Australian Longitudinal Study on Women's Health
Newsletter
From the directors
Welcome
In this edition, we celebrate Emeritus Professor Julie Byles’ retirement as ALSWH Director at the University of Newcastle. Just as we have the honour of charting the major events in your lives, you have played a major part in many of ours. Julie was part of the team that founded ALSWH in 1994 and has often credited the women born 1921-26 for her interest in gerontology (the study of ageing well). We wish Julie all the best with her next chapter. We know this is not goodbye – her connection to the study will continue as she takes on the new role of Special Envoy for the women born 1921-26.
Professor Deb Loxton is now the ALSWH Director at the University of Newcastle. Deb has a long association with the study. She completed her PhD with ALSWH in 2003 and has been the ALSWH Deputy Director at the University of Newcastle since 2009.
The study management team now includes ALSWH Directors, Professor Deb Loxton and Professor Gita Mishra, Deputy Director Associate Professor Leigh Tooth, Research Executive Manager Natalie Townsend and Data and Statistics Coordinator Peta Forder.
It’s been a whirlwind year and the study continues to go from strength to strength, all thanks to your continued support. In the coming year, we are inviting new participants to join the 1973-78 and 1989-95 cohorts and there are some exciting new substudies in development.
The Study Management Committee have been working closely with the Department of Health and Aged Care and other agencies, to ensure that the data you share contributes to health policy. You might even have seen data from the study highlighted in the Australian Government’s Women’s Budget Statement. Inequity in health service systems has also come to the fore recently and we are honoured to be part of the National Women’s Health Advisory Board, which the Department of Health and Aged Care established to address this issue.
This edition also focuses on your feedback. We have answered some common questions and addressed some issues you have raised. We read every comment you write in surveys, and we are also always happy to receive feedback and hear your thoughts via phone or email. So please reach out and stay in touch.
Yours in health,
Professor Gita Mishra (The University of Queensland) and Professor Deborah Loxton (University of Newcastle)
We acknowledge the traditional owners of the land across Australia, and their continuing connection to land, sea and community. We pay our respects to First Nations Australians and acknowledge their Elders past and present.
Study news
New horizons for Emeritus Professor Julie Byles AO
It has been my great privilege to have been one of the founding investigators and a Director of the Australian Longitudinal Study on Women’s Health. However, now the time has come for me to hand the reigns to new investigators, and follow some different paths to new adventures.
I was one of the small team of researchers from the University of Newcastle who started imagining the study back in 1994 and applying for funding from the Commonwealth government. I was pregnant then, and I remember writing parts of our study design and funding application from hospital having just had my daughter, Clancy.
Clancy is all grown up now and has her own children, and I am a busy and happy grandmother. I have taken up retirement, and like many of you told us, I don’t know how I had time to work. I am caring for my grandchildren and looking after my mum. I am also working on a new project to support the aged care system, and I have lots of local, national and international volunteer roles. I am still a proud and devoted investigator on the study.
My best wishes to you all,
Julie
Infectious disease and immunisation research
Infectious disease research isn’t all high-security laboratories and drug trials. Surveys and other large datasets also allow epidemiologists to investigate the prevalence, spread, and risk factors for infectious diseases (like influenza). For instance, Australian Census data were used to link Rubella (German Measles) during pregnancy to congenital deafness. In 2020, a longitudinal Swedish study confirmed that the Human Papillomavirus (HPV) vaccine reduced the incidence of cervical cancer by 90%.
We recently received approval to include immunisation records in the data we get from Medicare. This data will provide the Australian Government Department of Health and Aged Care and other policymakers with important information on immunisation issues. As always, your data is de-identified. Researchers never receive personally identifying details.
For more information on ALSWH health record linkage, see: https://alswh.org.au/for-participants/participant-information/data-linking-explained/
Spread the word, we’re recruiting!
Since the study commenced in 1996, the diversity of Australian women has changed significantly. To ensure our data represents all Australian women and their health needs, we are now recruiting more women to join the 1973-78 and 1989-95 cohorts.
Who can join?
Women born between 1973 and 1978 (now aged 45-50), or 1989 and 1995 (now aged 28 to 34) can join the Women’s Health Australia project! We are particularly interested in hearing from women with South, Southeast or Northeast Asian ancestry.
What’s involved?
New participants will be asked to complete a short, 2-minute online health survey. Then, they will join you in completing a survey every few years.
Can you help spread the word to your friends, family, and networks?
Share this link with them: alswh.org.au/join-womens-health-australia/
Current surveys
1989-95 cohort
The 7th main survey opens in the second half of 2023. Contact us if you have any questions.
