Establishing a framework for trusted data sharing between ALSPAC and the South West SDE

The Avon Longitudinal Study of Parents and Children (ALSPAC) has followed around 30,000 participants for over 30 years, collecting a huge range of health, lifestyle and biological data across two generations. Many of these participants live in the area covered by the South West Secure Data Environment (SDE) – a new system that securely brings together health and population data from across the region. 

ALSPAC already links its data to NHS and other administrative records under strict governance processes. However, there is growing interest in bringing datasets together in centralised, secure environments like the South West SDE to make research faster, more efficient and more collaborative.  

This presents an exciting opportunity for research in the region. However, it also raises important questions about how data sharing could work in practice, while maintaining participant trust and complying with strict data governance and consent requirements. 

Project aims

This project will explore what would be needed for ALSPAC data to be shared safely and effectively within the South West SDE.  

Using eating disorders as an example topic, we will: 

• Map out how the data could flow into and be used within the South West SDE 

• Identify what governance steps are required 

• Explore what technical infrastructure and staff support would be needed. 

What we hope to achieve

We aim to: 

• Understand the technical, legal and governance requirements for sharing ALSPAC data within the South West SDE 

• Develop a potential “pipeline” showing how ALSPAC data could be securely integrated 

• Identify researcher needs for software, computing power and training 

• Update or create standard operating procedures to support future projects 

• Estimate the resources and costs required 

Ultimately, this work will provide a clear roadmap for safe, efficient data sharing. This will help future research collaborations benefit from ALSPAC’s rich data while maintaining the highest standards of participant trust and data security.