From the day you are born, Norwegian registries are collecting a number of health data about you. Norway is thought to have one of the world’s best health registries – but it is a challenge for researchers to use it. We sometimes hear that we are sitting on a goldmine, but it’s hard to get the information that could be useful for finding the best treatments possible.
There is a conflict of interest: Scientists wants easy access to several registries, where Datatilsynet wants to put restrictions on use of such data. This was the topic of a conference held by Biomedical Network. The Network builds an arena where scientists from clinic, and biomedical environments meets representatives from the industry and research support to exchange knowledge and establish research-projects with a potential to develop new diagnostics or therapy.
On the 24th of October, close to 100 representatives from relevant academic environments, were gathered to share their side of the case and debate.
The Nordic countries are attractive because we have a good structure for statistics and health economics. Norway has better health registers than Sweden and Denmark. Yet, because of the long waiting times, the Norwegian health registers do not get prioritized in use.
Per Eystein Lønning, Professor in Oncology at the Faculty of Medicine, University of Bergen, tells us about the restrictions of Norwegian biobanks – which makes it hard when they want to research on removing cancer before it spreads. Then they have to cooperate with the US instead.
– It is strictly forbidden to use personal information in Norway, unless the privacy is safeguarded, says Camilla Nervik, Manager of Health Group, Datatilsynet.
Industrial cooperation = financial muscles?
At the end of the meeting there was debate. People were asking why Denmark could do it, but not us. The answer: In Denmark, health registers has always been available.
– How big and unresolved potential is there in this goldmine, asks Jens Andreas Reigstad, Senior Business Developer at Bergen Technology Transfer (BTO).
– 1000-1500 publications are written every year, which is a strong fundament. The next step is to link these to biobanks – this is where the value is added. This can streamline and cut costs, answers Professor Per Eystein Lønning.
Pål Hasvold, Medical Evidence Science Lead at AstraZeneca, calls the health registers “the new oil”.
– You can have a large amount of oil in the ground, but when you have to wait for a year to get the results, you don’t use it. You can get the same results from other countries, in about three months’ time, explains Hasvold.
We need to look at the broad value creation perspective, and not do it to make money.
You might have seen negative headlines in the local news such as “Science data got illegally shared from Bergen”.
– If the trust is gone, we got to start from scratch again, says Marta Ebbing from Norwegian Institute of Public Health.
Giske Ursin, Director of the Cancer Registry of Norway, agrees that this needs to be solved, and wants to know who benefits of the registers data.
What is certain is that someone needs to take a hold of this issue. From cradle to grave – Norway sits on a massive amount of data. This information can be used for the best for the society as a whole, if we only remember to take care of people’s privacy.
Participants in the debate:
- Marta Ebbing – Technical Director, Health Registry of Norway, Norwegian Institute of Public Health
- Camilla Nervik – Manager of Health Group, Datatilsynet
- Giske Ursin – Director, Cancer Registry of Norway
- Per Eystein Lønning – Professor, University of Bergen and Haukeland Unviersity Hospital
- Jesper W. Simonsen – Division Director of Society and Health, Research Council of Norway
- Steinar Thoresen – Medical Director, AbbVie
- Christian Jonasson – Senior Researcher HUNT Research Center, NTNU / Biobank Norway
- Pål Hasvold – Medical Evidence Science Lead, AstraZeneca
- Marianne Synnes (H) – Parliament representative
- Meeting chairman: Clara Gjesdal – Deputy CEO, Haukeland University Hospital
The meeting was arranged by Biomedical Network, and collaboration between Bergen Teknologioverføring (BTO), Haukeland University Hospital and Legemiddelindustrien (LMI).