Archive for category: Oslo Cancer Cluster

This article was originally written in Norwegian and published on our School Collaboration website.

Ullern students helped teenagers in the hospital while learning how to become entrepreneurs.

GLIMT UB, a youth company at Ullern Upper Secondary School, wants to give chronically ill teenagers the activities they need while they are in hospital. The pizza night with the famous Norwegian rappers Arif and Unge Ferrari was a big success, but then the corona pandemic put a temporary stop to the newly started company.

“GLIMT offers teens in hospital different activities, which are planned and carried out by other teens. We offer an arrangement for the hospitals, which is better adapted and more resource-efficient.”

Teenagers who stay in the hospital for long periods of time are often isolated and have few other fulfilling activities in their everyday lives. GLIMT UB decided to do something about this and thought of the idea to arrange pizza nights at the hospital, inviting famous people as guests for the young patients.

The concept was a success and the pizza night with Arif and Unge Ferrari at Rikshospitalet in January 2020 attracted five times as many young patients as other activities. Arif and Unge Ferrari hung out with the teens who are staying in the hospital because of different illnesses. The night was spent eating pizza, playing cards and beading.

“The mother of one of the patients said that we need to come back and arrange this more times. She insisted that this was an important optional activity because it was planned by teens for teens,” said Tyra Kristoffersen.

Tyra has worked in GLIMT UB, together with the other Ullern students Andreas Bjurstrøm, Carl Ruge, Miriam Idsøe and Alexander Floskjer, during the last school year.

Young patients are isolated

“During the age when you have the greatest need to be social and gain new experiences, one group is getting left out of the traditional social framework. Across Norway, there are children and young adults staying in hospitals and, in spite of both internal and external measures, many end up being isolated from the rest of society. The age group 13 to 19 is a very challenging group to reach and they lack adequate activities. To improve the health service in Norway, we need better adapted activities for this age group.”

This quote is from GLIMT UB’s business plan, which awarded the company first place in the category Best Business Plan in the Oslo Championship for Young Entrepreneurs.

The team behind the youth company GLIMT UB gathered at Ullern Upper Secondary School. Photo: GLIMT UB’s Facebook page

The concept of GLIMT is based on young, famous people’s motivation to help young people in a challenging situation, without getting paid for their time.

“If we had paid the celebrities to come, this wouldn’t have worked because the hospitals have such a limited budget. The famous people still benefit from positive mentions in social media and can use the activity to promote themselves if they wish,” Tyra said.

Before the corona pandemic, GLIMT UB had planned several pizza nights at Rikshospitalet, since the first one was such a success.

“We have been in touch with several celebrities, such as Herman Flesvig, Ulrikke Falck and Tix, who were all very positive to participate. Unfortunately, the corona pandemic forced visitation restrictions in place at hospitals in Norway, so we couldn’t arrange more pizza nights than the one with Arif and Unge Ferrari,” Tyra said.

The students behind GLIMT UB still think they have learned a lot.

A valuable mentor

Entrepreneurship is one of many subjects that the students at Ullern Upper Secondary School can choose in their second or third year. The students learn how to start a company and the theory behind what makes some businesses succeed and why other businesses fail.

The students also need to establish and run their own youth company during the course.

The team behind GLIMT UB considered an idea about redesign, but scrapped it when they realised that this was a concept that many youth companies were interested in.

“We started thinking about what is close to our school and of course the hospital is right next door. We discussed with our entrepreneurship teacher Karin if we could think of something in relation to that. We quickly found out that teens in the hospital don’t have many activities. The younger kids get visits from hospital clowns and their own playroom,” Tyra said.

At the Norwegian Radium Hospital, there are however not many young adults admitted. Most teenage patients are at Rikshospitalet and Ullevål.

“Through our mentor Bente, we got in touch with the activity leader for teenagers at Rikshospitalet and Ullevål. He liked our idea a lot, and other people were also positive, so we just had to keep working,” Tyra said.

