From feminist roots:
the Australian Longitudinal Study on Women's Health
The women behind ALSWH share their thoughts on the study’s roots in the women’s health movement and the advances made in over 25 years of women’s health research.
The Australian Longitudinal Study on Women’s Health (ALSWH) has a long history of challenging stereotypes and highlighting inequity in women’s health – over 25 years and counting.
What is ALSWH?
The Australian Government Department of Health and Aged Care funds ALSWH. Our role is to listen to women’s concerns, understand the factors that shape their experiences, and provide an evidence base for Australia’s policymakers.
ALSWH is the largest project of its kind ever conducted in Australia. Over 57,000 women have participated in regular surveys since the study began. Two teams, from the University of Newcastle and The University of Queensland, share the herculean task of developing and distributing the ALSWH surveys and managing an entire quarter century’s worth of data.
The study investigates the factors that impact women’s health and wellbeing and their use of health services across their lifespans. To do this, ALSWH follows four participant groups (called cohorts). Researchers can look within a cohort to see what impacts health or compare the cohorts to look for generational differences and make predictions. The age range of each cohort was chosen to capture women’s experiences as they entered different life stages.
Older age – 12,432 women, born 1921-26, joined the study in 1996. Even then, at age 70-75, the 1921-26 cohort were breaking stereotypes of ageing and showing us how to age well. ALSWH is now one of the largest and longest-running studies of centenarians – we have sent out over fifty 100th birthday cards!
Mid-age – Aged 45-50 in 1996, the 13,714 women of the 1946-51 cohort have navigated menopause, relationships, changing family responsibilities and retirement. They are now entering their 70s.
Early adulthood – 14,247 young women born between 1973 and 1978, then aged 18-23, joined the study in 1996. They have navigated leaving home, employment, study, work, relationships and family roles. They are now in their forties and about to enter perimenopause. In 2013, ALSWH added a new cohort of 18-23-year-old women. The 17,011 women, this time born 1989-95, are now in their late twenties and thirties.
How it started
From feminist roots
The Australian Longitudinal Study on Women’s Health recruited its first participants in 1996. However, the study’s roots go much further back; to the activists and ideologies of the 1970s- and 80s-women’s health movement and a group of (mostly) women who saw the chance to make a difference.
Chief Investigator (ALSWH 1994 Project Tender)
ALSWH Founding Director (1996-2013)
Professor Annette Dobson is the founding director of ALSWH. Although Annette stepped down as director in 2013, she remains an integral member of the study staff.
Annette is a renowned biostatistician. Her statistics textbook, An Introduction to Generalized Linear Models, was first published in 1990 and is now in its fourth edition. In 2010 she was appointed a Member of the Order of Australia (AM) in recognition of her service to public health and biostatistics, particularly through the collection and analysis of data relating to cardiovascular disease and women's and veterans' health.
Annette completed a Bachelor of Science at the University of Adelaide. She earned a Masters and PhD at James Cook University before joining the University of Newcastle in 1977.
By 1994, when the tender process began, Annette was already a well-regarded Professor of Biostatistics. She had extensive experience running a large epidemiological study – the World Health Organisation's MONICA project (to MONItor trends and determinants of CArdiovascular disease).
Chief Investigator (ALSWH 1994 Project Tender)
University of Newcastle ALSWH Director (2006-2022)
Emeritus Professor Julie Byles was the University of Newcastle ALSWH Director from 2006-2022. In 2022, Julie was also appointed an Officer of the Order of Australia (AO) for her service to medical research, gerontology (the study of ageing), and professional scientific organisations. Her research on ageing investigates how health services, preventative activities and treatments can maintain older people’s quality of life.
In the early 1990s, when ALSWH began, Julie was a general practitioner (GP) and a lecturer in Clinical Epidemiology at the University of Newcastle.
Associate Investigator (ALSWH 1994 Project Tender)
University of Newcastle ALSWH Project Manager (1996-1999)
Professor Wendy Brown was a driving force in the establishment of the study. Wendy was the ALSWH University of Newcastle Project Manager until 1999. In 2000, she joined the UQ School of Human Movement Studies as the first professor in physical activity and health.
