It is a wonderful thing to have access to data which are not available anywhere else in the world. It is like being entrusted with a treasure chest. However, it also raises numerous issues about how to make best use of this access.
‘And that’s precisely the challenge I’m facing. I aim to try to develop some analytical methods able to handle both health data and social data at the same time, in order to acquire new knowledge about psychiatric disorders,’ says Bjarni Vilhjalmsson.
He is a senior researcher at the National Centre for Register-based Research at Aarhus University and also one of the nine exceptionally talented scientists who received a five-year research grant in 2020 in the form of a Lundbeck Foundation Fellowship.
The treasure chest Bjarni Vilhjalmsson will be working with is the database of the Lundbeck Foundation Initiative for Integrative Psychiatric Research, better known as iPSYCH. Since it was established in 2012, the Foundation has provided this research project with funding worth more than DKK 360 million.
iPSYCH gives selected researchers access to large volumes of information in the form of anonymised health data, social data and details of the DNA of 130,000 Danes born between 1980 and 2005.
Around 90,000 of the 130,000 individuals have received treatment at psychiatric hospitals. The remaining 40,000 act as healthy controls when the iPSYCH researchers study the data to identify exceptional combinations of genetic variations and environmental conditions which could shed light on mental disorders such as ADHD, depression and schizophrenia.
‘It really is a unique database,’ says Bjarni Vilhjalmsson who is a mathematics and computer science graduate, specialising in genetic statistics:
‘The iPSYCH database contains the anonymised health data and social details of 130,000 individuals, and it also gives access to some similar data about the individual’s parents, siblings and grandparents. Without ever discovering the person’s true identity, you can see details of each individual’s hospital admissions, medication use and social details such as level of education and income, from the day they were born and onwards. You also have access to the person’s DNA profile. This information comes from the blood spot sample taken from their heel just after birth. No other database in the world – not even the British Biobank – can provide a ‘package’ of this kind.’
However, although the iPSYCH database has existed for some years now, and has provided a wealth of important results on mental disorders, researchers have not yet developed analysis tools able to harvest vast volumes of new knowledge from the data of these 130,000 people by looking at health data, DNA data and social data simultaneously. Bjarni Vilhjalmsson continues: ‘This type of method has not yet been extensively researched, and I’ll be starting on that now with the scientific team I’ll be setting up at the National Centre for Register-based Research with the funding from my fellowship.’
The aim of the analyses Bjarni Vilhjalmsson wants to conduct is basically to identify hereditary and environmental factors which could increase a person’s risk of developing a psychiatric disorder. New knowledge of this kind can be useful for developing strategies to prevent the outbreak of mental illness in people in high-risk groups. It can also be helpful when designing new drugs or other therapies for mental disorders.