Summary of Inspire2Live Annual Congress – We are the patient voice in cancer – Amsterdam 2022
Video impression of our Annual
Olaf Sleijpen, Executive Board Member of Monetary Affairs and Financial Stability at the Dutch Central Bank, told us about embracing a healthy economy for the global patient. He told us more about his personal experience during COVID-19 and used this to illustrate the strong link between prevention, vaccination and economics. He informed delegates present about the worldwide impact of the pandemic on economic growth and declining incomes, not to mention the reinforcement of inequalities.
Mark Lawler, Co-Chair of the European Cancer Organisation’s Special Network on the impact of COVID-19 and Cancer, told us about his passion and great initiatives for involving cancer patients in decisions about their treatment by providing them with the right information and options. Mark also informed the audience that we have not yet done enough, how we should do better and with more focus on survivorship issues.
Maria Escala-Garcia, Consultant Genomic & Precision Medicine at IQVIA, presented statistics and information on how precision medicine can help industry move forward. She showed why the right precision medicine strategy requires a wider aperture with information of the impact curated and connected patient data assets. Furthermore, she also underlined why it is so important to involve patients and gave us an insight into what industry and patient collaboration can look like.
Sarper Diler, Member of the Istanbul University Medical Faculty and specialist on Cancer Coaching, Microbiome, Cancer and Diet, told us more about the need for physicians to make a greater contribution to their patients globally. His presentation provided surprising insights into systematic issues with trial results that are never published. In addition, Sarper focused on how primary care practitioners can provide invaluable support as professional cancer patient advocates.
Catherine Sauvaget, Scientist on Early Detection, Prevention and Infections at the International Agency for Research on Cancer, talked about how we can beat cancer together. She discussed the need for strong evidence when presenting the classification of carcinogenic risk of food to humans. In addition, she gave insights into 12 ways to reduce our cancer risk, also known as the European Code against Cancer.
Day 1 ended with a panel discussion moderated by Piarella Peralta with the participation of Mark Lawler, Maria Escala-Garcia, Sarper Diler and Catherine Sauvaget. We discussed the need to build a coalition of the willing before building a coalition of those who pull the strings. But how do we do this on a global basis in a way that the low- and middle-income countries can also benefit?
We closed the day with dinner on location.
Day 2 kicked off at 9am with our one and only Piarella Peralta who started by sharing her story about why she is a patient advocate. Esraa L-Sayed then shared more about being a patient advocate in a digital world and how this creates opportunities for us in our role as patient advocates.
The panel discussion which followed was all about pain management in low and middle-income countries. Panellist were Henk van Kranen, patient advocate Inspire2Live, Bernard Okoe Boye, CEO National Health Insurance Authority (NHIA), Peter Yeboah, Executive Director, Christian Health Association of Ghana (CHAG) and Rob Tenbrinck, anesthesiologist and pain expert Inspire2Live
This discussion gave us some interesting insights into how different the problems are in these economies compared to those which are being faced in the high-income countries. Indeed, some of the issues being faced are not even related to medicine, they are about the need for basic amenities and early detection amongst others.
Thirty percent of cancer cases can be prevented if we stop smoking. Wanda de Kanter’s message was very clear as she took us through the history of the cigarette and the impact it has on human lives. Emad Shash from the National Cancer Institute and University of Cairo, told us more about the situation in the Middle East, including where we currently stand as patient advocates and what our goals are.
After a short introduction by fellow Inspire2Live members, we had lunch before going out into the city of Amsterdam. Delegates could choose between 3 options: A ‘Best of Real Amsterdam’ guided tour; a visit to the Dutch Cancer Institute (DCI) or a visit to the PharmAccess Foundation. On our return we shared our experiences and finished the day off with drinks, lovely chats, live cello music from Bach performed by Fritz Schröder, and even some short Irish stories by Mark Lawler.
On Friday morning it was Peter Kapitein who first took to the stage to explain “why we have to make cancer our problem”. Let us be the change we want to see. The ‘four chairs’ story which followed, from this year’s Hero of Cancer Award recipient Khama Rogo, will stay with us for eternity. Khama’s presentation and those of our other speakers are available to watch via this page as well. Mao Mao then talked about one particular blood test could be used preventively to screen for early signs of certain tumours and how it could be used on a global scale.
After a short break and some time to network, the agenda continued with Ghada Ibrahim who talked about her role as Inspire2Live patient advocate and how, like for so many of us, this became a necessity for her at one point. Ghada was followed by Andrew Trister, from the Bill & Melissa Gates Foundation, who gave a talk entitled: ’How do you start cooperating for the benefit of the ones that need it the most?’.
Most delegates then opted to shorten the lunch break and dive straight into the next working sessions. There was one group discussing lifestyle and cancer by sharing experiences from the workplace or their personal life. Another group spoke about personalised medicine and a third group shared thoughts about empathy and understanding life and cancer. Before we knew it, the congress was almost over and, after a short summary of the previous three days, it was time to quickly swap cards or phone numbers and say goodbye. We hope to welcome everybody again for next year’s congress.
September 14, 2022 - September 16, 2022Time
3:00 pm - 3:00 pm UTC+1Venue
Kloveniersburgwal 29, 1011 JV, Netherlands,
- Catherine Sauvagat – The contribution of the WHO to patients globally
- Emad Shash – Cancer patient advocacy
- Esraa L-Sayed – The digital world and patient advocacy
- Ghada Ibrahim – The value of Patient Education v1
- Mao Mao – Moving early diagnostics to global patients
- Maria Escala Garcia – The contribution of physicians to patients globally
- Mark Lawler – I’m a scholar activist by necessity
- Sarper Diler – The contribution of physicians to patients globally
- Wanda de Kanter – Victims of the tobacco industry
- Henk van Kranen – Introduction to immunotherapeutics
- Dutch Cancer Institute – Combining targeted therapies in oncology
- Dutch Cancer Institute – Cancer can be hereditary
- Andrew Trister (Bill & Melinda Gates Foundation) on It starts with cooperating for the benefit of the ones that need it most
- Catherine Sauvagat (WHO/IARC) on The contribution of the WHO to patients globally
- Emad Shash on Cancer patient advocacy, where do we stand in the Middle East?
- Esraa L-Sayed – The digital world and patient advocacy
- Ghada Ibrahim on The value of Patient Education
- Peter Kapitein on We have to make it our problem & the presentation of the Hero of Cancer Patient Advocate award
- Khama Rogo on Let’s fill those empty chairs – Dealing with oncology in Africa
- Mao Mao on Moving early diagnostics to global patients
- Maria Escala Garcia on The contribution of physicians to patients globally
- Mark Lawler on I’m a scholar activist by necessity
- Olaf Sleijpen on Financial Stability and health for the global patient
- Piarella Peralta on I’m a patient advocate by necessity
- Sarper Diler on The contribution of physicians to patients globally
- Wanda de Kanter on Victims of the tobacco industry
- Rapid fire talks by our patient advocates
- Panel discussion on The coalition of the willing
- Panel discussion on Pain management in low- and middle-income countries
- Introducing the working sessions