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ALSWH accessible webinar 6 Sep 2017

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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

Published in: Education
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ALSWH accessible webinar 6 Sep 2017

  1. 1. Accessibility and the Australian Longitudinal Study on Women’s Health, ALSWH David Fitzgerald Data Manager, ALSWH
  2. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 12. Public metadata Website • Data Books • Survey questionnaires • Technical reports • FAQs “Protocol is open, free, and universally implementable”
  13. 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. 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

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