Participant newsletter
Australian Longitudinal Study on Women's Health
Directors' welcome
2020 will stand out as a different, and for many, a difficult year. Despite the challenges, work on the Australian Longitudinal Study on Women’s Health continued from home offices, kitchen tables, and makeshift desks around the country.
We want to acknowledge that women all over the country were, like us, facing significant challenges. In times like these, it is important to document the impact of events and for your voices to be heard. In fortnightly COVID-19 surveys between April and November, many of you wrote about your stress and concerns. Many of you also wrote about your strengths and experiences of kindness. In addition to the COVID surveys, the sixth survey of the 1989-95 cohort closed, as did the ninth survey of the 1946-51 cohort. We began preparations for survey nine of the 1973-78 cohort and women in the 1921-26 cohort continued with their six-monthly surveys.
In October 2020, the Australian Government announced a further three years of funding for ALSWH. Some of this funding will be used to recruit new participants to the 1973-78 and 1989-95 cohorts so that we continue to represent the diverse backgrounds of women in Australia.
In November, we launched our new, mobile-device friendly website. Visit www.alswh.org.au/for-participants to find information about your upcoming surveys, substudies, research results and past newsletters.
Finally, we are looking forward to a major milestone year. 2021 marks the Study’s 25th year in operation and also the first of many 100th birthday celebrations for the wonderful women of the 1921-26 cohort. Our congratulations and best wishes go out to this year’s group of centenarians – we are honoured to be a part of your lives.
Yours in health,
Professor Gita Mishra, ALSWH Director Brisbane & Professor Julie Byles, ALSWH Director Newcastle
Professor Julie Byles, ALSWH Director Newcastle (L) and Professor Gita Mishra, ALSWH Director Brisbane (R)
Professor Julie Byles, ALSWH Director Newcastle (L) and Professor Gita Mishra, ALSWH Director Brisbane (R)
Visit the participant pages at our fresh, new ALSWH website.
Visit the participant pages at our fresh, new ALSWH website.
To mark their 100th birthdays, ALSWH centenarians will receive a specially designed card with the original artwork “Reflections on Life” from a drawing by Professor Julie Byles.
To mark their 100th birthdays, ALSWH centenarians will receive a specially designed card with the original artwork “Reflections on Life” from a drawing by Professor Julie Byles.
Haven't times changed
The Australian Government has funded the Australian Longitudinal Study on Women’s Health for the past 25 years. We’ve seen a lot of changes in the last quarter of a century, but one thing has remained constant – you.
Thank you for you being part of the nation’s longest running health survey. The information you share has directly contributed to health strategy and policy that benefits all Australian women. And that’s something worth celebrating.
1996
The Australian Longitudinal Study on Women's Health began at the University of Newcastle with the first three cohorts recruited through Medicare.
The original project team - 1996 L-R: Wendy Brown, Margot Schofield, Annette Dobson, Lois Bryson, Julie Byles
The original project team - 1996 L-R: Wendy Brown, Margot Schofield, Annette Dobson, Lois Bryson, Julie Byles
Our first website (part of the University of Newcastle site) launched.
1998
The 1946-51 cohort led the charge with the first of many follow-up surveys.
2004
The University of Queensland joined the University of Newcastle in conducting the Study.
2007
Our second website, and our own home on the internet, was launched at www.alswh.org.au
2010
Your information contributed to the 2nd National Women’s Health Policy (2010-2020).
2011
Everything became electronic. Study staff scanned every page of the participant consent files and every piece of correspondence ever sent in by a participant. This process took 16 months.
The 1921-26 cohort started six-monthly surveys.
2012
The third version of our website was launched.
The first of many online surveys were completed (1973-78 cohort’s 6th survey).
2012-13
17,000 young women born 1989-95 were recruited to a new cohort.
2016
Mothers and their Children's Health (MatCH) substudy: Collected health data on the children of the 1973-78 cohort.
2017
Our logos got a little update.
2019
Your information contributed to the 3rd National Women’s Health Strategy (2020-2030).
Menarche to Pre-Menopause (M-PreM) substudy: the first substudy to perform in-person health checks and take blood samples.
2020
14 fortnightly COVID-19 surveys were conducted online.
The fourth version of our website was launched at www.alswh.org.au. We're mobile friendly!
2021
This year, participants born in 1921 will celebrate their 100th birthday!
To mark their 100th birthdays, ALSWH centenarians will receive a specially designed card with the original artwork “Reflections on Life” from a drawing by Professor Julie Byles.
To mark their 100th birthdays, ALSWH centenarians will receive a specially designed card with the original artwork “Reflections on Life” from a drawing by Professor Julie Byles.
The study is growing. Over the next couple of years, additional participants will be recruited to the 1989-95 and 1973-78 cohorts to ensure we continue to represent Australia’s diverse population.
As times change, so too does technology. We’ve moved from paper surveys, filing cabinets, and manual data entry, to automated data entry, then online surveys, automated scanning and high tech data storage. Throughout all of these changes, we’ve remained vigilant in our commitment to strict security around your information and the data you have entrusted to us. We are now upgrading our data storage system again.
