Sweden’s Patient Register: In High Demand

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Sweden’s comprehensive and high-quality system of electronic health records is increasingly in demand from international researchers in the machine learning and AI fields and is also facilitating significant breakthroughs in more traditional medical research.

 

The Swedish National Patient Register (NPR) contains comprehensive lists of data sorted into four groups: patient, geographical, administrative, and medical. Moreover, Swedes are famously accepting of the sharing of their personal data, considering it indicative of a transparent society. This, combined with the nation’s embrace of modern technology, has led Sweden to become one of the world’s most eager adopters of personal microchipping, with little debate about issues surrounding its use.

 

As a representative of Swecare, the export promotion agency for Swedish healthcare and life sciences, recently told us, international actors are starting to take note of the wealth of opportunity that the high-quality and accessible healthcare data in Sweden offers. “Sweden is famous for its long-standing quality registries and biobanks which provide a unique source of health data that can be leveraged for research using machine-learning and AI technology.”

 

“These assets are unique to Sweden and attract foreign researchers, especially from India. India is at the forefront of the development of AI technology and its researchers are interested in Sweden’s data. A lot of them have been able to establish themselves in Sweden and start their own companies,” they noted.

 

The Swedish state, cognizant of the significance of the country’s high-quality electronic health record system, recently pledged SEK 200 (EUR 18.6) million to further develop national quality registers for 2019.

 

A Parkinson’s Breakthrough

Sweden’s comprehensive patient registry is also being used by researchers working on better understanding complex diseases such as Parkinson’s. Through analysis of around 1.7 million health records in Sweden, scientists found that those who had their appendix removed early in life were up to 25 percent less likely to develop Parkinson’s disease – potentially a major breakthrough in proving that the neurodegenerative disease originates in the gut and immune system.

 

The fact that Parkinson’s onset moves so slowly makes it notoriously difficult for researchers investigating the disease. However, in this study, because Sweden’s patient registry is so detailed and has been in place for so long, the researchers could look back decades to see patients who had had their appendix removed and check whether they had subsequently received a diagnosis for Parkinson’s.

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