FAIR Data - A is for Accessible David Fitzgerald, Data Manager for the Australian Longitudinal Study of Women’s Health (ALSWH) presented on how ALSWH makes a nationally significant longitudinal study with highly sensitive data accessible for others to reuse. Full webinar recording: https://youtu.be/me27whU8GG8

1. Accessibility and the Australian
Longitudinal Study on Women’s
Health, ALSWH
David Fitzgerald
Data Manager, ALSWH

2. FAIR Data Principles
To be Accessible:
(meta)data are retrievable by their identifier using a
standardized communications protocol.
the protocol is open, free, and universally implementable.
the protocol allows for an authentication and authorization
procedure, where necessary.
metadata are accessible, even when the data are no longer
available.

3. What is the ALSWH?
• Collaborative project of The University of
Newcastle and The University of Queensland
• One of Australia’s longest running longitudinal,
epidemiological studies
• Funded by the Australian Government since 1995
• Over 40,000 women surveyed since 1996
• A new cohort of 17,000 added in 2013

4. Who is in the ALSWH?
1921-26
Cohort
Aged 70-75 in
1996 now
aged 91-96
1946-51
Cohort
Aged 45-50 in
1996 now
aged 66-71 1973-78
Cohort
Aged 18-23 in
1996 now aged
39-46
1989-95
Cohort
Aged 18-23 in
2012/13 now
aged 22-28

5. ALSWH Methodology
• Surveys collect data on women’s:
• mental, physical, reproductive and social health;
• life transitions, life events, employment, health service use, and more…
• Data linkage with National and State-based administrative data sets
• MBS, PBS, Cancer Registries, Admitted Patients Hospital and
Perinatal Collections

6. Impact of ALSWH
Data from ALSWH informs:
• >500 peer-reviewed papers in
clinical medicine, public health, and
ageing research journals.
• National health policies by informing
recommendations for services and
programs for chronic health
conditions, interpersonal violence,
carers, nutrition, physical activity,
ageing, and more… 2010 National Women’s Health Policy

7. Accessibility : Data and sensitivity
• “data are retrievable by their identifier using a standardized
communications protocol.”
ALSWH data are de-identified with new identifier
• Respondents have one identifier for analysis
• No names, addresses, post codes, dates of birth
• Analysis by ID alias, distinct from administrative ID
• Small cell sizes are grouped, eg country of birth
• Re-users must not identify respondents

8. Accessibility : Legal and Ethical
• Legal contract with Australian Government Dept of Health
• ALSWH has been approved by Ethics Committees at
Universities of Newcastle and Queensland
• Each new survey, project subject to ethics committee approval

9. Accessibility
Conditional access
• Re-users must complete an ‘Expression of Interest’ form
• Provide information about themselves and intended use of the data
• Application is reviewed by ‘ALSWH Publications, Substudies and Analyses
(PSA) committee’
• If approved
• data re-users sign Statement of Data Use and Confidentiality
Statement before receiving the de-identified data
• 6 monthly progress reports

10. Conditional Access
If EoI successful:
• Survey data are encrypted with 7z software
• Data are sent via AARNet CloudStor
• Email sent with password and contact established with ALSWH Data
Management for future correspondence
• Linked Data: data are analysed in ALSWH offices or Sax Institute’s
SURE facility (not our data to send)

11. Public Metadata
ALSWH has a public website
http://www.alswh.org.au/
• Data Dictionary–variables
• Data Dictionary Supplement
– descriptions of frequently
used variables
• Data Map
• Variable Lists Spread sheets
…
“Protocol is open, free, and universally implementable”

12. Public metadata
Website
• Data Books
• Survey questionnaires
• Technical reports
• FAQs
“Protocol is open, free, and universally implementable”

13. Accessible when data are no longer
Archiving
ALSWH Survey data and
metadata are archived at
• Australian Data Archives
“metadata are accessible, even when the data are no longer available”

14. Acknowledgements
The Australian Longitudinal Study on Women's Health is managed 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 data.
Newsletters
www.facebook.com/alswh
@ALSWH_Official
Social Media
www.alswh.org.au/subscribe