Associate Investigator (ALSWH 1994 Project Tender)
University of Newcastle ALSWH Project Manager (2000-2003)
The University of Queensland ALSWH Project Coordinator UQ (2003-2005)
Emeritus Professor Christina Lee has been heavily involved with the study since its start. Christina is a public health psychologist who has never been afraid to challenge conventional thinking. Her research focuses on issues of gender, health, and government policy.
Christina was an Associate Investigator on the original project proposal in 1994 and a Chief Investigator on later funding rounds. She worked at the University of Newcastle as the ALSWH Project Manager from 2000-2003. Then, she moved to the University of Queensland in 2003 and continued as the ALSWH Project Coordinator until 2005. Christina continued her involvement with ALSWH as an Investigator, a steering committee member, and a collaborative investigator on numerous projects using ALSWH data.
This is their story...
– 1970s and 1980s –
The women’s health movement
Fifty years ago, the emerging women’s health movement shocked and scandalised Australia with its outspoken focus on taboo topics like abortion, contraception, and sexual violence.
The women’s health movement was concerned with how women’s experiences and social inequality contributed to poor health. They were critical of the traditional medical system that perpetuated inequality, offered women little control over their bodies, didn’t listen to their needs, and failed to provide services of critical importance to women.
The grassroots movement brought together women from all walks of life. They marched, protested, and lobbied tirelessly to put women’s health policy on the agenda. Together, they set up women’s health centres and refuges for victims of domestic violence.
International Women's Year
To celebrate International Women’s Year in 1975, the Australian Government Department of Health held a conference in Brisbane. The conference, called Women’s Health in a Changing Society, aimed to:
- raise awareness of women’s health issues,
- determine the adequacy of approaches to healthcare, and
- determine future action.
Prime Minister Gough Whitlam addressed the conference, saying:
“To understand, challenge and change attitudes toward women, their health and their bodies ... all those concerned must listen and learn how women perceive the world, must understand what forces shape their experiences. . . . Good health care for women must be based on adequate and sensitive research into causes and methods of treatment but ultimately it can only come from a correct understanding of how women feel about their bodies and a correct understanding of the lives they live.”
Political goodwill for the women’s health movement ebbed and flowed. It would take until the end of the decade to see progress on the conference’s recommendation for a women’s health policy.
– 1976 to 1985 –
The UN Decade for Women
The United Nations declared 1976 – 1985 the Decade for Women. The United Nations held international conferences in Mexico City in 1975, Copenhagen in 1980, and Nairobi in 1985. Discussions focused on issues adversely impacting women, like pay equity, land rights, and gendered violence. In all these discussions, employment, health, and education were recurring themes.
At home in Australia, the decade saw significant advances for women.
– 1975 –
The late Senator (now Dame) Margaret Guilfoyle was the first woman to be given a federal cabinet portfolio.
– 1978 –
The first Reclaim the Night rallies were held in Sydney and Perth.
– 1983 –
Australia signed the United Nations Convention on the Elimination of All Forms of Discrimination Against Women.
– 1984 –
The Federal Sex Discrimination Act was introduced, making gender-based discrimination and sexual harassment illegal.
– 1985 –
UN Conference - Nairobi
Australia endorsed the conference document 'Forward Looking Strategies', which set out a plan of action for women's progress through to the year 2000.
– 1985 –
The Second National Conference on Women’s Health
In September 1985, over 700 women gathered in Adelaide for the Second National Conference on Women's Health. The conference resolved that a national policy on women's health should be developed based on a social view of health.
The National Agenda for Women
In November 1985, the Hawke Government announced its National Agenda for Women, which promised to give women a choice, a say, and a fair go.
The government committed to developing a national women’s health policy as part of the agenda. The announcement recognised the resolution from the Second National Women’s Health Conference. It also met the government’s commitments to World Health Organisation goals and the UN’s Nairobi conference documents.
– 1986 to 1989 –
The National Consultation on Women's Health
The policy development process was extensive; the government consulted over a million women from diverse backgrounds on their health needs and priorities.
According to founding Director Professor Annette Dobson, the national consultation on women’s health received a clear message from participants.
