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Sensitive data sharing: benefiting women’s health

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Data sharing is fundamental for ALSWH as a national research resource to strengthen the evidence base for supporting development of women's health policy and practice. We are fully committed to making our data available and encouraging collaboration between researchers in wide-ranging fields. Data sharing among multidisciplinary groups provides the opportunity for fresh perspectives and for gaining new insights and knowledge on women health." Professor Gita Mishra, ALSWH Director

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The Australian Longitudinal Study on Women's Health (ALSWH) is a collaborative project of The University of Newcastle and The University of Queensland and has been funded by the Australian Government for almost two decades. Since 1995 over 50,000 women have been surveyed, most choosing to remain part of the study for many years. ALSWH collects information about changes in the mental, physical, and social health of everyday women and their families over time. It also gathers data about life events, employment, and health service use. This level of detail and longevity is rare and highly valuable on an international scale. ALSWH has enabled data users to produce a rich and accurate portrait of women's health and the experiences that benefit or hinder their wellbeing.

Survey data from the Australian Longitudinal Study on Women's Health in Research Data Australia.

If you haven't heard of ALSWH, you've probably read a report, paper, or news article based on its data. You may even use a public service or program guided by its findings. Data from ALSWH has led to almost 500 peer-reviewed papers across domains of clinical medicine, public health, and ageing research. These include highly-cited studies that, for example, identify factors contributing to obesity in Australian women1 and demonstrate the link between increased physical activity and reduced symptoms of depression2. ALSWH also contributes directly to national health policies by informing recommendations for services and programs for chronic health conditions (e.g. diabetes), interpersonal violence, carers, nutrition and physical activity.

ALSWH adds considerable value to other data sources by supporting sub-studies and data linkage projects. With participants' consent, ALSWH data has been linked to women's Medicare data to reveal the uptake and use of new and sometimes-controversial health service schemes3, and evaluate the costs of novel healthcare programs4. The NHMRC-funded 'Mother's and their Children's Health' (MatCH) sub-study will collect data for children from a sample of mothers already participating in the ALSWH.

This represents an unrivalled opportunity to consider the links between children's wellbeing and the full range of health, social, and service-use information already collected from their mothers at earlier stages of the study.

The substantial contribution of the ALSWH to scientific knowledge, public policy, and population health is well evidenced by its international reputation and continued Government funding. But did you know that ALSWH is also a leading example of sensitive data sharing? The survey collects information about participants' health and lifestyle but is used by over 650 collaborators - most of whom are not part of the original research team.

How they do it

The ALSWH has always had clear policies for maintaining the quality and security of data and enabling others to find, request and receive conditional access to the data5,6. These policies are founded on the research team's belief that this dataset is a 'public resource'. ALSWH data-sharing practices address legal and ethical considerations whilst promoting reuse, collaboration, and research integrity. 

Discoverability:
ALSWH has a public website with detailed information about the study and data accessibility. Metadata records for the study also exist in several national repositories, including Research Data Australia, Australian Data Archives (where ALSWH data is also archived), and Trove.

Conditional access to data for reuse:
Potential reusers must complete an 'Expression of Interest' form via the ALSWH project page. The reuser must provide information about themselves and a description and justification for their intended use of the data. This process is designed to maintain study integrity and prevent research overlap. The application is reviewed by the 'ALSWH Publications, Substudies and Analyses (PSA) committee'. If approved, the confidentialised data is received by the data reuser.

Legal and Ethics:
Directly identifying information is removed from all ALSWH datasets. This information is kept at a separate, secure location to the datasets and is not accessible. All users of ALSWH data are required to sign a Privacy Protocol similar to a data license, which specifies that the data cannot be distributed or used for research purposes beyond those specified in the 'Expression of Interest' form. The ALSWH Information Statement to participants (which requires participant agreement before they enter the study) does not preclude data sharing. Participants are further informed that 'my answers will not be linked with my personal details and so will not be identifiable'.

Authors: Dr Sarah Olesen (ANDS), Professor Gita Mishra, and Associate Professor Leigh Tooth.

References

  1. Ball K, Brown W, Crawford D. Who does not gain weight? Prevalence and predictors of weight maintenance in young women. International Journal of Obesity, 2002, 26(12), 1570-1578.
  2. Brown W. Prospective study of physical activity and depressive symptoms in middle-aged women. American Journal of Preventive Medicine, 2005, 9(4), 265-272. DOI: 10.1016/j.amepre.2005.06.009, PMID: 16242588
  3. Byles JE, Dolja-Gore X, Loxton D, Parkinson L, Stewart Williams J. Women's uptake of Medicare Benefits Schedule mental health items for general practitioners, psychologists and other allied mental health professionals. Medical Journal of Australia, 2011, 194(4), 175
  4. Lowe J, Byles J, Dolja-Gore X, Young A. Does systematically organized care improve outcomes for women with diabetes. Journal of Evaluation in Clinical Practice, 2010, 16(5), 887-894
  5. http://www.alswh.org.au/for-researchers
  6. Australian Bureau of Statistics 2009, ABS Data Quality Framework, cat. no. 1520.0,