Addressing the fetal alcohol spectrum disorder (FASD) ‘data gap’

JGI Seed Corn Funding Project Blog 2022-2023: Cheryl McQuire

A red puzzle bridge connecting two puzzle islands.

Cheryl McQuire on behalf of the study team: Amy Dillon, University of Bristol; Prof Raja Mukherjee, Surrey and Borders Partnership NHS Foundation Trust; Prof Penny Cook, University of Salford; Sandra Butcher, National Organisation for FASD; Andy Boyd, Director, UK Longitudinal Linkage Collaboration; Beverley Samways, University of Bristol; Dr Sarah Harding, University of Bristol

Twitter: @cheryl_mcquire

What’s the problem?

Landmark UK guidance has called for urgent action to increase identification, understanding, and support for those affected by fetal alcohol spectrum disorder (FASD); but a paucity of national data undermines the feasibility of achieving this.

Tell me more…

Fetal alcohol spectrum disorder (FASD) is caused by exposure to alcohol in pregnancy. It is the most common non-genetic cause of lifelong disability worldwide. FASD is associated with problems with learning and behaviour and an increased risk of physical, mental health, substance misuse, and social problems. Prevention, early diagnosis, and support for people living with FASD, can improve outcomes and lead to societal cost savings.

In the UK, FASD is thought to be particularly common. A study in Manchester schools found that 2% of children had confirmed FASD, and 4% had possible FASD. UK health organisations have recommended urgent action to improve FASD prevention, diagnosis, and support. Publication of the National Institute for Health and Care Excellence (NICE) Quality Standard for FASD in 2022 sets the strongest precedent yet for improved prevention, assessment, and support for FASD.

In parallel, the UK government has called for a transformation in the way people’s information (data) is used to improve health. However, reliable and accessible data on FASD is not available. This makes it difficult to achieve important FASD research, policy, and healthcare goals.

A potential solution?

We believe that an important step towards addressing the FASD ‘data gap’ will be to produce the first UK National Linked Database for FASD. This would bring together de-identified FASD assessment records from NHS and private health settings that have not previously been available for research. These records would be stored in a trusted research environment, enabling researchers to use the data in way that protects people’s privacy. FASD records could then be linked to other population records including health, education, employment, crime, and social care. It would provide new insights into the characteristics and needs of people living with FASD, impacts and costs of FASD in the UK, and identify opportunities for improving outcomes.

What were the aims of this seed corn project?

This seed corn funding allowed us to take the first steps towards making a UK National Database for FASD a reality. We used it to establish the feasibility, acceptability, key purposes, and data structure of the first linked national research database for fetal alcohol spectrum disorder.

What did we do?

We spoke to over 100 stakeholders including clinicians, data specialists, researchers, policy makers, charities, and people living with FASD to find out:

  1. What they want from a FASD database
  2.  How this database could be used to advance policy, research and practice
  3.  What UK data sources are currently available, and are due to become available, for FASD
  4.  What data are commonly collected by FASD clinics
  5.  What opportunities there are for standardisation/harmonisation of FASD data
  6.  What should be considered in relation to ethical and data governance frameworks, data collation, transfer, storage, linkage, onward sharing and sustainability

To maximise engagement, we took a flexible and tailored approach, speaking to people using email/video conferencing and holding 1 in-person workshop to coincide with the UK Conference for FASD 2023 (Salford, March 2023).

What did we find?

There was strong support for a national FASD database. Charities and those living with FASD spoke of the benefits of increased awareness, understanding and support for FASD. Clinicians reported that the detailed clinical information provided on a national database could improve diagnosis, making assessment more efficient, potentially reducing long waiting lists. Researchers expressed enthusiasm for using it to better understand long-term outcomes, costs and opportunities for improved support. Policy makers identified clear alignment with current FASD and data transformation policy. The most common concern was around privacy and data sharing. The study team has been developing a data pipeline model to ensure that these concerns are appropriately addressed.

What’s next?

We are developing a ‘data pipeline’ model, in collaboration with representatives from FASD clinics and people working in secure data environments to take the initial steps in making the national database for FASD a reality.

We have clear plans for follow on funding, maintaining the strong, widespread, collaborations that we have developed and strengthened through this seed corn work.
We are presenting a summary of this public engagement work at the ADR-UK conference in November and have had this work accepted in the International Journal of Population Data Science.

Overall, this project has been invaluable in paving the way for progress in FASD in the UK. We hope to finally address this crucial FASD ‘data gap’ that has been stalling progress in prevention, understanding and appropriate support for too long.