Biobank Norway coordinates Norwegian biobanks with the health industry to ensure that the valuable biosamples are used to develop new, breakthrough treatments.

How will biobanks accelerate cancer research?

Image of taking tests in the lab.

Biobanks ­– the powerful tools in cancer research you may have never heard of.

 

Biobank Norway is a national research infrastructure that comprises all public biobanks in Norway and represents one of the world’s largest existing resources within biobanking. They are also a member of Oslo Cancer Cluster, through NTNU, and represent an exciting initiative in the endeavour to develop precision medicine.

 

A biobank is a storage facility that keeps biological samples to be used for medical research. The samples come from population-based or clinical studies.

 

Christian Jonasson, seniorforsker ved NTNU.

Christian Jonasson, seniorforsker ved NTNU.

Christian Jonasson, the Industry Coordinator for Biobank Norway, connects businesses with Norwegian biobanks to accelerate medical research. He said that more biobanks now work with the health industry and benefit from added value in the process.

“It is the health industry that will ultimately bring new therapies to patients.”
Christian Jonasson

Biobank Norway has developed several strategic areas for Norwegian biobanks. They have built automated freezers for secure long-term storage, with advanced robotised systems that can retrieve barcoded biological samples. They have initiated new biobanks, established new IT systems and also developed policies for public-private collaborations. Also, they have contributed to strategic processes that promote increased utilization of Norwegian health data, including the national Health Data Program.

Ultimately, Biobank Norway aims to facilitate collaborations between the global health industry and Norwegian biobanks to accelerate innovation in the life sciences, disease prevention and treatment.

“Biobanks are one of the most important tools in precision medicine.” Christian Jonasson

 

Biosamples may be used for important, life-saving cancer research. For example, to develop new immunotherapies, such as T cell therapy. Photograph by Christopher Olssøn

Biosamples may be used for important, life-saving cancer research. For example, to develop new immunotherapies, such as T cell therapy. Photograph by Christopher Olssøn

 

A competitive edge

Norway has been collecting biological samples for the last 30-40 years. For example, one of the world’s largest birth cohort studies, the Mother and Child study (called MoBa) was initiated in 1999. It included 100 000 newborns with mother and father, which totalled over 285 000 participants over a ten-year period. There are numerous other Norwegian health studies, which have involved hundreds of thousands of people, such as the HUNT study and the Tromsø study.

Moreover, the Norwegian Radium Hospital have collected countless valuable samples from cancer patients over the years from both regular clinical care and from clinical research studies. Hospitals across Norway also continually collect and save diagnostic samples, which may be used for medical research at a later stage.

The number of biobanks and the rigorous collection of clinical data in health registers in Norway represent unique assets for medical researchers.

“Norway has a competitive edge on its health data infrastructure.” Christian Jonasson

 

Sharing the data

However, Jonasson also points out that the health registers in Norway are too fragmented. To combat the problem, Biobank Norway are helping the Norwegian Directorate of eHealth to develop a Health Data Program. The digital platform, called the Health Analytics Platform (HAP), will collate copies of relevant data from the various health registers, providing a single point of easy access for researchers.

Biobank Norway also has a long-term vision to collect all biobank data and health data in a common platform. This is a necessary step to unleash a larger national precision medicine initiative. First, they want to organise the data from the four largest population-based cohort studies in one place. In a couple of years, this database would hopefully include 400 000 people, which is a very attractive cohort for medical research.

“We need to attract leading actors from the international health industry and Norwegian start-ups in real collaborations with biobanks.” Christian Jonasson

Important medical research is already being conducted in biobanks across Norway. Jonasson said that there now needs to be a plan to market Norwegian health data and biobanks internationally to spur innovation further.

 

Image of DNA spiral.

Biosamples are also used for sequencing of the human genome, to develop more precise diagnosis and treatment of cancer.

 

The hidden key

To unlock the potential of biobanks, the biological samples need to be analysed and converted into meaningful data, which can be an expensive and laborious process.

Finland, for example, has begun to collect biological samples from 500 000 individuals. One single database holds all phenotypic data, such as diagnosis and treatment, and all genotypic data, which is the mapping of the human genome.

In the UK, there is the Genomics Project, which has already sequenced the DNA (the coded parts of the human genome) of 100 000 patients. The UK Biobank are aiming to sequence the DNA of half a million brits.

Jonasson hopes that such ambitious initiatives will be imported to Norway to build the biobank infrastructure further and provide meaningful data for medical research. He adds that public-private collaborations will be key to drive and fund such large scale initiatives.