Mentor Bente Prestegård and the students Andreas Bjurstrøm, Carl Ruge, Tyra Kristoffersen and Miriam Idsøe, standing outside Ullern Upper Secondary School. Alexander Flåskjer is also a part of the GLIMT team, but was unfortunately not present on the day the image was taken. Photo: Elisabeth Kirkeng Andersen

Bente, that Tyra mentioned, is Bente Prestegård. She is a project manager in Oslo Cancer Cluster and one of her many projects is the school collaboration between Ullern Upper Secondary School and Oslo Cancer Cluster.

“I have had a few meetings with the students behind GLIMT. I have specially advised them about how to relate to patients and staff in the hospital, and I helped them with pitch training in advance of the Oslo Championship in Young Entrepreneurship,” said Prestegård.

Prestegård thinks that it is a lot of fun to be a mentor for GLIMT and she is impressed about how driven the students have been and how much they have accomplished, even though the corona pandemic but a sudden stop to the company’s activities in March.

The students also learned a lot from Bente’s advice and are grateful for all the coaching they have received while running the company.

“Bente introduced us to several key people at Oslo University Hospital, which was very valuable for us. She is also very knowledgeable about the economy and has given us a lot of good input on that aspect too,” Tyra said.

Learning in practice

It is June now and homeschooling is fortunately over, but there are still strict visitation rules at Norwegian hospitals because of the pandemic. GLIMT UB is dissolved since the school year is over and the students have gained a sense of what it is like to be a founder.

“It has been fun and educational. We would, of course, had wanted to do more for these teens, but hopefully, the hospitals across the country can be inspired by our idea,” said Carl, the company’s interim manager.

One thing that has been challenging for GLIMT is to find a way to make money out of the idea since the hospitals have limited resources.

“We still had NOK 7 000 left in our budget this year, which we have donated to Oslo University Hospital,” said Tyra.

How can we make clinical trials an integrated part of cancer treatment in Norway so that more patients can gain access to new and better treatments?

We arranged a webinar with key experts and politicians to answer this question. Watch the entire webinar on Youtube:

“The number of patients that get considered to participate in clinical studies in Norway is too low and it is difficult to arrange clinical studies across borders in the Nordics. This is unacceptable, but how can we change it?” This is how the moderator Ketil Widerberg, general manager of Oslo Cancer Cluster, set the scene for our first webinar, which was live-streamed from Kreftforeningens Vitensenter in Oslo.

A visionary plan

The Norwegian Ministry of Health and Care Services has said that clinical studies should be an integrated part of patient treatment in Norway. This is especially relevant when it comes to the advent of new cancer treatments and the fact that the number of clinical trials is decreasing in Norway. The Ministry is now working on a Clinical Studies Action Plan to be completed in 2020.

Maiken Engelstad, Deputy Director General of The Department of Specialist Health Care Services, gave a presentation on its contents so far. An overarching goal is to get more, useful clinical studies to Norway, so that more patients can receive better treatments, and ultimately achieve a more efficient health service.

Engelstad mentioned many important aspects to achieve this. For example, to create more collaborations between the industry and public sector, with NorCRIN as a “one-stop-shop” for clinical studies. Engelstad stressed that Norway needs to build capacity, so that feasibility, recruitment and approval is accelerated. Engelstad also talked about building competency, by including clinical research, gene therapy and artificial intelligence in education. Moreover, Engelstad wants to increase the multitude of different studies, catering to both big and small patient groups, vulnerable patients, assessing both new and established treatments, and conducting the trials both locally, nationally and internationally. 

“We need to look to Norway’s advantages, such as real world data, which can be used from designing the drugs to implementing new therapies in the clinic.” Maiken Engelstad

Engelstad said that there needs to be a national and regional framework in place to achieve this, with regulations, financing, infrastructure and competency. Engelstad finally highlighted that one of the biggest challenges is to achieve a cultural change towards conducting clinical trials in Norway.

The tangle of rules

The legal framework that regulates clinical studies in the Nordics is very difficult to navigate for patients who wish to participate in and for companies that wish to arrange clinical trials. Wenche Reed, Head of Research in The Section for Research, Innovation and Education at Oslo University Hospital, talked about how complicated it is to interpret the regulations. 

“There are many laws to consider when conducting clinical studies. It is not easy to navigate the legal landscape – not even for lawyers!” Wenche Reed

Reed explained that the advent of personalized medicine in cancer is challenging the division between patient treatment and clinical research. Moreover, the ethical and legal framework for handling big data is being challenged, because of new developments using artificial intelligence in diagnostics.

