Sharing data among the Nordic countries
The Nordic countries consist of five nations, each with unique data registries containing valuable, reliable information, compiled over many years, on the health and welfare of their respective populations.The Nordic registries cover a combined population of over 26 million people. A number of the registries have been storing information for decades. They contain data on illnesses, economic and social conditions, family structure and migration.
This represents a rich lode of information for research, but far too few researchers have mined the “gold” it holds.
Data should be shared
But this situation is about to change. On 5 March, NordForsk convened a group of experts in the Rosenbad Building in Sweden’s government complex in Stockholm to discuss how to expand the use of the Nordic data registries.
Politicians, government representatives, researchers, research funders and other experts from the five Nordic countries all agree that each on its own is a small player in this context. If researchers are to use this resource constructively, the data needs to be shared among the Nordic countries. This will provide larger data sets that can lead to extremely interesting comparisons between the Nordic countries on mortality, illness, social factors and more.
In her opening statements, Olivia Wigzell, Deputy Director-General of the Swedish Ministry of Health and Social Affairs, said, “Our registries are quite similar – as are our welfare models. So research using the Nordic registries holds many benefits for our countries.”
Five nations, five systems
The situation today is one in which five countries are using five different systems and sets of regulations to register and use data.
Will it even be possible in practical, legal and ethical terms to share data between the Nordic countries? And how will it be possible to ensure protection of personal data and adequate safeguards for this information while taking advantage of the unique research potential inherent in the registries?
A matter of trust
Anders Geertsen, Head of the Department of Knowledge and Welfare at the Nordic Council of Ministers, believes we need to ask why the Nordic registries are of such high quality. Is it because Nordic residents so dutifully carry out whatever the authorities ask?
“I don’t think so. I think it is because our society is founded on trust. We have confidence in one another and in our authorities. We trust each other so much that we feel certain that the information we pass on to our doctors, schools and places of employment will not be used improperly.”
“This sense of trust is lacking in many societies. I believe trust is the foundation for our entire welfare state,” states Mr Geertsen.
According to Mr Geertsen, the fundamental sense of trust which has created Nordic welfare societies is precisely what has made it possible to compile such large data registries. Use of these data in research across the Nordic borders will now help to make the welfare states even better.
A NordForsk initiative
Gunnel Gustafsson, Director of NordForsk reminded the workshop participants that NordForsk has been charged with facilitating Nordic research collaboration that will give added value to national initiatives. Registry-based research is an obvious way to achieve this. Previous reports have pointed out that the registries represent unique potential research infrastructure that remains untapped. Both the quality of the registries and their relevance to research will improve if we share the tasks and generate larger data sets, Dr Gustafsson points out.
This is an issue of great importance to NordForsk.
“But we understand that it is a complicated area to navigate. This is why we focused our activities through the NORIA-net on Registries initiative, as a means of identifying obstacles to collaboration and proposing ways to overcome them.”
The opportunities greatly outnumber the limitations, Dr Gustafsson believes. Things are already developing in a positive direction. One example is The nordic biobank initiative (BBMRI Nordic), which is designed to strengthen Nordic biobank research.
“By collaborating we can also improve our position on the research front, both in Europe and internationally,” she states.
A Nordic framework
The NORIA-net working group proposes harmonisation in the Nordic statutory framework in order to facilitate data-sharing across national borders.
The working group recommends that permissions granted by one committee on research ethics should be accepted as mutually valid in all Nordic countries and that only one pre-authorisation from the relevant Data protection supervisor should be necessary for each research project.
According to Associate Professor Marjut Salokannel, who presented the preliminary results of the working group’s activities, it is up to the national statistical institutes in each country to ensure that their data are adequately anonymised or pseudonymised before being shared.
Afraid of losing trust
Statistical institutes, national data protection authorities, and committees on ethics were all represented in panel discussions held during the workshop in Stockholm. All recognise that the registries and biobanks constitute an invaluable tool for researchers. But the same can be said for the general population’s trust for the research community.
“Lack of confidence is on the rise. Our interviewers have noticed that informants are increasingly concerned about how the information they provide is going to be used,” said Stefan Lundgren, Director General of Statistics Sweden.
In the area of statistics, data sharing is moving in a positive direction in a number of Nordic countries. For example, Denmark, Sweden and Norway have taken steps to facilitate access to data for researchers by making it easier to use micro-data.
The representatives of the various statistical institutes are still concerned about the potential difficulties national agencies could face in exchanging data across national borders. They stressed the fact that they are dependent on maintaining one hundred per cent control over their own data.
“All our work could be compromised if someone were to misuse our data. The population would lose faith in us and our databases are built upon this very trust,” stated Lars Thygesen from Statistics Denmark. Bjørn Henrichsen, Director of Norwegian Social Science Data Services (NSD) understands why the statistical institutes are cautious. But he is convinced it is possible to look at the systems in use today and find new ways of sharing data without undermining the population’s confidence in data collection in the Nordic countries.
A secure framework is key
It is the responsibility of the data protection authorities of each Nordic country to safeguard the integrity of research project participants.The data protection authority representatives were not able to provide any evidence of serious misuse of registry data by researchers. But most countries have experienced unfortunate incidents that make it clear that abuse of registry data can occur. It is therefore essential to have a clear framework in place.
Salvör Nordal, Director of the Centre for Ethics at the University of Iceland and member of the NORIA-Net on Registries working group agreed:
“Our ambition is to create such a good framework for researchers that ethical considerations are not viewed as an obstacle, but as an integral part of carrying out quality research. Proper management and infrastructure are the keys to establishing good systems for sharing data in a manner that satisfies ethical and legal considerations,” she added.
Unethical not to conduct research?
Markus Perola, professor at the National Institute for Health and Welfare in Finland, pointed out that researchers, too, take ethical questions very seriously.
“There is a tendency to believe that the population needs to be ʻprotected’ from devious researchers. In all honesty, that’s not how I see myself or my colleagues. We are also concerned with questions relating to ethics, such as obtaining the informed consent of research participants. The last thing we want to do is to undermine trust in research.”
“We also need to remember that sometimes it may be unethical not to conduct research to generate knowledge to help people, when it can be done by using accessible data that already exists."
Report in 2013
The input from the workshop will be compiled and used in the further efforts of the NORIA-net initiative. The working group expects to submit a report with recommendations to the NordForsk board towards the end of the year.
“We hope to move from ideas and knowledge to action in this area soon,” concluded Gunnel Gustafsson.
Text: Siw Ellen Jakobsen
Photo: Anne Riiser
Download the summary, agenda and presentations from the meeting here:
Agenda Nordic Expert Meeting 5 March Stockholm
Nordic Data Sharing Framework – A Legal perspective Marjut Salokannel, LL.D. Docent, Independent Consultant
Nordic Populations - Juni Palmgren
Using Nordic registers in concert final Jørn Olsen, MD, PhD, Professor of Epidemiology and Social Medicine, Institute of Public Health, Aarhus University