1921-26 cohort
Six monthly follow-up surveys continue.
Substudy updates
GELLES
Thanks to you, we now know that roughly one in nine women have endometriosis (endo). Women with endo often experience severe pain, heavy periods, and infertility. Diagnosis can take 7-12 years, but we’re working on understanding more about this disease. A huge thank you to the 5,741 women from the 1989-95 cohort who took part in the Genetic variants, Early Life exposures, and Longitudinal Endometriosis symptoms Study (GELLES).
Learn more: alswh.org.au/gelles
Women from the 1973-78 cohort can still take part!
We need women with and without endo to take part in this study, so please check your inbox for an invite to participate.
MatCHES
We are launching a new substudy for the 1989-95 cohort – The Mothers and their Children’s Healthcare Experience Study (MatCHES). Have you given birth since 2015? Does your child or children live with you at least part of the time? We want to hear about your health and healthcare experiences before, during, and after pregnancy, and learn about your child’s health and development. We will use this information to improve healthcare for mothers and their children.
The MatCHES substudy will launch with the 1989-95 cohort’s survey this year, so keep an eye on your inbox for an invite to participate.
Learn more: www.alswh.org.au/matches
MatCH 2
In 2016, we asked mothers in the 1973-78 cohort to participate in the Mothers and their Children’s Health (MatCH) substudy. The original study reported on the health of 1973-78 cohort children, then aged 0-12. In 2024, we will launch a second survey for mothers in the 1973-78 cohort, and their children.
Please keep an eye on your inbox for an invitation to complete this survey.
New substudy coming in 2024
We’ll be launching an exciting new substudy in 2024. Menstrual disorders (irregular, heavy, or painful periods) and pelvic pain are common among adolescent girls and disrupt life activities. To prevent and manage menstrual disorders, we need to know more about how they develop.
The new substudy will be on the origins and impacts of menstrual disorders and pelvic pain. Keep an eye out for more information in the coming year.
Your data in action
ALSWH symposium
The annual ALSWH symposium is a fantastic opportunity for us to share study findings directly with the Australian Government Department of Health and Aged Care. The 2022 symposium took place in Canberra and was opened by the Hon Ged Kearney MP, Assistant Minister for Health and Aged Care. Hundreds of policymakers attended (in-person and online) and the event covered topics like healthy ageing, COVID-19's impact on healthcare, mental health, endometriosis, reproductive health and more. As always, the department representatives were highly engaged and appreciative of the valuable insights derived from your data.
National Women’s Health Advisory Council
ALSWH Directors, Prof. Gita Mishra and Prof. Deb Loxton are honoured to be members of the new National Women’s Health Advisory Council. The council brings together leaders and experts from women’s health organisations, consumer groups and peak bodies. This collaborative effort provides the Australian Government with advice and recommendations on reducing inequalities and improving health outcomes for Australian women and girls.
Read more at: https://www.health.gov.au/womens-health-advisory-council
National Plan to End Violence against Women and Children 2022-2032
ALSWH was the first study to show the long-term physical and mental health impacts of interpersonal violence, and we have strongly advocated for policies to include recovery. We are pleased that the Australian Government’s ambitious National Plan to End Violence against Women and Children 2022-2032 acknowledges the long-term impact of violence and includes actions to support long-term recovery and further invest in research.
Read more about how your data contributed at: alswh.org.au/post-outcomes/informing-the-national-plan-to-end-violence-against-women-and-children-2022-2032/
Inquiry into Universal Access to Reproductive Healthcare
The Australian National Women's Health Strategy 2020-2030 prioritizes universal access to sexual and reproductive health information, treatment, and services. In late 2022, the Senate established an inquiry addressing barriers to achieving this objective. Our submission focused on the affordability and availability of healthcare services, contraception, and reproductive healthcare. In May 2023, the Senate released its recommendations. The final report recognises the ALSWH submission and ALSWH staff participation in the public hearing.
Read more at: alswh.org.au/post-outcomes/inquiry-into-universal-access-to-reproductive-healthcare/
Major report on health and wellbeing in midlife
The Department of Health and Aged Care requested that our Major Report for 2022 focus on women’s health and wellbeing in midlife. The results present an encouraging picture, indicating that the 1946-51 cohort enjoys better self-reported and health-related quality of life than the women of the 1921-26 cohort at the same age. Similarly, the 1973-78 cohort has better physical health, higher education levels, and increased workforce participation compared to the previous generation. The report also identifies areas to monitor, such as declining mental health and rising rates of diabetes and other diseases, which may in part be linked to rising rates of obesity. These valuable insights will help policymakers to develop preventive health policies in the medium and long term.