Tearing down the barriers

The introductory presentations were followed by a lively panel discussion, divided into three sections. The first section included a video message from Tone Skår, project manager in VIS Innovation and founder of the MED.hjelper project and #SpørOmKliniskeStudier social media movement. Skår emphasised the importance of informing patients of the possibility of participating in trials and creating incentives for doctors and hospitals to run the trials.

Sigrid Bratlie, Special Adviser in The Norwegian Cancer Society, commented that a cultural change is needed. Bratlie said we need to look at concrete cases to learn how to conduct successful clinical studies in cancer personalised medicine.

Bratlie highlighted that Norway has world-class cancer research milieus, especially in cell therapy, but the total number of clinical trials is dwindling. Europe risks falling far behind the US and China, because of the complicated legal framework.

“The Biotechnology Act is just one small piece of the puzzle. Soon there will be a hearing for the Genetechnology Act. We need to look at the bigger picture and how the different laws interact.” Sigrid Bratlie

The second part of the panel conversation turned to both clinicians and industry for their perspectives. Daniel Heinrich, Senior Consultant Oncologist at Akershus University Hospital and Head of The Norwegian Oncology Association, wants to offer his patients the opportunity to try new treatments, which potentially can be better than the standard treatment. Heinrich highlighted that it is difficult for patients that need to travel to different hospitals and private clinics for testing because the hospitals lack capacity. He said that the directives need to come from above, from hospital management, the Directorate of Health and the politicians.

“It is almost impossible to include patients in studies in other countries now. Often it is difficult to understand why!” Daniel Heinrich

Baldur Sveinbjørnsson, Chief Scientific Officer in Norwegian cancer start-up Lytix Biopharma, has tried to arrange a clinical trial in Norway, but found that it was better to conduct it from a hospital in Copenhagen. When patient recruitment was too slow and costs were mounting every day, Sveinbjørnsson travelled around the Nordics to attract patients. There was great interest, but the differing regulations and processes in the Nordic countries put a stop to recruitment.

“We have started looking towards the US and filed an application to the authorities to conduct our next clinical study there.” Baldur Sveinbjørnsson

Hege Edvardsen, senior adviser in Legemiddelindustrien (LMI), thinks Norwegian companies should be able to conduct their trials in Norway. Edvardsen said we need to establish a “one-stop-shop” for clinical studies in Norway. Edvardsen said that the pharmaceutical industry often turns to the most successful cancer centres and hospitals when placing their clinical trials.

“Dedicated enthusiasts are the ones running the clinical studies, but we need targeted financing, so the people doing the work are acknowledged.” Hege Edvardsen

The final part of the panel discussion included two politicians’ visionary perspectives for the future.

Marianne Synnes Emblemsvåg, politician for The Conservative Party of Norway – Høyre, said she was touched by the ambitious plans in the Action Plan. Emblemsvåg commented that she is an impatient person, but that the bureaucratic process takes time to change.

“We need to market Norway in a way that makes us attractive for clinical trials.” Marianne Synnes Emblemsvåg

Emblemsvåg commented that there are many exciting developments considering artificial intelligence and diagnosing cancer, but that they come with some very challenging ethical considerations.

Tuva Moflag, politician for The Labour Party of Norway – Arbeiderpartiet, agreed that things take time to change. Moflag emphasised that part of the political work is to “clean up” some of the bureaucratic mess and to remove the legal barriers.

“We should have high ambitions for clinical studies, considering that we are a rich country and should assume responsibility for our patients.” Tuva Moflag

Moflag also stressed that there needs to be infrastructure, personnel and financing to complete it. Creating a culture of innovation, so that medical personnel feel they are part of something bigger than themselves.

The webinar ended with some final comments from Engelstad, who had been listening and taking diligent notes to bring with her in her work with the Action Plan going forward.

• Read a summary of the webinar (in Norwegian) at LMI:s website.

We want to direct a special thank you to all the meeting participants, to the organising partners and to everyone who followed the live stream.

Our next meeting in this series will take place this fall. More details will be published on our website closer to the event.

Event organisers: