Natalia Boven
I am an emerging researcher at Te Huinga Hāpai Tāngata/COMPASS Research Centre at Waipapa Taumata Rau/the University of Auckland. My research uses linked administrative, Census and survey data accessed through the Integrated Data Infrastructure, and spans wide areas including social stratification, migration and health. I have a particular research interest in access to health and social support services for people living with complex chronic illnesses.
Session
The term complex chronic illnesses refers to a collection of often overlapping multi-system illnesses that cause substantial levels of disability 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 syndrome (POTS). Despite being relatively common, these conditions are underdiagnosed, undertreated and understudied, and service provision is fragmented. It is likely issues accessing care are exacerbated for Māori and Pacific Peoples and people with low socioeconomic position.
I will discuss some of the challenges of using administrative data to study complex chronic illnesses, focussing on recent research with the Integrated Data Infrastructure (IDI), a de-identified linked research database of administrative, Census and survey data. Case studies will include projects i) examining access to publicly funded dietetics and gastroenterology services for EDS and ii) testing potential links between childhood health conditions and ME/CFS and Long COVID risk. These studies will be contrasted with research using the IDI to describe the epidemiology of multiple sclerosis, an autoimmune condition with substantial overlaps with complex chronic illnesses. 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.