Read the report at: https://alswh.org.au/post-outcomes/2022-major-report-health-and-wellbeing-of-women-in-midlife/
Help!
A snail ate my survey!
“Three years of La Niña’s rain hasn’t been good for paper surveys,” laughs Layla. “At first, we were mystified by the weird marks on the returned surveys, but now we’re experts at recognising snail damage.”
Layla is one of the friendly ALSWH Project Assistants based at the University of Newcastle’s Hunter Medical Research Institute. While they regularly send out replacements for soggy and snail-chewed paper surveys, they are also here to help you with surveys and answer your questions.
Layla - ALSWH Project Assistant
Layla - ALSWH Project Assistant
According to Layla, the team answer 50 calls or emails a week from participants. “People say they had a random thought in the shower, ‘Oh, I did the survey a couple of years ago, I wonder…’ And then they reach out with questions about the research results, privacy, or how their information is used. Sometimes they need to update their contact details or want to add something extra to their survey answers.”
Layla emphasizes the importance of participant feedback, which they promptly pass on to the appropriate person. For example, if someone was confused by the wording of a question, their feedback will improve future surveys.
You might have received a phone call from Layla or one of the team with a gentle reminder to finish your survey. “We do a LOT of phone reminders as the surveys wrap up,” laughs Layla. “I might call 200 participants a day.”
The team take measures to protect participants’ privacy and won’t tell another household member that you are part of the study. “If someone else answers the phone, we leave a message that the University of Newcastle called,” says Layla.
She acknowledges that these days people are suspicious if they don’t recognise the phone number. If you are concerned about scammers, Layla advises calling the ALSWH Freecall number (1800 068 081). The Project Assistants can check their call logs and verify if the caller was genuine.
“If someone has difficulty doing the survey – issues with their eyesight, or arthritis, or a broken arm – then we often do the survey over the phone with them”, says Layla. “Any of our participants can get in touch and we’ll schedule a convenient time to do the survey.”
When the Project Assistants aren’t taking calls and answering emails, they’re busy making sure that the information from thousands of paper surveys is processed and entered into our database correctly and that it is securely stored and protected.
“There’s a lot of variation in the role, and it keeps us busy, but I love that, and I love being able to help people”, says Layla.
Call 1800 068 081 from 9:00am-3:30pm AEST Monday to Friday to speak to a Project Assistant.
You can also leave a voice mail or send an email to alswh@newcastle.edu.au anytime.
Research snapshots
Irregular periods
Research on reproductive experiences (such as menstrual problems) as female-specific risk factors for common diseases is gaining attention. Sylvia Kiconco from Monash University looked at 20 years of data from the 1946-51 cohort. She found that women with irregular periods in their forties had slightly elevated risks of developing heart disease (20%) and diabetes (17%), compared to women with regular cycles. More research is needed to understand the biological connection. However, this research may contribute to improved health risk assessments for women and highlights the importance of screening for diseases.
Journal link: https://doi.org/10.1111/cen.14640
Cataract surgery
A cataract is a clouding of the lens in the eye. Cataracts are associated with ageing and are the leading cause of blindness globally. The number of cataract surgeries being performed in Australia isn’t keeping up with the increasing prevalence of cataracts in our ageing population. Long surgery wait times may lead to reduced quality of life and lack of independence, especially if driving is restricted.
At 79-84 years old (in 2005), 44% of the 1921-26 cohort had already had cataract surgery, and 8% had unoperated cataracts. Dr Mitiku Hambisa from the University of Newcastle looked at the factors related to cataract surgery over the following six years. By age 85-90, 70% of the women had had cataract surgery. Increasing age and being a current or ex-smoker were linked to higher odds of cataract surgery. Women were also slightly more likely to have had cataract surgery if they had skin cancer, which may suggest a link between UV exposure and cataracts. Women with private health insurance had 27% higher odds of having surgery, which highlights some inequity in women’s access to this vital surgery.
Journal link: https://doi.org/10.1007/s40520-022-02091-2
Best friends forever
Participants in the 1946-51 cohort have regularly rated their level of satisfaction with relationships including partners, family, friends and colleagues. Dr Xiaolin Xu, from The University of Queensland, found that women with satisfying social relationships in their 40s and 50s were less likely to develop multiple chronic conditions in older age. It turns out that unsatisfying social relationships could be as much of a risk factor for disease as obesity, physical inactivity, or alcohol intake.
Journal Link: https://doi.org/10.1136/gpsych-2022-100925
Does weight stigma affect endo diagnosis?
