ABS Census submission

Below is a submission created by the EPLC to the consultation on data collection in the Australian National Census from 2026 onwards run by the Australian Bureau of statistics (ABS).

INTRODUCTION

This submission requests the ABS collects and produces statistics on pregnancy loss in Australia. Specifically, the number of losses before 20 weeks’ gestation (early pregnancy loss). Given that the Census already collects information about pregnancies that end after 20 weeks, this could be adjusted to specify whether a pregnancy ended before or after 20 weeks of gestation, giving some transparency to miscarriage data, as well as stillbirth data. These two categories are requested as they would be consistent with how pregnancy loss is categorised in our healthcare systems. 

It is believed that miscarriage currently affects up to 150,000 families, or one family every five minutes. 

• To help us assess your submission, tell us why it is important that the ABS collect and produce this information, including how you would use the data. 

The addition of questions about early pregnancy loss to the ABS Census fulfills all six assessment criteria. 

1. The topic is of national importance

The National Women’s Health Strategy 2020-2030 identifies five priority areas that, if addressed, will improve the health outcomes for women and girls in  Australia. The first priority area is maternal, sexual and reproductive health and within that the strategy commits to “Continu[ing] to support women’s  health services at a national, state and local level” and “Support[ing] awareness and support for miscarriage.” To successfully achieve these actions,  miscarriage data is needed. Understanding how many miscarriages occur nationally and in specific geographical areas will enable health service providers  to prioritise, design and implement support resources and provide support to families. This is particularly relevant for women who experience  miscarriage in rural, regional or remote areas of Australia and for enacting the vision and goals around healthcare access and quality described in the  National Strategic Framework for Rural and Remote Health. 

Miscarriage data is not collected by any Australian data authority. It is not collected by the Australian Institute of Health and Welfare, the Australian  Bureau of Statistics or any other. There are loose indicators, as such medicare coding, but these are obfuscated by abortion statistics and other  challenges, such as the barriers posed by the clinical definition of miscarriage. 

According to the World Health Organization Deputy Director Zsuzsanna Jakab, the ‘backbone’ of public health and strong decision-making is high-quality  health information. We cannot advocate for public health policy without this data. 

Currently, very little pregnancy loss related funding is directed specifically toward miscarriage research and support service provision. Data about early  pregnancy loss can also be used to inform funding decisions, particularly around Investing in Women grants or previous Stillbirth and Miscarriage  Support grants. This funding aims at improving the services provided to women and their partners, but without concrete data on the number of  miscarriages, it is challenging to distribute funding in a way that is equitable or commensurate to the number of people affected by the experience. In  addition, there is limited research funding available for early pregnancy loss. Data on the number of miscarriages can enable researchers to understand  the context of their samples and develop a more comprehensive understanding of miscarriage and related support needs. 

2. There is a need for data at the national level, and either the local level or for small population groups.

Collecting miscarriage data must be a priority worldwide, as identified by renowned researchers including Professor Sioban Quenby in the miscarriage series in the Lancet, which ran in 2021. Without this information, we cannot know the toll of miscarriage on the Australian economy, nor develop informed health policy around it. For instance, in the UK, the cost of miscarriage to the economy was put at £471 million per year. 

Equally, we know that people from under-represented groups face more significant disadvantage from the policy vacuum than others. People who identify as Aboriginal and Torres Strait Islander, those with disability, those from lower income groups, people in regional or rural areas, those whose first language isn’t English and people who are gender diverse or identify as LGBTIQ+. 

With collection of this data at a local level and an ability to overlay that data with identifiers of key demographics as named above, we could have the potential for the first time of getting full visibility over how this problem is affecting marginalised groups. 

It would also give us an ability to see whether the problem is growing from census to census, with many medical professionals believing that it is.

3. There is likely to be a continuing need for data on the topic following the Census. 

Take-up rates of artificial reproductive technologies such as IVF are rising. Rounds of IVF taken in Australia are rising by 2 to 3 per cent annually. Miscarriage rates are also believed to be increasing, though this is based primarily on anecdotal evidence given the lack of data. 

Fertility worldwide is decreasing. We must be tracking this data year-on-year in order to have a visible pattern of how this is evolving in the Australian context. Without ongoing monitoring, we are operating completely in the dark, unable to compare our trends to comparable international data sets. 

4. There are no other suitable alternative data sources or solutions that could meet the topic need. 

This data is not collected anywhere in Australia, as stated above. The Australian Institute of Health and Welfare do not collect it, nor does the Australian Bureau of Statistics. 

Medicare numbers are obfuscated by the confusion of miscarriage and elective abortion, due to the fact that they both use similar surgical procedures for treatment and care for follow up. 

The clinical definition of miscarriage means many are not captured in the clinical setting. For example, many patients in the public system do not have their first scan until they are 18 weeks pregnant or later, if at all. This means miscarriages that have already taken place are not identifiable according to the clinical definition. 

For this reason, as well as the availability of high sensitivity home pregnancy tests, the EPLC advocates for a self-reporting system. This is why the Census would be the most appropriate mechanism for this self-reporting to take place. 

5. Data on the topic can be collected efficiently. 

Data on this topic can be collected efficiently and without the need for extensive processing or coding. There was considerable distress caused by a question in the 2021 Census asking ‘how many children have you given birth to?’ which many people, especially those who had experienced pregnancy loss, found highly offensive and insensitive. One of the most commonly cited issues those affected by miscarriage report is a lack of acknowledgement of their loss. 

In addition to providing reliable data on pregnancy loss in Australia, the addition of these questions has social value. They provide validation to parents who grieve the loss of a child that up until recently was not recognised as a child/loss in legislation (and has not been recognised in the Census to date), and provide public acknowledgement of the significance of pregnancy loss. 

While the wording would need to be tested, the question may be as simple as: 

Since the last Census in 2021, have you experienced any of the following types of pregnancy loss? 

As the pregnant person Number of 

Miscarriage (under 20 weeks pregnant) 

Stillbirth (over 20 weeks pregnant) 

As the pregnant persons partner Number of 

Miscarriage (under 20 weeks gestation) 

Stillbirth (over 20 weeks gestation) 

6. A representative of the household would be willing and able to answer questions on the topic for each member of the household. 

This is an extension/revision of the Census question about stillbirth (pregnancy loss from 20 weeks’ gestation). As such, we believe that a representative of the household would be willing and able to answer the question on the topic for each member of the household. 

**Please note: we also have this submission available in a Word document with footnote references attached to this submission. For what purpose(s) will you use the data? (Select all that apply)

Resource allocation for programs and policies, Planning, development, monitoring and evaluation related to programs, policies and service delivery, Research, Journalism/media 

What is the smallest area or geography required to effectively use this data? (Select one) 

Statistical Area Level 2 (suburb or locality) 

Is there other information you would like the ABS to collect and produce statistics on? 

No 

Would you like to tell us anything else about your submission? 

The information will be used to inform and drive policy development and funding decisions to better support those affected by miscarriage in Australia. The data will inform the development, implementation and evaluation of evidence-based support for families following early pregnancy loss and allow for the delivery of optimal support mechanisms and targeted research to maximise potential public health benefits. Having data on the number of miscarriage losses, and how these differ between communities and regions will allow researchers and service providers to design and deliver support and services tailored and relevant to the needs of the community and population group.

Authors: On behalf of the Early Pregnancy Loss Coalition, Senior Research Fellow Dr Jade Bilardi and Author and Journalist Isabelle Oderberg.