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UID:pretalx-2026-FMUWWK@conferences.acspri.org.au
DTSTART;TZID=AEST:20261125T153000
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DESCRIPTION:The term complex chronic illnesses refers to a collection of of
 ten overlapping multi-system illnesses that cause substantial levels of di
 sability and which disproportionately impact women. Some examples include 
 myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)\, Long COVID\,
  Ehlers-Danlos Syndromes (EDS) and postural orthostatic tachycardia syndro
 me (POTS). Despite being relatively common\, these conditions are underdia
 gnosed\, undertreated and understudied\, and service provision is fragment
 ed. It is likely issues accessing care are exacerbated for Māori and Paci
 fic Peoples and people with low socioeconomic position.\n\nI will discuss 
 some of the challenges of using administrative data to study complex chron
 ic illnesses\, focussing on recent research with the Integrated Data Infra
 structure (IDI)\, a de-identified linked research database of administrati
 ve\, Census and survey data. Case studies will include projects i) examini
 ng access to publicly funded dietetics and gastroenterology services for E
 DS and ii) testing potential links between childhood health conditions and
  ME/CFS and Long COVID risk. These studies will be contrasted with researc
 h using the IDI to describe the epidemiology of multiple sclerosis\, an au
 toimmune condition with substantial overlaps with complex chronic illnesse
 s. I will discuss how the poor visibility of complex chronic illnesses in 
 administrative data both reflects and perpetuates their neglect in health\
 , disability and social welfare services.
DTSTAMP:20261013T080118Z
LOCATION:Sutherland Room
SUMMARY:Using linked administrative data to study complex chronic illnesses
  - Natalia Boven
URL:https://conferences.acspri.org.au/2026/talk/FMUWWK/
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