“They wanted to ensure that decision-makers were aware of the realities of women’s lives. The perception was that health policies were written by men, for men. The male-dominated healthcare system of the time wasn’t meeting the needs of women.”
– 1989 –
The First National Women's Health Policy (in the world)
When the National Women's Health Policy was launched in 1989 by Prime Minister Bob Hawke, Australia became the only country in the world with a comprehensive women's health policy. Key issues identified in the policy were:
- Reproductive health and sexuality
- The health of ageing women
- Emotional and mental health
- Violence against women
- Occupational health and safety
- The health needs of women as carers
- The health effects of sex-role stereotyping on women
For Emeritus Professor Julie Byles, a founding member of the study team and former ALSWH Director at the University of Newcastle, the policy's social approach to women's health was critical to changing the system to meet women's needs.
"The policy placed health within a social context that went beyond the traditional medical model of health care, which focused on anatomy and physiology, disease and treatment. It recognised that health was more than the absence of disease. Health is a complete state of mental and physical wellbeing.
The policy also recognised that many of the causes and solutions to women's health problems lay in their social circumstances and context, rather than in a pill or an operation."
– 1993 –
Funding for women's health research
Policymakers need timely, accurate data and research to make informed decisions. The National Women's Health Policy listed research and data collection as one of five priority areas.
Professor Wendy Brown, a founding member of the ALSWH team, recalls the mood at the time.
"Right at the very start, when the tender was announced – some people questioned why we needed to focus on women, as they live longer than men."
Behind the scenes, feminist bureaucrats (called femocrats) had organised the national consultation and lobbied to get the new National Women's Health Policy through government. Next, they focused on lobbying for budget approval for programs identified in the policy.
It took until 1993. Prime Minister Paul Keating announced funding for a longitudinal study on women’s health and submissions were requested from groups interested in running the project.
Emeritus Professor Christina Lee has a long association with the study as a founding Investigator, Manager, and later Project Coordinator. She recalls:
"The initial funding and call for tenders was an initiative of the senior women in the Keating government, particularly Carmen Lawrence, who was Australian Minister for Health at the time. It was specifically designed to:
- address the lack of good-quality information on women's health needs
- consider health in its broadest social context; and
- consider health disciplines other than medicine – most of which are primarily run and staffed by women.
So, the funders viewed it as feminist. And so did the research team, who were and are committed to a social approach to health and to inclusivity among researchers."
Professor Annette Dobson clarifies:
"The ALSWH team were not involved in the development of the policy. The ALSWH team responded to a tender opportunity – led by feminist academics Lois Bryson from the University of Newcastle and Lenore Manderson from the University of Queensland.
Many of those who did work on the policy were certainly feminists, including a fairly powerful group of femocrats at Federal and State levels and leading feminist politicians.
Dr Carmen Lawrence, the Labor Minister for Health in 1994 to 1996, was a strong supporter of the study. And then, in the early 2000s, when the liberals were in power, we had support from Dr Kay Patterson, the Minister for Health and Ageing. Both of them had been PhD psychologists before going into politics, so I think they saw the value in establishing and maintaining a longitudinal study on women’s health.”
The Hon. Dr Carmen Lawrence AO was the Labor Minister for Human Services and Health (1994-1996).
The Hon. Dr Kay Patterson AO was Liberal Minister for Health and Ageing (2001-2003), Minister Assisting the Prime Minister for the Status of Women (2003-2004), and Minister Assisting the Prime Minister for Women’s Issues from (2004-2006).
The winning proposal
– 1994 –
Putting the team together
Professor Wendy Brown recalls the excitement of assembling the team to bid for the project tender.
"I was the manager for women's health services in the Hunter Centre for Health Advancement. I saw the call for the study (in the weekend paper), and I thought it looked really interesting. I immediately called Lois Bryson, the University of Newcastle's Professor of Sociology. Loise was a staunch feminist whose expertise in sociology and social work was in stark contrast with my background in physiology and health promotion.
Lois thought a longitudinal study would be exciting and important. We sat in a coffee shop and drew a tree with roots and branches to map out which disciplines could inform the proposed study – like sociology, physiology, psychology, epidemiology – and which areas of women's health might be involved.
