability and/or health services in New South Wales, Australia. Of these participants, 34% were female, with a median age at cohort entry of 3 years (interquartile range, 0-19). A separate comparator cohort included 455,677 individuals, matched by 5-year age group, sex, and residential postcode at a 5:1 ratio. Initial results indicate that between 2001 and 2018, people with intellectual disability experienced more than double the rate of hospitalisations (538 vs. 235 per 1,000 person-years), as well as markedly higher rates of emergency department presentations (707 vs. 379 per 1,000 person-years) and use of ambulatory mental health services (1,012 vs. 157 per 1,000 person-years), relative to the comparator cohort. The largest disparities in hospital admissions were for mental disorders, dialysis, and diseases of the nervous system and sense organs. Furthermore, individuals with intellectual disability had more than double the rate of dispensed medications found in the comparator cohort. Of these medications, 46.6% were for the treatment of nervous system conditions, as opposed to 24.7% for the comparator cohort. The mean±standard deviation age at death was 52±19 years for people with intellectual disability and 64±22 years for the comparator participants.
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Key Message
This cohort study of individuals with intellectual disability is one of the largest internationally looking at health profiles and health service use. The goal is to improve the health and well-being of individuals with intellectual disability by informing the development of services, variations in prescribing practices, and access to preventative health services.
Review Paper
Population data science: advancing the safe use of population data for public benefit
Kerina Helen Jones, David Vincent Ford
Epidemiol Health. 2018;40:e2018061.   Published online December 25, 2018
DOI: https://doi.org/10.4178/epih.e2018061
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  • 156 Download
  • 8 Web of Science
  • 9 Crossref
AbstractAbstract PDF
Abstract
The value of using population data to answer important questions for individual and societal benefit has never been greater. Governments and research funders world-wide are recognizing this potential and making major investments in data-intensive initiatives. However, there are challenges to overcome so that safe, socially-acceptable data sharing can be achieved. This paper outlines the field of population data science, the International Population Data Linkage Network (IPDLN), and their roles in advancing data-intensive research. We provide an overview of core concepts and major challenges for data-intensive research, with a particular focus on ethical, legal, and societal implications (ELSI). Using international case studies, we show how challenges can be addressed and lessons learned in advancing the safe, socially-acceptable use of population data for public benefit. Based on the case studies, we discuss the common ELSI principles in operation, we illustrate examples of a data scrutiny panel and a consumer panel, and we propose a set of ELSI-based recommendations to inform new and developing data-intensive initiatives.We conclude that although there are many ELSI issues to be overcome, there has never been a better time or more potential to leverage the benefits of population data for public benefit. A variety of initiatives, with different operating models, have pioneered the way in addressing many challenges. However, the work is not static, as the ELSI environment is constantly evolving, thus requiring continual mutual learning and improvement via the IPDLN and beyond.
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Citations

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  • ‘What about the dads?’ Linking fathers and children in administrative data: A systematic scoping review
    Irina Lut, Katie Harron, Pia Hardelid, Margaret O’Brien, Jenny Woodman
    Big Data & Society.2022;[Epub]     CrossRef
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    Michael Boniface, Laura Carmichael, Wendy Hall, Brian Pickering, Sophie Stalla-Bourdillon, Steve Taylor
    Data & Policy.2022;[Epub]     CrossRef
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    Data & Policy.2021;[Epub]     CrossRef
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    Environmental Research.2021; 197: 111019.     CrossRef
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    Jude O. Igumbor, Edna N. Bosire, Marta Vicente-Crespo, Ehimario U. Igumbor, Uthman A. Olalekan, Tobias F. Chirwa, Sam M. Kinyanjui, Catherine Kyobutungi, Sharon Fonn
    Wellcome Open Research.2021; 6: 214.     CrossRef
  • The road to hell is paved with good intentions: the experience of applying for national data for linkage and suggestions for improvement
    Julie A Taylor, Sonya Crowe, Ferran Espuny Pujol, Rodney C Franklin, Richard G Feltbower, Lee J Norman, James Doidge, Doug William Gould, Christina Pagel
    BMJ Open.2021; 11(8): e047575.     CrossRef
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    Robyn L. Marsh, Celestine Aho, Jemima Beissbarth, Seweryn Bialasiewicz, Michael Binks, Anders Cervin, Lea-Ann S. Kirkham, Katherine P. Lemon, Mary P.E. Slack, Heidi C. Smith-Vaughan
    International Journal of Pediatric Otorhinolaryngology.2020; 130: 109836.     CrossRef
  • Age-Dependent and Seasonal Changes in Menstrual Cycle Length and Body Temperature Based on Big Data
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    Obstetrics & Gynecology.2020; 136(4): 666.     CrossRef
  • Public Views on Models for Accessing Genomic and Health Data for Research: Mixed Methods Study
    Kerina H Jones, Helen Daniels, Emma Squires, David V Ford
    Journal of Medical Internet Research.2019; 21(8): e14384.     CrossRef

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