Biobank Norway is currently in the process of extending into its third phase and aims to continue to improve the biobanks, the partner institutions and global research collaborations in the future.

 

  • Do you need help with your research and innovation project using biobanks in Norway?
    E-mail Christian Jonasson.
  • For more information, please visit the official website of BioBank Norway.

 

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Kronikk: Dine helsedata kan styrke helsenæringen

Ketil Widerberg, daglig leder i Oslo Cancer Cluster.

This opinion piece was first published on 9 May 2019 in Dagens Medisin, by Ketil Widerberg, General Manager at Oslo Cancer Cluster, and Christian Jonasson, Senior Adviser at NTNU. Both are also members of a work group for innovation and business development for the Health Data Program for the the Norwegian Directorate of eHealth. Please scroll to the end of this page for an English summary.

 

Vi får nye forretningsmodeller innen helse som er basert på digitalisering og persontilpasset medisin. Her kan Norge virkelig lede an!

Christian Jonasson, seniorforsker ved NTNU.

Christian Jonasson, seniorforsker ved NTNU.

Ketil Widerberg, daglig leder i Oslo Cancer Cluster.

Ketil Widerberg, daglig leder i Oslo Cancer Cluster.

HELSE BLIR digitalisert og medisin blir tilpasset den enkelte pasienten. Dette er to megatrender som vil endre forretningsmodellen for helseindustrien. Forrige uke kom Stortingsmeldingen om nettopp helsenæringen. Den åpner for store muligheter for Norge.

I bilindustrien erstatter gradvis digital mobilitet den tradisjonelle boksen på fire hjul. Et eksempel er at Tesla blir verdsatt høyere enn tradisjonelle bilprodusenter blant annet for sin evne til kontinuerlig datainnsamling fra bilene. I helsenæringen vil vi se det samme.

 

NYE MODELLER. Med digital persontilpasset medisin vil nye forretningsmodeller vokse frem. Vi ser eksemplene daglig: Roche, et globalt legemiddelselskap, har nylig kjøpt opp helsedataselskapet Flatiron. Oppkjøpet gjorde de for å kunne utvikle nye kreftbehandlinger raskere, for nettopp tid er viktig for kreftpasienter som kjemper mot klokka. Et annet legemiddelselskap, AstraZeneca, har ansatt toppleder fra NASA. Norske DNVGL, som tradisjonelt har jobbet med olje, gass og shipping, har nå helsedata som et satsingsområde.

Helsemyndigheter erkjenner også endringen mot mer datainnsamling. Legemidler blir mer målrettede og brukes på stadig mindre undergrupper av pasienter. Dette utfordrer hva som er nødvendig kunnskapsgrunnlag for å gi pasienter tilgang til ny behandling. Mens det i dag er kunnskap om gjennomsnitt for store pasientgrupper som ligger til grunn for beslutninger om nye behandlingsmetoder, er det med persontilpasset behandling nettopp viktig å ta mer hensyn til individer og små undergrupper. De amerikanske helsemyndighetene (FDA) har derfor lagt frem retningslinjer for hvordan helsedata kan brukes som beslutningsgrunnlag for nye legemidler.

 

NORSKE FORTRINN. Legemiddelverket i Norge gir uttrykk for at de også ønsker å være i front i denne utviklingen – for også de ser at helsedata gir bedre beslutningsgrunnlag.

Hvordan kan så Norge lede an? Norge har konkurransefortrinn knyttet til et sterkt offentlig helsevesen, landsdekkende person- og helseregister og biobanker som kan knyttes sammen gjennom våre unike fødselsnummer. Dette er få land forunt! Derfor kan vi utnytte dette konkurransefortrinnet for å ta en posisjon i den store omveltningen av helsesektoren og helsenæringen.

Nedenfor følger noen forslag som vi mener vil styrke Norges stilling.

 

PLATTFORM. Vi kan starte med å lage en norsk dataplattform. Selskap leter globalt etter helsedata av god kvalitet. La oss utvikle en dataplattform hvor helsedata er raskt og sikkert tilgjengelig for norske og utenlandske aktører. Et eksempel er helseanalyseplattformen. Her må data gjøres tilgjengelig for alle aktører og for alle legitime formål. Samarbeidsmodeller må utvikles som sikrer at verdiskapingen blir i Norge og pasientene får bedre behandling.

Vi kan utvikle bedre økosystemer. Verdiskapingspotensialet for helsedata ligger i skjæringspunktet mellom offentlig og privat. Dagens offentlige forvaltere av helsedata må derfor samarbeide tettere med norske oppstartsbedrifter og internasjonale aktører.