In line with state of the art improvements rolled out across the University of Newcastle, we are going to relocate ALSWH data to the Amazon Web Services platform. AWS is a certified level 3 data centre with protected status. This means that AWS is secure enough to hold Australian Defence Force data. Numerous organisations such as the ATO, Banks, Government Departments, Airlines and other Universities within Australia use AWS as a secure and reliable location to store their data. The AWS data centre that will store ALSWH data is located in Australia. Our data management team members have had the necessary conversations with experts in the field and are assured that this is the best way forward to ensure the security of your data. The way your data are stored won’t actually change - your survey responses and personal information (like your name, address and so on) will remain separate.
Research Assistant Jenny Helman with returned surveys in the mailroom (2010).
Research Assistant Jenny Helman with returned surveys in the mailroom (2010).
Project Assistant Zoe processing your surveys and correspondence. You might have received a call from her in the past.
Project Assistant Zoe processing your surveys and correspondence. You might have received a call from her in the past.
Food for thought
Researchers are using your survey responses to understand how food changes us, why we eat the way we do, and how we can make positive, lasting changes to our everyday diets. This is what they found out in 2020.
You are what you eat
What happens if you radically change your diet to lose weight? Low carbohydrate diets that cut out sugars and starches are popular for short-term weight loss. What happens if you cut out carbohydrates for a long time? Researchers looked at women in the 1946-51 cohort who followed a low-carb diet for 15 years. They found these women had a 27% higher risk of developing type 2 diabetes1. They were more likely to have an unbalanced diet with less fruit, cereals and high-fibre bread. These core foods are important sources of nutrients and fibre that may protect against type 2 diabetes.
The food women eat before becoming pregnant can also impact their developing baby and change the course of their pregnancy. A mother’s body needs to access stores of nutrients for critical steps in the baby’s development. Some of these nutrients take a long time to build up in our system or are needed very early in pregnancy. This is why we are investigating what women eat before they are pregnant.
Women from the 1973-78 cohort who ate more traditional vegetables (like carrots, broccoli, pumpkin, cauliflower, cabbage, potatoes, and green beans) had a lower risk of giving birth prematurely2. The researchers think that this is because these vegetables are high in antioxidants and nutrients that reduce inflammation and support a smooth pregnancy.
Women’s pre-pregnancy diet can also affect their future children’s brain development and later behaviour. We found that children aged 5-12 in the MatCH substudy had lower hyperactivity scores and fewer peer problems (like being solitary, bullied, or preferring adult company) if their mothers ate more healthily before pregnancy3.
What drives our food choices?
Some of our food preferences are built-in. For example, we’re born with a preference for sweet and salty foods. Many vegetables have a bitter taste, so we have to learn to like them. Australian guidelines recommend cereal for babies' first food. Interestingly, babies from the MatCH substudy who ate vegetables first went on to eat a wider variety of vegetables and ate fruit and vegetables more frequently than children who were given cereal4.
Sometimes our food choices are limited by our lifestyle. We found that new mothers have better diet quality in the first 12 months after birth than women who gave birth more than 12 months ago5. Lack of time, children’s food preferences and juggling the work-life balance all impact women’s food choices. Having better access to maternal and child health services made a positive difference to diet quality in the first 12 months.
Can we change our eating habits?
The Australian Dietary guidelines recommend five serves of vegetables, two serves of fruit, plus whole grains, dairy, protein, and limited amounts of junk food. Fewer than 1 in 10 of us meet these guidelines. Changing our eating habits is complicated - culture, lifestyle, social pressure, time pressures, food availability, and marketing are just some of the barriers we face. Researchers looked at the 1946-51 cohort’s eating habits over 12 years to see if they changed. They divided the 1946-51 cohort into three groups based on their diet quality at Survey 3 in 2001. By Survey 7 in 2013, just over 50% of women with the least healthy diets had made significant, positive changes to their diet6. There are more survey data to sift through and more work to be done understanding what motivated these women to make positive changes.
- NMCD, 30(3), 400-409 (2020). https://doi.org/10.1016/j.numecd.2019.11.001
- AJCN, 111(5), 1048-1058 (2020). https://doi.org/10.1093/ajcn/nqaa057
- Eur. J. Nutr., 60(1), 503-515 (2021). https://doi.org/10.1007/s00394-020-02264-7
- Br. J. Nutr., 124(12), 1320-1328 (2020). https://doi.org/10.1017/S000711452000238X
- J. Clin. Med., 9(2), 446 (2020). https://doi.org/10.3390/jcm9020446
- Nutrients, 12(1), 147 (2020). https://doi.org/10.3390/nu12010147
The COVID-19 surveys
From April to November 2020, we asked about your experiences of the COVID-19 pandemic. The 13 reports from your fortnightly surveys are available at www.alswh.org.au. This is just some of what you told us:
Study updates
Get the latest on upcoming surveys and substudies, and find out where your information is making a difference to women's health and wellbeing.
