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

Amy Finlay-Jones,Neil Reynolds,Tracey Tsang,Jane Halliday,Hayley Passmore,Narelle Mullan,Heather Jones,Astrid Chapman,Natalie Kippin,Tracy Reibel,Martyn Symons,Carol Bower,Elizabeth Elliott,Rochelle Watkins

doi:10.23889/ijpds.v6i3.1703

Abstract

Fetal Alcohol Spectrum Disorder (FASD) is a neurodevelopmental disorder caused by exposure to alcohol in utero. It has pervasive, lifelong impacts and is recognised as a major public health concern in many countries where alcohol is used. The FASD Research Australia Centre of Research Excellence (CRE) was funded by the National Health and Medical Research Council to generate and translate evidence to address prevention, diagnosis, and management of FASD in Australia. The current paper describes the approach to policy and practice impact taken by our CRE, including our stakeholder engagement processes and the key principles that underlie our approach. We provide examples of policy and practice influence in FASD prevention, diagnosis and management that have been achieved over the past five years and discuss challenges that are routinely faced in the translation of our work.

Highlights

Finlay-Jones, A et al International Journal of Population Data Science (2022) 6:3:06 Our approachFetal Alcohol Spectrum Disorder (FASD) is a lifelong neurodevelopmental condition characterized by severe impairments across several domains of functioning
Data generated by the Centre of Research Excellence (CRE) have identified and filled knowledge gaps and informed clinical practice and policy in the prevention, diagnosis and management of FASD (Table 1)
Several of our studies rely on the use of existing data infrastructure, such as adminstrative data that can be linked to maternal alcohol use disorders [21], prenatal alcohol exposure [22] or cases of FASD

Summary

Introduction

Finlay-Jones, A et al International Journal of Population Data Science (2022) 6:3:06. The Consumer Reference Group members live in six different States/Territories, and four members are from non-metropolitan locations These stakeholders are routinely involved in guiding and advising on CRE research priorities and methods and engaging in translation and dissemination activities. A major initiative has been the development, maintenance and expansion of resources for stakeholders including via the government-funded FASD Hub Australia, a website (www.fasdhub.org.au) led and run by CRE investigators and partners This Hub provides current, high-quality, evidence-based information about alcohol use, pregnancy and FASD, including resources on prevention, diagnosis, and treatment in Australia, for health and other professionals, researchers, policy makers, parents and carers and the public. Further examples of how communication, facilitation and advocacy have been embedded in our research to support policy and practice impact are described below

Discussion

Findings

Strengths and limitations of our approach