 

INNSYN. Vi kan bruke personvern som konkurransefortrinn. Hver og en av oss eier våre egne helsedata. Derfor er det viktig med digitale plattformer som gir oss innsyn i egne helsedata.

Hvordan vi kommer til å bruke helsedata om få år, er vanskelig å forutse, akkurat som det var vanskelig å forutse hva konsesjonsutlysningen for oljeutvinning i 1965 ville føre til. Historien viser imidlertid at slike avgjørelser kan ha stor betydning for fremtidens verdiskapning i Norge, og for pasienter i hele verden. La oss derfor ikke overlate til tilfeldighetene hva vi i Norge gjør med våre helsedata.

 

 

English summary:

Digitalisation and precision medicine are influencing emerging business models in the health industry. It is time for Norway to lead the way!

As precision medicine develops, data gathering becomes ever more important. Instead of relying on results from a big patient group, cancer researchers are using big data to find out how treatments can be customised for small patient groups and individual patients.

Norway has a competitive advantage on health data: thanks to its strong public health sector, national health registers and biobanks that can be connected to unique personal ID numbers.

We suggest creating a common platform for Norwegian data, where high quality data can be accessed securely by legitimate national and international companies. Through collaborative models, we can ensure that the medical breakthroughs stay in Norway and benefit the patients. We need to develop better ecosystems that inspire simple collaboration between international key players, Norwegian start ups and the public agencies that handle health data.

Data privacy can be used as an asset. If we ensure everyone has complete access and insight into their own personal health data, people can be empowered to share it for the common good.

The decisions we make today will have great ramifications for the future value creation in Norway and for cancer patients across the world. We should not leave it up to chance.

 

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Jeg vil gjerne legge lista høyt og foreslå en felles database for data fra kliniske studier, hvor både firmaer og myndigheter har tilgang til helsedata umiddelbart etter at hver pasient har fått sin behandling, skriver Ketil Widerberg.

Hvordan gjør vi våre mest intime data til gull?

Ketil Widerberg, general manager, OCC

The following opinion piece was written by Ketil Widerberg, General Manager at Oslo Cancer Cluster, and published in Aftenposten on 1 May 2019. It is a response to an opinion piece written by Nikolai Astrup, the Norwegian Minister of Digitalization, which was published on 22 April 2019. The texts are only available in Norwegian, but a short summary in English is available at the bottom of this page.

 

Helsedata er en voksende gullåre, men vi kan ikke grave i den uten videre.

 

I Aftenposten 17. april svarer digitaliseringsminister Nikolai Astrup (H) på en appell om våre verdifulle data.

Astrup påpeker at data ikke kan sammenlignes med olje, for det er ikke staten, men hver og en av oss, som eier våre egne personopplysninger.

Det gjelder i høyeste grad de mest intime av våre data: helsedata.

 

En gullåre av data

Helsedata er en voksende gullåre, men vi kan ikke grave i den uten videre.

Hadde vi ikke først bygd opp beskyttelse av norske data og kompetanse, ville ikke prosjekter som DoMore blitt til.

Forskerne i DoMore bruker avansert bildeanalyse for å gi mer presise kreftprognoser. Samtidig ville ikke prosjektet eksistert uten internasjonale data og kompetanse.

For næringen som jeg jobber i, helsenæringen, er spørsmålet hvordan vi skal unngå å falle i digitaliseringsfellen. Der har mediebransjen landet.

Facebook og Google får all verdens data gratis gjennom samtykke og tar dermed livsgrunnlaget fra tradisjonelle aktører.

 

Trenger god strategi for kunstig intelligens

For norsk helsenæring blir de to strategiene som digitaliseringsministeren snart lanserer, digitalisering i offentlig sektor og kunstig intelligens, svært viktige. I en strategi for offentlige data oppfordrer jeg derfor til at fremskritt innen presisjonsmedisin tas med.

Da Kreftregisteret ble etablert på 50-tallet, forsto ingen den fulle nytteverdien av et slikt register. I dag tiltrekkes forskere og bedrifter fra hele verden for å få bruke data derfra.

Det viser hvorfor vi også i dag bør samle inn mer helsedata enn vi kan dra nytte av umiddelbart.

Hvordan finner vi balansen mellom god bruk av helsedata for å skape næring og rå utnyttelse av store firmaer? Her trenger vi en god strategi også for kunstig intelligens, som tar inn over seg denne balansegangen i helsedata.