Rather than having surgery to diagnose and treat endometriosis, many women now receive a diagnosis of ‘suspected’ endometriosis. Medical discrimination faced by larger-bodied women could mean they are less likely to be offered surgery. Dr Ingrid Rowlands from The University of Queensland found that women in the 1989-95 cohort with a lower body mass index (BMI) were more likely to have surgically confirmed endometriosis, whereas women in the overweight BMI range were more likely to have a diagnosis of ‘clinically suspected endometriosis’. Women who gained weight were also less likely to have a surgical diagnosis than those whose weight remained stable.
Journal Link: https://doi.org/10.1016/j.orcp.2022.04.002
Your questions answered
Sex, gender, and women’s health research
After our last surveys, some of you told us that our language should be more gender inclusive. We’ve taken this feedback seriously and understand that the words we use matter. The ALSWH website now features the following acknowledgement, and you will start to see modified versions in our communications.
The Australian Longitudinal Study on Women’s Health, also known as Women’s Health Australia, was established to gather information to inform policies and services focussed on improving the health and wellbeing of Australian women. We acknowledge that the boundaries around what “women’s health” incorporates are not always clear, and that sex and gender are distinct concepts. Although it is necessary for us to collect information on health topics related to the female sex (i.e. menstruation, childbirth, menopause), we acknowledge that not everyone who identifies as a woman experiences these female-specific health issues or identifies as female. We value the contribution of all our participants over the years.
Why do you keep asking me that?
By asking the same questions at every survey, we can see how your health and use of health services change over time. Many of you comment that ‘this wasn’t a normal year’ because of something going on in your life. And at the next survey, your responses might be different.
Analysing everyone’s data over time shows how health and wellbeing are impacted by things like our environment, finances, diet, life events, health experiences, and access to services. Based on this, we can suggest changes to guidelines and policy, identify vulnerable groups at high risk, and recommend approaches to improve health and wellbeing. We can also look back to see if those policy changes worked and look forward to predict future health needs.
Keep scrolling to reveal how we have used your data on mental health and wellbeing to inform mental health policy over time ⬇️
How and why is my data linked with other data?
Improving health and healthcare services
Records such as Medicare, hospital, death and disease registers, and aged care datasets are linked to Study data. These records provide administrative and classification information on health events, medical conditions, treatments and medications, and services used. This wider perspective allows us to examine the entire patient journey through the health system, finding answers which we could not get from survey data alone. For example, by putting Medicare data together with survey data, we can investigate how women’s access to health services is affected by where they live.
How are records linked?
Your privacy is a priority. Records provided to the Study are subject to strict privacy and confidentiality regulations. Dedicated Data Linkage Units match and de-identify records. They do not have access to your survey answers. Your name and contact details are not included with the information we receive. The researchers and project staff who analyse your data also sign confidentiality statements. This process is approved by the responsible Human Research Ethics Committees.
Consent
We have previously asked for your consent to health record linkage. These records are now regularly provided without you needing to consent every time. If you wish to opt-out of this method of data collection, please contact the Study (see below). You can keep doing our surveys, and receive these newsletters, even if you opt-out of data linkage.
‘Til death do us part…
Because date and cause of death are essential in the analysis of health outcomes, we have approval from our Human Research Ethics Committees to check the National Death Index for everyone who has participated in the Study. This also avoids distress for relatives who may otherwise receive survey reminders for people who have passed away.
Survey follow-up
If you don’t complete your latest survey, we will send you reminders, including email, mail, SMS, and phone reminders. The Study may also access the Electoral Roll to locate participants if we’ve lost contact. If you do not wish to be contacted in this way, please let us know.
For more details, read our privacy policy: www.alswh.org.au/privacy-policy
See a list of the organisations involved and the information currently used in ALSWH research at: https://www.alswh.org.au/for-participants/participant-information/data-linking-explained
Further information
If you have concerns about our methods of data collection, need more information, or wish to opt out of record linkage, please contact the Study.
- Freecall: 1800 068 081
- Email: alswh@newcastle.edu.au
If you would prefer to discuss this with an independent person, you can contact:
- The Human Research Ethics Officer, Research Branch, The University of Newcastle, University Drive, Callaghan, NSW 2308, Ph: 02 4921 6333
- The Human Research Ethics Officer, The University of Queensland, St Lucia, QLD 4072, Ph: 07 3365 3924
- Office of the Australian Information Commissioner https://www.oaic.gov.au
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The research on which this newsletter is based was conducted as part of the Australian Longitudinal Study on Women’s Health by the University of Queensland and the University of Newcastle. We are grateful to the Australian Government Department of Health and Aged Care for funding and to the women who provide the survey data.
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