We knew the study would need expertise in statistics. I knew of Annette - the university's Professor of Statistics, but I had never actually met her. When I approached her, she was very enthusiastic, saying, 'Let's get a group together. Who do we need?'
Back at the Hunter Centre, in the office next door to me, was a young GP/researcher who had just completed her PhD in cervical screening. Her name was Julie Byles. Next door to her was a clinical psychology researcher, Margot Schofield, who was also interested in women's health.
"At this time, I was completing my PhD on promoting screening for cervical cancer. The Pap test, used for screening at that time, provided an effective means to detect early cancer and pre-cancer and to intervene to save women's lives. However, there were large inequities in testing. Much of the onus was on women to seek a test and doctors to provide them. There was reluctance on both sides. Research showed that women were often unaware, embarrassed and uncomfortable having the test. They forgot, and they didn't have time. Doctors were sometimes also embarrassed, unskilled, and didn't have time.
We significantly improved the uptake of Pap smears, and I estimate that many women's lives may have been saved. Subsequently, the Australian government introduced a cervical screening register to deal with forgetting and to follow up on abnormal cytology results.
This example shows how the system was not designed to meet women's health needs. Taking a step back, the problems of cervical screening were not just about having an uncomfortable physical examination; they were also about separating women's health from the broader context of women's lives. This is the background I bought to the study: knowing that medicine could save lives, but understanding that it could only do so if women were active and equal partners in their care, that they felt safe, and their overall needs and circumstances were being accounted for."
The Newcastle team proposed to study three cohorts of women of different ages for 20 years. This would allow researchers to compare the cohorts and investigate whether differences in women's health and service use were generational or related to their stage in life.
In July 1994, the founding team, initially based at the University of Newcastle, consisted of four Chief Investigators - Annette Dobson, Lois Bryson, Margot Schofield, and Julie Byles. Ten Associate Investigators were listed in the first Expression of Interest documents: Wendy Brown, Kerrie Glover, Robert Gibberd, Richard Heller, Julie Lowe, Justin Kenardy, Christina Lee, Irena Madjar, Rob Sanson-Fisher, and Carla Treloar.
By December of 1994, the team had grown to include two additional Principal Investigators from the University of Queensland; Lenore Manderson and Gail Williams along with Cindy Shannon, Ann Larson, Kelsey Hagarty, Maxine Whittaker, Peter Howard, and Judith Fitzpatrick as Associate Investigators.
Lenore and Gail headed additional substudies representing indigenous women and women from non-English speaking backgrounds.
The University of Newcastle Associate Investigators now included: Wendy Brown, Jo Gaha, Richard Heller, Justin Kenardy, Christina Lee, Julie Lowe, Irena Madjar, Sue Outram, Carla Treloar, and Deidre Wicks.
True to the diagram mapped out by Wendy and Lois, the group’s expertise expanded women’s health research from a narrow medical focus on reproductive issues to a broad social context. The founding team included biostatisticians, epidemiologists, psychologists, sociologists, behavioural science experts, exercise physiologists, doctors, nurses, and social workers.
Putting women in the lead
"Perhaps there was surprise when we submitted the tender that the principal investigators were all women. At that time, Annette and Lois were among the only women professors at the University of Newcastle. There were certainly some long debates. Lois and I thought it might be strategic to put the women up as the lead researchers. Others said we didn't have a track record (apart from Annette and Lois) and didn't stand a chance.
But here we are!"
The winning bid
The final proposal beat 26 other research groups vying for the project. Professor Annette Dobson recalls:
"We almost didn't make it. It was the day of the presentation, and our plane never left the runway at Newcastle. Luckily Gail Williams was coming from Brisbane and had a copy of the slides. The rest of us made it as far as Sydney and had to call in from a phone in our hotel."
How it's going
In it for the long haul:
the women behind ALSWH
In an environment where researchers survive by ‘following the funding’ from institution to institution, ALSWH is unique. It’s not just the longevity of the study that sets it apart but the dedication and tenure of its staff and leaders.