Kunstig intelligens gjør presisjonsmedisin mulig på et helt annet nivå enn vi er på i dag, med mye høyere presisjon i behandlingen.

 

Ressurs for pasienter

For fremtidens presisjonsbehandling er helsedata ressursen vi må samle på. Vi må samle inn helsedata som gjør behandlingen bedre for neste pasient. Og vi trenger en struktur av dataene der både firmaer og myndigheter har tilgang til dem.

Jeg vil gjerne legge lista høyt og foreslå en felles database for data fra kliniske studier, hvor både firmaer og myndigheter har tilgang til helsedata umiddelbart etter at hver pasient har fått sin behandling.

Dette kan bidra til raskere tilgang til ny behandling og bedre oppfølging av pasienter med sykdommer som kreft.

Data former kreftbehandling og skaper nye tilbud til pasienter. Hvordan sikrer vi verdien av dataene? Skal vi gi dem bort for å bygge forskning og industri, skal vi ta så mye penger som vi kan for dem, eller skal vi prøve å finne på noe midt imellom?

I arbeidet med de nye strategiene bør våre mest intime data bli diskutert – med sikte på å skape verdi og næring av dem.

 

 

Short summary in English:

The question Astrup raised in his opinion piece concerned how data sharing can be improved across the public sector in Norway.

Widerberg responds by highlighting how we can make use of our health data to create added value and a successful health industry, without allowing large multinational corporations exploit the data freely.

Artificial intelligence makes precision medicine possible on a much higher level than today. We need to collect health data in order to improve treatments for future patients.

Widerberg therefore proposes a database where health data from all clinical trials is made available to both private and public bodies. This would contribute to making better treatments available sooner and provide better follow-up to patients suffering from diseases, such as cancer.

 

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Oslo Cancer Cluster's General Manager Ketil Widerberg at the EHiN conference in 2018.

The e-health meeting place

Oslo Cancer Cluster will co-power the conference E-health in Norway (EHiN).

– This is a natural continuation of the work we do in digitalisation, for a better understanding of cancer and better patient treatment, said Ketil Widerberg, General Manager of Oslo Cancer Cluster, at EHiN 2018.

The Norwegian Ministry of Health and Care Services (HOD) and ICT Norway started a collaboration on creating a national meeting place for e-health. ICT Norway launched the first EHiN conference five years ago. Oslo Cancer Cluster is happy to announce that we are now one of the three stakeholders in this yearly conference, together with ICT Norway and Macsimum.

EHiN attracts a large audience from Norwegian government and business. The speaker in this picture is Christine Bergland, Director at the Norwegian Directorate of eHealth (NDE).

Norwegian e-health  
EHiN 2018 took place in Oslo Spektrum and was the biggest meeting place for actors in the public and private sector working with e-health in Norway. The conference had 150 speakers and 1300 participants. EHiN 2019 will be the 6th year of the conference.

What happened at EHiN 2018?

 — EHiN is an important meeting place for public and private actors, and for academia and business. This is a natural prolongation of the many meeting places Oslo Cancer Cluster is always working to establish and preserve, Ketil Widerberg says.

Digital technologies are part of what drives innovation to the maximum benefit of cancer patients. Widerberg is certain that e-health will change the way we understand and treat cancer in the future.

– E-health is part of the matrix for how we give the right medicine to the right patient at the right time, meaning precision medicine. One example of what we specifically do in this area, is a recent project we have been part of, called PERMIDES.

An e-health success story
From August 2016 until August 2018, Oslo Cancer Cluster together with five other European clusters in medicine and ICT, was managing a Horizon 2020 EU project called PERMIDES. It is a European e-health success story in bringing together biopharma and IT sectors.

D.B.R.K Gupta Udatha at the EHiN conference in 2018. Dr. Udatha was the project manager for PERMIDES at Oslo Cancer Cluster.

D.B.R.K Gupta Udatha is Director (Digital and EU) at Oslo Cancer Cluster. He has been instrumental in PERMIDES and explains why the project has had such a positive effect on the small and medium sized enterprises (SMEs) it has worked with. 

PERMIDES was a project to anchorage digital transformation across SMEs in biotechnology and pharmaceuticals. We aimed to see where the biopharma companies were lacking digital infrastructure and where the ICT companies could bring digital skills to make sure that the biopharma companies were up to date, Dr. Udatha said at EHiN 2018.

The project created matchmaking opportunities between these two different categories of companies and was awarded EUR 4.8 million from the EU’s Horizon2020 programme. It addressed specific challenges for SMEs to go digital with a precision medicine product.

Read more bout the PERMIDES project here.