Kick off was January 29, at The Royal Netherlands Academy of Arts and Sciences, Amsterdam.
Leonie Sazias, member of the Dutch Parliament, told her personal story and she made a plea for Whole Genome Sequencing. Together with Insire2Live she works in the Dutch Parliament to get this realized for all patients.
Peter Kapitein presented The Inspire2Live Patient Advocate Hero of Cancer Awards. This year they were given to Bob Weinberg (Whitehead Institute, Boston) and Laura van ‘t Veer were distinguished (USCF) for their outstanding achievements in the fight against cancers.
Martijn Nap from IQVIA presented the first data on excellent cancer centres. “Many existing online lists or recommendations of hospitals for specific cancers are not medically ranked or rated. This does not help patients in finding the right hospital”. Inspire2Live will publish final results in March.
Former Dutch parliament and researcher Ronald Plasterk explained “Vaccines against Cancer”. The idea is fusing Genome Sequencing with Immunology against Cancer. Plasterk and his team are now working on getting this to trial for several cancers. Plasterk ends with a thanks to Inspire2Live, for more or less arm twisting the required scientists to gather around the same table to develop this.
Patrick Connor (AstraZeneca) told us that cancer incidence and survival are growing. Great progress with some cancers, much less with others for example lung cancer. He proposes a ‘stack’ of measures to improve survival. He mentions that earlier diagnosis (of screening), are more useful of the optimal medicine for specific subtypes, improvement of the quality of care, the ideal to strive for double 5-year survival.
Day 1 ended with a Panel discussion: Maureen Visscher (I2L), René Medema (NKI / AvL) and Jelle Barentsz (RadboudUMC), discussed the ‘Els Borst Legacy: ‘When science says ‘This is how it is’, Doctors tell us: ‘This is how we can treat our patients’ and Patients say: ‘This is how we want to be treated’, how can government and the minister refuse to facilitate this!’
We continued with the diner at the Royal Society.
DAY 2
President of the KNAW Wim Saarloos welcomes us at in the renewed KNAW building and tell his personal story.
Patient advocate by necessity Linda Burger (I2L) talks about the contribution of eminence in research to cancer patients. Linda Burger, nurse, manager outpatient ward at AMC, is struggling with metastasized breast cancer. She shares her personal story with us: I am the specialist in my own life, you, the doctor, are the specialist in illnesses and treatments. Together we make the decisions. Linda is also upgrading the appointment system at her own hospital. She ends her impressive talk with these words: “I hate my sickness, but the experiences it has given me, I wouldn’t miss for a million”.
Bob Weinberg (Whitehead Boston Institute): Cancer is the most complicated diseases, the mechanism of cell growth is extremely complex, containing hundreds of molecules. And only a very small part is actually understood. Cancer develops from its early stages in many steps, and this takes decades. For example, we don’t understand how children can get cancer. Research is making progress, but cure development goes slow and prevention is much more effective.
Olufunmilayo Olopade (University of Chicago) shows us her work on breast-cancer risk assessment and individualized treatments. An additional tool to improve screening and detection, more effective than all-out screening: She has researched into stratification of risk.
Rapid fire talks of participants
What happened in my life or my organization? What did I realize and how did I do it? In presentations of 3 minutes and 1 slide at the max inspirational participants talk about their way of refurnishing the organization, they are part of: Elroy Aijal (Inspire2Live and HungerNdThurst), Cathelijne Ziedses des Plantes (Zilveren Kruis), Hrispsime Martysosyam (HENERAN, Armenia), Sandy Krijnen (SandyMoveS), Robin Koops (Inreda Diabetic), Omolola Salako (Nigeria), Tatiana Romanyk (Inspire2Live and IClusion), Fabrizia Stavru (Inspire2Live and Institute Pasteur) and Conradin Döbeli (Colontown).
Stephen Friend consistently progresses projects to use open wearable devices and systems to collect medical data, in a for research available environment with sufficient protection. Follow-on will be personalised feedback of signals gathered from someone’s data to their self.
In the afternoon groups went Out in the city of Amsterdam. They use the locations as an analogy and inspiration for their conversation on ‘What is possible?’ and ‘What can be done?’ We had groups visiting the VUMC on the topic of Surgery without incision. At Frame Therapeutics, we talked about vaccines against cancer. At IQVIA we spoke about combining artificial intelligence & real-world evidence. Another group got a workshop organized by Amsterdam City. And we spoke about eco-oncology and how you can apply ecological principles to understand and manage cancer.
Day 2 ended with a diner in the Grand and Cello music from Fritz Schröder. Mark Lawler performed as Stephen Dedalus (main character of James Joyce) and gave us some beautiful poems and songs.
DAY 3
Nicole Stolk (Central Bank of the Netherlands) tells her personal story and opens the day with the striking story of her young son Jasper who survived a brain tumour. The power of his mother in her support of her son is amazing. It showed the audience that cancer is not an individual disease but a disease that effects a whole family. Her talk ends with a video of Jasper in which he speaks of his future: he wants to become a doctor and help patients!
Laura van ‘t Veer (UCSF) has done a lot of work in her I-Spy trial design. I-Spy means that patients can easily step into another ‘arm’ of the breast cancer trial when there is no response in their initial arm and it appears that there might be a better response in another. Researchers and clinicians can learn a lot from this concept. More important is that patients benefit from it.
Joy Wolfram (Mayo Clinic) speaks about the importance and magic of Nano particles and cancer. With the help of these Nano particles we are able to deliver drugs in a more precise way and prevent the liver and kidney to break down the medicine before it can be effective.
Dan Peer (Tel Aviv University) ‘Personalized Medicine: RNA therapeutics – the next revolution?’ DNA has delivered good and important information to make more effective treatments. But (of course) it is not the magic bullet. Will RNA be this?
In the afternoon participants work with leaders of the sessions and under the direction of PA’s, towards the answer to the question: ‘In the coalition of the willing, how do we unlock the Eminence in: science, care, industry and government? Jan Hoeijmakers (ErasmusMC) and Ilona Schelle discussed the eminence in science. Mark Lawler (Queens Univ. Belfast), Nicole van Leeuwen and Jeffrey Waldron worked on the treatments. Sjoerd Repping (Zorginstituut Nederland, University of Amsterdam), together with Gaston Remmers stepped into the word of eminence and government. Finally, Werner Verbiest (Jansen Diagnostics) and Piarella Peralta worked with their group on industry issues in relation to eminence.
4 participants reflected on a successful congress and one of them even promised to join Inspire2Live as a patient advocate. This was so good to hear.
The closing words came from the director of the congress Ilona Schelle.