Teams at the University of Newcastle and the University of Queensland jointly manage the study. Together, they have collaboratively steered ALSWH through more than a quarter century of social and technological change.
What is it about ALSWH that inspires such dedication?
Chief Investigator (ALSWH 1994 Project Tender)
ALSWH Founding Director (1996-2013)
Professor Annette Dobson was brought in as a Chief Investigator on the project tender in 1994-5 and became the study’s founding director in 1996. Annette moved to the University of Queensland in Brisbane in 2000.
In 2013, Annette passed on the leadership baton to Professor Gita Mishra.
"Gita was a fairly senior researcher and was looking to come back to Australia; the University of Queensland stepped up to the mark and offered her a position.
“We worked in parallel for a couple of years before it became pretty clear I needed to have a proper succession plan.”
Annette works part-time these days but remains an integral member of the study staff at the University of Queensland.
The University of Newcastle ALSWH Statistician (1996-2000)
The University of Queensland ALSWH Professorial Research Fellow (2010-2013)
The University of Queensland ALSWH Director (2014-present)
Professor Gita Mishra has been the ALSWH Director at the University of Queensland since 2014. She is also the founding director of the Australian Women and Girls’ Health Research (AWaGHR) Centre in the School of Public Health.
Gita joined the University of Newcastle team in 1996 as the study's first research academic. She recalls the excitement of the early days and her first academic job.
“It was an amazing feeling being part of something like ALSWH from very early on. When I joined as the first postdoctoral researcher on the study, I had just completed a PhD in statistics – as in hardcore theory and mathematics – so I really was overjoyed to have the opportunity to use statistics in real-world research on women’s health.
After my interview in Sydney, I flew home to New Zealand and told my PhD supervisor I had just gotten a job at this new longitudinal study with Annette Dobson. Annette was very well regarded already in the statistics world. My supervisor just said, “You’ve made it!”.
Gita stayed with the study for five years before heading overseas. Her interest in women’s health research and the study never waned. She returned to Australia, and to ALSWH, in 2010.
“It was great to gain some experience and expand my expertise in the UK working on life course approaches to women’s health using British Birth Cohort - they already had decades of data! I also kept my links with ALSWH and continued to contribute on papers. So, it felt amazing to bring this experience back - but it also felt quite natural, as if I had never been fully ‘away’.”
Associate Investigator (ALSWH 1994 Project Tender)
University of Newcastle Project Manager (1996-1999)
Professor Wendy Brown was the ALSWH University of Newcastle Project Manager until 1999, when she moved to the University of Queensland. Wendy has kept a close association with the study ever since – as an ongoing Investigator, a member of the ALSWH Steering Committee, and co-author on ALSWH reports. Wendy currently acts as an ALSWH Project Liaison. In this role, she helps other researchers plan their analyses and correctly interpret ALSWH’s complex data.
Wendy’s research, which focuses on physical activity, weight and the prevention and management of chronic illness, has frequently drawn on ALSWH data over the years. She is heavily involved in policy development and is the lead author of Australia’s Guidelines for Physical Activity During Pregnancy (released in 2021) and the evidence review for the Australian Physical Activity Guidelines for adults.
Chief Investigator (1994)
University of Newcastle ALSWH Director (2006-2022)
Professor Julie Byles was one of ALSWH’s founding Chief Investigators and was ALSWH Director at the University of Newcastle from 2006-2022. Julie began her career as a clinical epidemiologist researching Pap smears and the issues had women accessing the tests. ALSWH inspired a new calling as a gerontologist.
“I read all the comments written by women in the 1921-26 cohort. About 7000 women had written on the back page of the survey. And they wrote a lot! One woman stapled 12 pages onto the questionnaire. I read all those comments, and it was totally captivating. I was convinced that these women held the secrets to ageing well.”
Julie retired in 2022, but she continues to support ALSWH’s collaborating researchers as a Project Liaison. Julie will continue to advocate for the wellbeing of ALSWH’s older women as the ALSWH Special Envoy for the 1921-26 and 1946-51 cohorts.
