The purpose of the seminar was to demonstrate the untapped potential for Nordic use of cooperation on health data, and to highlight existing barriers and bottlenecks that pose obstacles to Nordic research based on registry data. The 2018 session was held at the Storting in Oslo.
Representing NordForsk were Special Adviser Maria Nilsson and Professor Jeanette Falck Winther, who presented, respectively, NordForsk’s activities to capitalise on registry-based research and the uniqueness of registries as sources of knowledge, and results concerning the socio-economic consequences of surviving childhood cancer from the NordForsk-funded SALiCCS project.
Introduced by President Michael Tetzschner and Committee Chair Bente Stein Mathisen
Introduced by President Michael Tetzschner and Committee Chair Bente Stein Mathisen
Michael Tetzschner, President of the Nordic Council, opened the seminar, which was attended by more than 80 participants. He pointed to health data research as an area in which the Nordic countries will benefit greatly from closer cooperation.
“We often say that the Nordic countries are small on their own, but together we are a major player,” said Mr Tetzschner. “While this is not always a valid argument, in this area it truly applies. This is why ‘Health technology and patient safety’ is one of the four focus areas identified by Norway in its programme for the Nordic Council presidency.”
“The purpose of today’s seminar is to shine a spotlight on the challenges we face in achieving our goals for patient safety, and to illustrate the added value that enhanced cooperation on health data can provide to the Nordic region.”
Next to speak was Bente Stein Mathisen, Chairman of the Committee for Welfare in the Nordic Region. Her main point was the need to tackle the obstacles that make registry-based research highly time-consuming and what Nordic members of parliament can do to help to eliminate these bottlenecks.
“The rest of the world tends to view us not as individual countries but as a Nordic region,” said Ms Stein Mathisen, “and there are many benefits to promoting ourselves as such a region. I don’t mean we should negate our own nationalities, but we should dismantle unnecessary cross-border impediments that have arisen between us, and work to strengthen mobility between our countries. Our combined 27 million inhabitants provide a good population base for research and development, we have good infrastructure, and we have registries that we should take better advantage of.”
Presentation of NordForsk project
Professor Jeanette Falck Winther kicked off the scientific segment of the seminar by presenting the NordForsk-funded research project “Adult Life after Childhood Cancer in Scandinavia (SALiCCS): Socioeconomic consequences of long-term survival”.
Although the number of cancer survivors among children and young people in the Nordic region has never been greater, more knowledge is still needed about the impacts of childhood cancer on subsequent education, working life and family life. Professor Winther explained how the SALiCCS project plans to use Nordic registries to learn more.
“The use of personal identity numbers and the many registries give us fantastic research opportunities in the Nordic region. This unsurpassed level of detail enables us to track the population from cradle to grave, and merging the data from the Nordic countries gives the analysis statistical strength. This combination creates a platform for research envied by the rest of the world. In addition, Nordic researchers’ access to the registries makes us attractive as partners in international studies.”
“Research at the Nordic level takes time,” continued Professor Winther, “and it takes an especially long time to obtain permission to transfer data between the countries. The legislation in the Nordic countries is not in itself a problem, but problems arise when those who are responsible for the registries in the different countries interpret the legislation differently.”
Losing chances to acquire new knowledge
Maria Nilsson concluded the seminar by giving the Nordic members of parliament insight into what NordForsk has learned from its years of activities targeting Nordic registry-based research. Dr Nilsson thinks part of the solution lies in closer Nordic cooperation on relevant processes and regulations.
“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. Today, researchers must apply for ethical approval and access to data in each individual country, then wait for the different institutions to grant permission. 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.”
Dr Nilsson finished with an appeal to the audience. “Since the Nordic countries all have a similar approach to legal, technical and ethical issues, we must be able to coordinate with each other.”
