Emma Gordon, PhD
Director of the ADR UK programme, ESRC
IPDLN Co-Director 2021-2022
Q: What’s your background?
A: I studied zoology for my undergraduate degree, then completed a PhD on bird flight kinematics. While intellectually interesting, having my children during my PhD studies challenged me to think what I could do as a career that would give a bit more back to society than “just” a better understanding of how birds fly. So, after my PhD I completed a Masters degree in public health, nutrition and physical activity. From there, I did a post doc on the Avon Longitudinal Study of Parents and Children (ALSPAC), looking at the mental and physical impairments that children in that cohort had been diagnosed with by the time they were teenagers. That was invaluable, as it gave me firsthand experience of applying to access health data for research.
Q: How did you get into the linkage space?
A: After completing my post doc, I joined the Office for National Statistics (ONS) as a health analyst, eventually leading the team that produced all the health-related National Statistics publications in ONS. We also supported researchers who wanted access to this data for their own research. This is where I learned a range of different methods for linking, cleaning, and analysing a range of population-level health and administrative datasets. I also learned about the legal frameworks that allowed us to facilitate wider access to the data. A perfect role to prepare me for my current one!
Q: What was some of your early linkage work? What are you working on now?
A: My first data linkage publication was based on my ALSPAC research, linking health data with ALSPAC study data to report on the prevalence of autistic spectrum disorders in this cohort: Prevalence and characteristics of autistic spectrum disorders in the ALSPAC cohort – Williams – 2008 – Developmental Medicine & Child Neurology – Wiley Online Library. My role as Director of ADR UK is now as a commissioner of data linkage programmes. One recent highlight is the Data First: Cross Justice System linkage, which connects Ministry of Justice data from the civil and family courts with different areas of the criminal justice system. This gives researchers an unprecedented opportunity to understand cross-cutting questions about the overlaps and intersections between users of services in different justice jurisdictions: Data First: Cross-Justice System – England and Wales – ADR UK. Another is the Education and Child Health Insights from Linked Data (ECHILD) dataset, which includes linked records for around 20 million children and young people, to better understand how education affects children’s health and how health affects children’s education: Education and Child Health Insights from Linked Data – England – ADR UK.
Q: How did you get involved with IPDLN?
A: Almost by accident! Dr Merran Smith, Director of IPDLN during 2019 – 2020 was looking for a team to hand the baton over to, towards the end of her tenure. Unfortunately for her, many of the health researchers around the world were too busy to consider taking this on, as they were so involved supporting the pandemic response in their countries. While the ADR UK data infrastructure teams were also heavily involved in this, Prof Chris Dibben from ADR Scotland and I were happy to take on the directorship of IPDLN, which culminated in the 2022 IPDLN conference in Edinburgh.
Q: How do you see the future population data linkage?
A: The ADR UK model of funding the creation of new data linkages is to work with data owners and researchers up-front on data governance, cleaning, and linkage, so that de-identified, research-ready datasets can be deposited in one of our trusted research environments for any researcher to apply to access. Many other countries also use this model, as it is scalable and sustainable, and allows researchers to learn from and build on research that has been done previously. In the UK, this model is still not in place for all datasets across all topics, but I really hope to be able to promote the value of this as a way of building trustworthiness with the public, data owners and researchers in how we can securely open up access to this data for research.