Making a unique national resource more accessible
Health registries contain a vast treasure trove of unique and valuable data; they are a national resource that give Norway a competitive advantage in a knowledge-based economy.
Identication of a national resource of strategic importance
Norway has a tradition of maintaining numerous large, longitudinal, population-based databases, biobanks and national health registries. It is a unique combination of resources that together form a strategically important resource for internationally and nationally relevant research of high quality and interest. The unique research possibilities were highlighted in the 2011 evaluation of medical sciences conducted by the Research Council of Norway (RCN).
A team of external evaluators determined that the Norwegian Health Registries were a unique, world-class resource, and that research based on this information would have international impact. They concluded that the registries were an important national asset that should be fully utilized, maintained and protected. However, they also highlighted the need for better infrastructure around the various registries.
RCN funds a national infrastructure
As a follow-up to the evaluation’s conclusions and recommendations, RCN prioritised funding for long-term financial support to build a secure and accessible infrastructure around this important data. So it was that the Health Registries for Research Project (HRR) was awarded funding. The project has been in a start-up phase and activity has been growing since 2015. It is based at the Department of Global Public Health and Primary Care (IGS), at the Faculty of Medicine and Dentistry, University of Bergen (UIB) and led by Professor Stein Emil Vollset.
What is a health register?
A health register contains health data about an individual. Registration of health data is very strictly regulated in Norway. There are different kinds of health registers, some are listed in the Fact Box. HRR is concerned with the mandatory health registries, which are often referred to as the central health registries)
Potential power of registry-based research
One of the great strengths of registry-based research is that it can provide information about a health issue over a long period of time, and in large numbers of people in particular groups of people, in people having other registry-recorded conditions, etc.. This last point underlines another great strength opf registry-based research: information from different registers can be linked together. For example, information from the Birth Register about premature births can be linked to health registers recording other health conditions to give information about their follow-up later in life. In particular, this question has actually been the subject of research and it was shown that premature babies do have a higher risk for developing other health conditions later in life.
How to access registry data?
One of the issues that has hindered registry-based research is that the information is difficult to access. Security is of primary concern. In addition, access and security are not standardised between registries. The bureaucratic processes that ensure adequate security are a significant hindrance to research access. In addition, many researchers have inadequate background in data-handling skills.
One entry portal
The main goal of the Health Registries project is to make the health registers more accessible for research. This increased accessibility must be accomplished while ensuring that personal data is protected.
As currently, each register is different, a first approach for simplifying access is to standardise information and documentation about each register. Better and more standardised documentation will help researchers to understand the kinds of questions that they can answer with registry data.The project’s administrative leader , Anja Ariansen, explains that the project aims to have one entry portal. She has first-hand knowledge of the challenges are rewards involved in registry-based research. She used health registry data in her PhD work.
Ariansen explains that one of the 3 project work packages (WP) based at UiB will deal with biostatistics. Led by Rolf Terje Lie, this WP will develop initiatives to help researchers make better use of registry data – and to better understand what kind of questions they can address with registry data. The partners involved in this WP will develop courses, support information, software that will give researchers more tools for registry-based research.
It is critical that the health registry data be secure. While the security at the server level currently seems to be sufficient, the challenge is to develop access protocols and to train researchers in their use. The optimal approach seems to be a log-on / log-off access to 2 centralised servers, one in Oslo and one in Bergen. This approach avoids personal data leaving the secure servers. Ariansen explains that dialogue is being established between all HRR partners, Statistics Norway and RCN, among others.
Read more about HRR activities, project goals and milestones on the HRR web site.
Links (in Norwegian)
Post-doc Astanand Jugessur underlines that proper tools, such as the data programme HAPLIN, enable researchers to extract gold from the enormous amount or raw information contained in the Health Registries. Read the article (in Norwegian)
When the funding for the Health Registries for Research project was awarded, UiB Rector Dag Rune Olsen underlined how important such support was for these massive infrastructures. He stressed that support for such platforms will enable Norway to better compete in the global, knowledge-based economy. Arvid Hallén, the Administrative Director of the Research Council of Norway, agreed. Read the article (in Norwegian)
Communication Advisor at the Faculty of Medicine and Dentistry, Marion Solheim, wrote about “Setting the Health Registries on the Map” (in Norwegian)