EPLC welcomes AIHW’s framework for miscarriage data collection

The work was a core component of the $9.5 million package requested by the EPLC and funded in the government’s 2024/25 Federal Budget. The document is now open for public consultation.

The Early Pregnancy Loss Coalition welcomes the release of the Australian Institute of Health and Welfare’s Sexual and reproductive health monitoring framework and data strategy .

It was informed by the National Miscarriage Expert Advisory Group, on which three EPLC board members sit; EPLC Executive Director and Co-Founder Isabelle Oderberg (author of Hard to Bear: Investigating the science and silence of miscarriage), EPLC Co-Founder and Non-Executive Director Dr Jade Bilardi (Miscarriage Australia) and EPLC Co-Founder and Non-Executive Director, Associate Professor Melanie Keep (University of Sydney).

Based on the knowledge gaps identified, AIHW outlined five priority areas for data development:

1. A national data set on pregnancy loss prevalence disaggregated by type, gestational age, recurrence, and demographic characteristics (including priority populations and geography)

2. Monitor the availability of pregnancy loss services, including the number and distribution of early pregnancy assessment services, data on care pathways and pregnancy loss management, and identify and monitor health professional knowledge and practices, including training in trauma-informed and culturally safe care

3. Data around mental health outcomes following pregnancy loss including referrals to, availability and uptake of mental health support and grief counselling

4. Measurement and monitoring of pregnancy loss health literacy, disaggregated, and accessibility of accurate and appropriate (culturally, linguistically, practically) information.

5. Data collection to allow counts of procedures for pregnancy loss as distinct from termination of pregnancy.

The AIHW recommends the establishment of a national register for completion by healthcare providers across different sectors to, “allow greater coverage of pregnancy loss before 20 weeks’ gestation (including miscarriage) than what is currently available (limited to hospital datasets)”.

“We thank the Federal Government for funding this crucial work and to the amazing team at the AIHW who made it a reality,” said EPLC Executive Director Isabelle Oderberg.

“Australia does not collect any data on miscarriage, despite it affecting up to 150,000 families across the country. Without quality data around early pregnancy loss, we simply cannot hope to have health policy that’s fit for purpose.

“Thanks to this work, we have a pathway forward, to ensure that we have true visibility over early pregnancy loss across the country, including within marginalised groups, where patients are more likely to experience adverse pregnancy outcomes.”

For more information on the public consultation, which is open until Sunday, November 2, please visit the AIHW website.

For any queries please email info@eplc.au.