Associate Investigator (ALSWH 1994 Project Tender)
ALSWH University of Newcastle Project Manager (2000-2003)
ALSWH University of Queensland Project Coordinator (2003-2005)
Now retired, Emeritus Professor Christina Lee was an Associate Investigator on the original project proposal in 1994 and a Chief Investigator on later funding rounds. Christina worked at the University of Newcastle as the ALSWH Project Manager from 2000-2003. She moved to the University of Queensland in 2003 and continued as the ALSWH Project Coordinator until 2005.
Christina's close association with ALSWH continued despite her demanding new role at the University of Queensland as Head of the School of Psychology (2006-2010) and later as Associate Dean (Research) for the Faculty of Health and Behavioural Sciences (2014-2019). She continued to support the study as an Investigator, a member of the Steering Committee, a Project Liaison, and a collaborative investigator on numerous projects using ALSWH data. In 2016, when asked about her career, Christina said:
“I would say the highlight of my career is my ongoing role as chief investigator of the Australian Longitudinal Study on Women’s Health (ALSWH). I’ve been privileged to work with – and to have led – a team that is second-to-none, which has produced some of the most important sources of information underpinning women’s health policy and practice today.”
ALSWH PhD student (1999-2003)
ALSWH University of Newcastle Project Manager (2006-2008)
ALSWH University of Newcastle Deputy Director (2009-2022)
ALSWH University of Newcastle Director (2022-present)
Professor Deb Loxton is the ALSWH Director at the University of Newcastle. She is also Director of the Centre for Women's Health Research at the Hunter Medical Research Institute (HMRI), where ALSWH’s Newcastle team are based. HMRI is a partnership between the University of Newcastle and the Hunter New England Local Health District.
Deb’s connection to ALSWH spans more than 20 years. She was initially drawn to the study’s feminist philosophies and values.
“I was working as a research assistant to Margot Schofield, one of the original Chief Investigators. She asked me to review some items for the second survey of the 1946-51 cohort Survey 2. I was intrigued and excited to see such a large study about women, for women and led by women. In an environment where my undergraduate university department included only one female academic, the feminist philosophy of ALSWH was unique and compelling to me.
I completed my PhD using ALSWH data with Margot as my primary supervisor and with support from Wendy Brown and Christina Lee when they were project managers at the University of Newcastle”.
Deb’s research with ALSWH has focussed on the prevalence of abuse, the long-term health outcomes for women who have experienced abuse, and improving health outcomes for mothers and babies. She has been a passionate advocate for domestic violence policies to include recovery. The Australian Government’s National Plan to End Violence Against Women and Children 2022-2032 acknowledges this call. The plan references the long-term health impacts of violence and includes action items to support women’s long-term recovery.
“It is unusual for academics to stay in one place for twenty years. I stayed because of the value of research, the dedication of the team, and because the values of study reflect my own values in offering opportunities to women.
At the end of the day, it is understanding and promoting the wellbeing of women that keeps me here”.
ALSWH University of Queensland Senior Research Fellow (2006-2013)
ALSWH University of Queensland Deputy Director (2014-present)
Associate Professor Leigh Tooth joined ALSWH in 2006 and became the ALSWH University of Queensland Deputy Director in 2014. Like the study’s founding team members, Leigh brings a unique research perspective to the study. She completed her PhD in occupational therapy and now specialises in research on maternal and child health and women’s health, particularly the health impacts of women’s caregiving roles, health inequalities and the socio-economic determinants of health.
“I had the opportunity to work with Annette Dobson as a research fellow, and she introduced me to the ALSWH and the power of longitudinal studies. When an opportunity arose to join the study and be part of its management, I jumped at it and haven’t left!”
Why have I stayed? The people, the depth of the research data, and the satisfaction of contributing to real change in women’s health policy by engaging with government and other stakeholders."
ALSWH continues the way it started, by adding to the shared pool of knowledge on women’s health and highlighting the inequities in women’s health, and their use of healthcare services.
"The study as it stands now is orders of magnitude greater than the set of surveys that we ambitiously commenced in 1996. It is considered to be a national treasure."
What do we do with all this data?
