Valuable research into Fetal Alcohol Spectrum Disorder is no longer being lost in translation - with impactful and life changing results
Fetal Alcohol Spectrum Disorder (FASD) is the name given to a group of conditions in children who are exposed to alcohol in the womb. It is a complex and largely preventable public health issue in many countries around the world.
In Australia, the National Health and Medical Research Council focussed efforts to prevent, diagnose and manage FASD with funding for the creation of the FASD Research Australia Centre of Research Excellence (CRE) in 2016.
Over the following five years, research and advocacy efforts by the CRE and broader network have led to successful changes in policy and practice across several areas.
- The introduction of mandatory labelling of alcohol products about the risks associated with alcohol use in pregnancy
- Building health system capacity to screen for alcohol use in pregnancy
- Raising awareness of the need to assess for and address neurodevelopmental difficulties in justice settings.
But it’s not all about producing evidence through research. The key to the success of the CRE is the ability to communicate new evidence effectively across a number of very different communities including consumers, policymakers, medical practitioners and researchers.
Dr Amy Finlay-Jones, Head of the Early Neurodevelopment and Mental Health team at Telethon Kids Institute and postdoctoral researcher in the FASD CRE, says “‘The language used by academics and researchers is not always easy to understand within other communities. For years research findings have been presented to policymakers, however they are not necessarily presented in a way that is meaningful to policymakers. This has often resulted in important research findings being shelved before reaching wider communities. It is critical that we work with stakeholders from the outset so that we conduct relevant research and communicate evidence in a way that is accessible to the people who we wish to use it.”
To achieve this in the CRE, a consumer reference group was set up. The group comprised 16 members Aboriginal and non-Aboriginal members from across Australia. It is supported by a national network of affiliates in health, justice, education, and disability sectors. Close partnerships with advocacy groups including NOFASD and the Foundation for Alcohol Research and Education further support policy and practice influence.
A new article published in the International Journal of Population Data Science (IJPDS), provides case studies of research and translation initiatives that have been undertaken by researchers within the FASD CRE over the past five years. The article also includes details of the following key insights learned along the way:
- The need for carefully designed communications to improve discussions between research, practice, policy, and the public.
- Helping scientists to understand and respect the important roles of consumers and advocates when communicating research findings.
- Funders and decision-makers should support the process by providing appropriate resources and timeframes that reflect the complexity of the translation process.
Dr Amy Finlay-Jones, Head, Early Neurodevelopment & Mental Health; Starlight Fellow
BPsych(Hons), MPsych(Clinical), MHealthEcon, PhD (Clin Psych)
Finlay-Jones, A., Elliott, E., Chapman, A., Halliday, J., Jones, H., Kippin, N., Mullan, N., Passmore, H., Reibel, T., Reynolds, N., Symons, M., Tsang, T., Watkins, R. and Bower, C. (2021) “It takes a village: Influencing policy and practice to prevent alcohol use in pregnancy and promote better outcomes for individuals living with Fetal Alcohol Spectrum Disorder”, International Journal of Population Data Science, 6(3). Available at: https://ijpds.org/article/view/1703 (Accessed: 28 February 2022).