Upcoming surveys
1973-78 cohort
The 9th 1973-78 cohort pilot survey can still be completed.
Contact us for your link to the online survey or to be sent a paper survey.
The 9th 1973-78 cohort main survey will be launched in May/June 2021.
1946-51 cohort
The 10th 1946-51 cohort pilot survey will start at the end of 2021.
1921-26 cohort
Six monthly follow-up surveys for women in the 1921-26 cohort continue.
Substudies update
The information our 1973-78 cohort and their children gave for the Mothers and their Children’s Health (MatCH) substudy continues to provide insights on topics like breastfeeding, how to get kids to eat vegetables, treating maternal depression, and the effect of mothers' pre-pregnancy diet on birth and children’s development. For the latest research visit www.alswh.org.au/match
M-PreM
The Menarche to Pre-Menopause (M-PreM) substudy involves a hands-on health assessment. By taking part, participants from the 1973-78 cohort are helping uncover how women’s chronic disease risk is affected by their reproductive history (things like the timing of their first period, pregnancies, menopause and so on).
After a break during the COVID-19 lockdowns, M-PreM clinics are back. Sydney and Perth clinics are open now – participants, please keep an eye on your inbox for emailed invitations. To find out more and register your interest visit www.alswh.org.au/m-prem.
GELLES
In 2021, ALSWH is launching the Genetic variants, Early Life exposures, and Longitudinal Endometriosis symptoms Study (GELLES). Endometriosis is a complex and poorly understood disease. In this substudy, women from the 1989-95 and 1973-78 cohorts will be invited to provide DNA samples and answer survey questions to help uncover the causes of endometriosis and speed-up diagnosis.
Invitations to participate will be emailed later this year. Visit www.alswh.org.au/gelles for more information.
Contraceptive choice for women with chronic disease
We’re investigating how women with chronic health conditions (and their partners) make contraceptive decisions. If you are in the 1989-95 cohort and have previously indicated that you have a chronic health condition, you may be emailed an invitation to participate. The information collected will be used to develop tools to help navigate contraceptive decision making and reproductive planning.
Living beyond expectations: How older women demonstrate successful and healthy ageing
Current participants in the 1921-26 cohort are part of an elite group, already past their mid-90s and likely to live to 100. In-depth interviews with a sample of these women have provided insights into the experience of extreme old age and how doing what they want to do is balanced with their ability and support. We will shortly begin interviewing participants from the 1946-51 cohort to gain insights into the prospects of healthy ageing in this cohort.
Your data in action
Each year, the Department of Health commissions a Major Report using your data, on a topic of their choice. The Study’s 2020 report examined the development of multimorbidity (two or more chronic conditions) across the four ALSWH cohorts, as well as the impact of multimorbidity on women’s quality of life and the use of health services. Reports from each of the 13 COVID-19 surveys were also presented to the Department of Health.
Your data were used to support government policy through submissions to the House of Representatives' Standing Committee on Social Policy and Legal Affairs Inquiry into family, domestic and sexual violence, and the Department of Health review of Pregnancy Care Guidelines.
The ALSWH symposium, ‘Linking Data to Inform Policy’ was held virtually. We presented lunchtime sessions from the 23rd to 27th of November to stakeholders from the Department of Health, other Government departments and related agencies. The sessions showcased our latest research on topics including the health impacts of COVID-19, use of contraception and assisted reproduction techniques, menopause, and healthy ageing.
Visit www.alswh.org.au to find all our reports, submissions and videos.
How, and why, is my data linked with other data?
1. 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 your needing to consent every time. If you wish to opt out of this method of data collection, please contact the Study. You can keep doing our surveys, and receive these newsletters, even if you opt out of data linkage.
2. ‘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 receive survey reminders for people who have passed away.
3. Survey follow-up
If you don’t complete your latest survey we will send reminders. These may include targeted reminders made by matching your email address or mobile phone number with social media records in a secure and confidential manner. The Study may also access the Electoral Roll to locate participants. If you do not wish to be contacted in this way, please let us know.
For more information
Read our privacy policy: www.alswh.org.au/privacy-policy
See a list of the organisations involved and the information currently used in our research: https://www.alswh.org.au/for-participants/participant-information/data-linking-explained/
Contact us
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.
If you would prefer to discuss this with an independent person, you can contact:
- Human Research Ethics Officer, Research & Innovation Division, The University of Newcastle, University Drive, Callaghan, NSW 2308, Ph: 02 4921 6333, Human-Ethics@newcastle.edu.au
- 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/
Stay connected between surveys
Contact us
If you have questions or concerns about the Study or need to update your details, please contact us.
Phone: Freecall 1800 068 081
Email: info@alswh.org.au
Web: www.alswh.org.au
Social media
Facebook: @womenshealthaustralia
Instagram: @ALSWH_Official
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 for funding and to the women who provided the survey data.
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