The Australian Government Department of Health and Aged Care continues to fund the study as a research resource to advance our understanding of women's health issues. The study has now been running for nearly 30 years and involves over 57,000 women from all over Australia. It is a research resource like no other.
The study data is freely available. Over 1000 researchers around the world have used ALSWH data in their projects. They have published over 1000 papers in peer-reviewed journals. Each paper adds to our understanding of the complex factors influencing women's health and wellbeing.
Reflecting on almost three decades of data collection, research, and advocacy, the women behind ALSWH share their thoughts on how the study has highlighted inequities and under-represented areas of women’s health.
"We have been influential in the subsequent National Women's Health Policies/Strategies. We continuously advocate for women's health issues, referring – where possible- to evidence based on research (including our research).
That is how progress is made in public health – slow continuous work by many people. In contrast, policy development can happen in different ways due to political influence – the study has an imperative to maintain neutrality in that space."
Successive governments from both sides of politics have recognised the study's value as an evidence base for policy development. The Australian government continues its commitment to women's health through the National Women's Health Policy 2010 and the National Women's Health Strategy 2020-2030. Both drew heavily on evidence from the study and its participants.
Each year the ALSWH team produces a Major Report on a topic of interest to the Department of Health and Aged Care. The study team also makes regular submissions to state and federal government strategy development reviews and parliamentary inquiries. Over the years, we have produced over 50 commissioned reports for government agencies and peak bodies.
"Equity is a factor in many of the health behaviours and outcomes that the women report, from chronic disease to mental health to caregiving. The caregiving and reproductive reports, in particular, have shown entrenched equity issues – often from baseline – in the patterns of health behaviour and health service use of the women."
"Where are the under-represented areas of women's health? Well, for me, of course, it has been in the area of ageing. Ageing is a lifetime process, and the great beauty of ALSWH is that it follows women over time and across generations. Enrolling our oldest cohort at 70-75, we commenced at a point in the life course when many studies left off.
We learnt that our women were resilient and resourceful, even in the face of accumulating health needs, life events, and other adversity. We also identified vulnerabilities to abuse, falls, frailty, and other poor health outcomes. Again, many of the root causes for these less optimal trajectories were social in origin and potentially amenable through better prevention and stronger support.
We have been able to provide some strong and unique data on abuse, its manifestation, underpinnings, and lifetime implications. We see a generational shift in abuse, with younger women being maybe more likely to recognise and report different forms of violence. Older women seem to have described abuse in more indirect terms. Our PhD student Stephanie Lithgow is identifying this coded language, and her findings can inform better dialogue and detection on what is still seen as a taboo subject.
"Where has ALSWH highlighted inequity? In many areas. We were the first, for example, to demonstrate empirically that rural/remote women really did pay more than urban women for medical care (less bulk billing, higher out-of-pocket costs).
Personally, some of my own work has addressed bias. For example, we showed that older childless women were not (as the government was claiming at the time) an expensive and pointless drain on the community. They were, in fact, more highly educated, economically better off, and more socially engaged than older mothers. Yes, they used more services, but they paid for them.
We also showed that women who had babies in their late 20s or early 30s were in better physical and mental health than those who had babies early, late or not at all. BUT, the differences already existed at Survey 1, well before the babies arrived, and were completely explained by socioeconomic differences. Thus, women from more privileged backgrounds and with more education were in better health AND just happened to have babies at the age that paternalistic politicians told everyone they should.
We found a similar effect for relationships; women who formed long-lasting partner relationships in their mid to late 20s were those from privileged backgrounds, and it was that – not the relationship – that explained their better health.
My strong feeling about this body of work was that it ran counter to the tendency of right-wing male politicians to claim that marriage and babies were always and necessarily good for all women regardless of their personal circumstances or preferences. And also to put in place social policies that made it difficult for people – both men and women – to make other choices."
"The issue of time use was a particularly novel inclusion, as the way women use their time reflects socioeconomic status and underpins many health behaviours. Time use was Lois's baby. Right at the beginning, before they went to the interview for the project tender, we had a practice presentation with a panel of (male) reviewers.
One asked: 'Why do you emphasise time use? What does it have to do with health?'
Lois replied: 'You will see, health has everything to do with time'.
