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Establishing a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK: multi-method public and

Sarah K Harding¹, Beverley Samways², Amy Dillon³

¹The National Institute for Health and Care Research Applied Research Collaboration West (NIHR ARC West) at University Hospitals Bristol and Weston NHS Foundation Trust, UK & Population Health Sciences, Bristol Medical School, University of Bristol, UK.

International Journal of Population Data Science

|December 13, 2024

Insights

Stakeholders support a national linked database for Fetal Alcohol Spectrum Disorder (FASD) in the UK. This initiative aims to improve understanding, diagnosis, and long-term outcomes for individuals with FASD.

Area of Science:

Neuroscience
Developmental Pediatrics
Public Health

Background:

Fetal Alcohol Spectrum Disorder (FASD) is a leading non-genetic cause of developmental disability globally, with high prevalence suspected in the UK.
A significant data gap exists regarding FASD prevalence and impact within the UK population.

Purpose of the Study:

To engage the public and professionals to gauge views on creating a national longitudinal research database for FASD in the UK.
To determine stakeholder perspectives on the feasibility, acceptability, primary objectives, and design of such a database.

Main Methods:

A multi-method approach involving online workshops for adults with FASD and caregivers, 1:1 video calls, and a hybrid clinical workshop.
Consultations included clinicians, policymakers, data governance experts, third-sector representatives, and researchers.
Discussions focused on data availability, benefits, challenges, and design preferences for a pseudonymised national linked FASD database.

Main Results:

High stakeholder engagement was achieved through the tailored, multi-method approach.
Stakeholders strongly supported the development of a pseudonymised national linked database for FASD.
Anticipated benefits include increased awareness, improved diagnostic efficiency, facilitated international collaboration, and enhanced understanding of long-term outcomes.

Conclusions:

Public and professional involvement confirmed support for a national linked FASD database in the UK.
Establishing this database requires flexible, diverse, and embedded stakeholder collaboration.

Read full analysis

Abstract

Introduction:

Fetal Alcohol Spectrum Disorder (FASD) is one of the leading non-genetic causes of developmental disability worldwide and is thought to be particularly common in the UK. Despite this, there is a lack of data on FASD in the UK.

Objective:

To conduct public and professional involvement work to establish stakeholder views on the feasibility, acceptability, key purposes, and design of a national linked longitudinal research database for FASD in the UK.

Methods:

We consulted with stakeholders using online workshops (one for adults with FASD [and their supporters] N = 5; one for caregivers of people with FASD (N=7), 1:1/small-team video calls/email communication with clinicians, policymakers, data-governance experts, third-sector representatives, and researchers [N=35]), and one hybrid clinical workshop (N = 17). Discussions covered data availability, benefits, challenges, and design preferences for a national pseudonymised linked database for FASD. We derived key themes from the notes and recordings collected across all involvement activities.

Results:

Our tailored, multi-method approach generated high levels of stakeholder engagement. Stakeholders expressed support for a pseudonymised national linked database for FASD. Key anticipated benefits were the potential for: increased awareness and understanding of FASD leading to better support; new insights into clinical profiles leading to greater diagnostic efficiency; facilitating international collaboration; and increased knowledge of the long-term impacts of FASD on health, social care, education, economic and criminal justice outcomes. Given the rich data infrastructure established in the UK, stakeholders expressed that a national linked FASD database could be world-leading. Common stakeholder concerns were around privacy and data-sharing and the importance of retaining space for clinical judgement alongside insights gained from quantitative analyses.

Conclusions:

Multi-method and multidisciplinary public and professional involvement activities demonstrated support for a national linked database for FASD in the UK. Flexible, diverse, embedded stakeholder collaboration will be essential as we establish this database.

Keywords:

database fetal alcohol spectrum disorder public and professional involvement

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