For several centuries, the Nordic countries have collected information on each of their citizens. There are registries in the region dating to the 1700s, with information on birthplaces, marriages and deaths, among other particulars. Today there are even more registries and linking their data together can provide a detailed record of each individual’s journey through life. This treasure trove of information could be a unique source of insight for Nordic researchers.
The NordForsk session, Nordic Registers and Biobanks: A Goldmine for Precision Medicine Research, also include talks from Camilla Stoltenberg, Director-General of The Norwegian Institute of Public Health, and Professor Paul W. Franks from the University of Lund.
NordForsk’s Nordic Programme on Health and Welfare was launched in 2014 and has a budget of more than NOK 400 million. To date the programme has issued eight calls for proposals and funded more than 20 projects, many of which address opportunities and challenges related to registry research. In 2018, NordForsk introduced a new initiative for projects that use health data for personalised medical treatment.
"Many of the obstacles to expanding and improving health and welfare cooperation across borders are the same, whether we’re talking about biobanks, population registries or clinical studies,” says Special Adviser Maria Nilsson of NordForsk. “Several of our projects look at how to surmount the challenges posed by legal, technical and organisational bottlenecks so that data can be shared across national borders.
The biggest challenge, she points out, is practical in nature, as accessing data in other Nordic countries is highly time-consuming for researchers.
"Today, researchers must apply for ethical approval and access to data in each individual country, then wait for the different institutions to grant permission,” Dr Nilsson explains. “If you want access to data from multiple registries, the waiting time can be many months, or even years. A Nordic project using data from different countries often becomes too complex and time-consuming, so many researchers stick to national data and thus forego new insights. Researchers today also spend a lot of time figuring out whether the variables can actually be used to address their research question.
Dr Nilsson thinks part of the solution lies in closer Nordic cooperation on relevant processes and regulations. The personal privacy of inhabitants and public trust in the authorities and researchers must be maintained at today’s high levels, however. High-quality metadata (information describing other data) is also necessary to make it easier for researchers to interpret the content of registries and determine whether they are comparable.
"When investigating the correlation between the life and health status of the inhabitants, it makes an enormous difference to have source data from 27 million Nordic individuals rather than five million Danes,” she says. “It means we can extract more information about the factors that shape our lives – the education we choose, the diseases we get and what we die of. Increased cross-border data exchange could improve quality of life and health for people across the Nordic region.
Dr Nilsson adds:
"But this does not entail weakening the protection of personal privacy. The Nordic countries have similar approaches to legal, technical and ethical issues, so it ought to be possible to achieve better coordination. The Nordic registries are unique in the world, offering an advantage that must be given priority before it’s too late.
She believes there is vast potential for Nordic added value if a good framework is put in place to accelerate the data exchange processes for research across the Nordic region.
"Once upon a time it was the church authorities that collected information on residents, but today the collection of such data is an integral part of the Nordic welfare society with the help of large-scale data banks and a variety of registries. The combination of this data with national ID numbers for individuals presents unique opportunities to study all kinds of correlations across the Nordic region, such as the late effects of medical treatments or the link between health status and occupation, says Dr Nilsson, before elaborating:
"The NordicWelfAir project, for example, is studying the health effects of air pollution. Researchers will identify which emissions are most harmful to health, where the emissions occur and, with the help of Nordic registries, which diseases they can induce in the population. The results are scheduled to be completed by 2020 and will hopefully contribute to good political decision-making that leads to a decrease in Nordic air pollution levels and reduces the frequency of associated deaths or illness.
"The Nordic countries have gained momentum in registry research, but the train is about to leave the station and unfortunately this is the last train, Dr Nilsson says.