Childcare, balancing paid and unpaid work. . . . many women get sick because they are continually juggling time – and do not make time for their own health. A good example is having time for cervical and breast screening – which is almost where we started!
Almost all my current research revolves around time. For example, the health effects of too much time spent sitting, making time to remain or become more active. Where does the time for more activity come from? If it comes from less time sleeping, is this a health hazard?"
"Where has ALSWH highlighted under-represented areas of women’s health? From my perspective and interests, and there are many valid views on this, I feel we have helped shift the concept of women's health beyond reproductive health. We’re advancing the understanding of chronic conditions in terms of their links with women's health, such as early menopause and cardiovascular disease."
"Its existence came from the tail end of second-wave feminism in Australia, and so throughout its life, ALSWH has addressed inequity experienced by women. When ALSWH started, women were usually viewed through a reproductive health lens without thought to other biological differences, the gendered experience of being a woman, or the psychological differences between men and women. ALSWH uses the biopsychosocial lens and a holistic view of wellbeing to address women’s health issues."
Where to next
Still challenging inequity
The Australian Longitudinal Study on Women’s Health goes from strength to strength. Supported by the Australian Government, the study continues with its mission to listen to Australian women and highlight their health concerns.
Things may be going well for the study, but there are still gaps in our knowledge and glaring inequities both in women's health outcomes and the social factors that contribute to women's health.
So, where to next?
"The most glaring gaps, highlighted by COVID-19, are the health of poor and disadvantaged women, especially migrants with non-English speaking backgrounds."
"Big strides have been made for women researchers – BUT the fact remains that many women still struggle to balance the demands of work and family – which has implications for health. We are very concerned about weight and weight gain – what are the causes of excess weight gain and the health consequences?"
"Earnings for women in full-time employment are 82% of full-time earnings for men, and that hasn't changed in decades. Even when you compare people with the same educational qualifications and in the same work, men are paid more than women in their first years out of education. The inequality is there before you can blame the lack of social and economic support for parenthood and the cultural pressure on women to take on most of that work.
That's just one glaring gap, but the bias against women is systemic. There have been some changes since we started the project in 1995, but they are very small."
"We are seeing rising rates of multimorbidity (having more than one chronic condition), that can include specific women's health conditions in combination with other ones. These are hugely challenging for the health system to deal with and for a long time they have been in the 'too hard basket'. We have just been awarded funding on this topic and so I am really looking forward to seeing if we can make some progress!"
"The biggest gap I see is in the integration of care. We know women have multiple health needs, which they juggle within multiple social roles and responsibilities, sometimes with little time and other resources. Our fragmented care systems only add to their health burden and impede the best possible care and outcomes.
Coming back to the cervical cancer example, taking a Pap test or its modern equivalent might deal with one aspect of women's health and one risk, but you can't really separate this out from an overall holistic approach. We need a much more integrated, responsive and proactive health system that first (within the context of people's lives), recognises their past circumstances, their current needs, and the potential to change their future health trajectory."
"Making sure all voices are heard is of critical importance. We cannot act on equity issues that affect women if, for example, the voices of women with inequitable access to healthcare are not heard and not included."
"Inequity in health service systems has come to the fore recently. It has been my pleasure, along with Gita, to join the National Women’s Health Advisory Board, which the Department of Health and Aged Care established to address this issue. For example, women and men are treated quite differently when it comes to cardiovascular disease (note - this is not ALSWH research). So, understanding how these inequities arise and how we can fix them is a top priority right now."
The study continues to grow and evolve with support and direction from its dedicated team of caretakers.
In 2020, ALSWH ran a series of surveys capturing women's experiences of the COVID-19 pandemic. In 2022, for the first time in a decade, the study began recruiting new participants to ensure its cohorts keep pace with changes in our population. Additional substudies are now investigating cross-generational factors that influence the health of participants' children and the role of genetics in areas like endometriosis, menopause and chronic disease.
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The Australian Longitudinal Study on Women's Health is jointly managed by the University of Newcastle and The University of Queensland. We are grateful to the Australian Government Department of Health and Aged Care for funding, and to the women who provide the survey data.