Data gaps and opportunities
Comprehensive, accurate and timely data are necessary for effective population health monitoring of endometriosis. The National Action Plan for endometriosis calls for improved data capture, use and linkage to improve understanding of the current state, impact, and burden of endometriosis in Australia (Department of Health 2018).
Gaps and limitations
The analysis in this report predominantly describes hospital and emergency department care for endometriosis, which likely reflects management of more severe symptoms. Information on the use of primary care, specialist care or pharmaceutical treatment would provide a more complete picture of endometriosis in Australia, but is limited by the absence of suitable data sources. Current gaps on the health of people living with endometriosis include:
- national, comparable and reportable data on primary health care activity and outcomes
- outcomes of endometriosis-related hospitalisations and emergency department presentations
- emergency department presentations due to endometriosis symptoms prior to receiving a diagnosis
- treatment pathways for people with endometriosis, including multiple hospitalisations or emergency department presentations
- information on some population groups, including First Nations people, people with disability, culturally and linguistically diverse populations, refugees and LGBTIQA+ populations.
Data linkage opportunities
Where data are available, analysis can be limited by the inability to identify endometriosis as the purpose of treatment. Linked data presents an opportunity for improved understanding of the experiences and treatment patterns for people with endometriosis. Examples of linked data sources which could be explored for endometriosis include:
- National Integrated Health System Information: NIHSI is a major national linked health data asset comprising data on admitted patient care services, emergency department services, outpatient services, Medicare Benefits Schedule (MBS), Pharmaceutical Benefits Scheme (PBS), Repatriation Pharmaceutical Benefits Scheme (RPBS), Residential Aged Care services, National Death Index (NDI) and the Australian Immunisation Register (AIR). Analysis could describe patient pathways and health service use in the years preceding and succeeding a diagnosis of endometriosis. This analysis could also explore the use of MBS services and the medicines provided under the PBS for the treatment of endometriosis.
- Multi-Agency Data Integration Project: MADIP is a secure data asset combining information on health, education, government payments, income and taxation, employment, and population demographics (including the Census) over time. Analysis could explore the impact of endometriosis beyond a person’s health, such as reduced participation in school, work and sporting activities.
Investment in endometriosis research
The National Health and Medical Research Council has expended $18.9 million towards research relevant to endometriosis between 2000 and 2022.
From its inception in 2015 to 31 May 2023, the Medical Research Future Fund has invested $19.11 million in 11 grants with a focus on endometriosis research. Examples include:
- $3.93 million to the University of Melbourne for improving diagnosis and treatment of endometriosis
- $1.94 million to the University of New South Wales for The Australian Endometriosis Clinicians Collaborative (AECC)
- $1.47 million to Deakin University for CoDeEndo: Co-Designing, Evaluating, and Implementing Supportive Care for Endometriosis.
Department of Health (2018a) National Action Plan for Endometriosis, Department of Health, Australian Government, accessed 15 July 2022.