The MyData-movement is a unique blend of international societal, business, technological, legal and governmental stakeholders grouped around a concept that positions the individual citizen as the central entity through which any data use should be ethically endorsed. Not only health data, but any kind of data. The 4th international conference held between 25-27 of September…Continue reading The MyData 2019 conference: Rebuilding trust – for human-centered data economy →

On Saturday, October 19 through Monday, October 21, 2019, the Society for Integrative Oncology’s 16th International Conference presented an exceptional opportunity to learn about new findings in integrative oncology from healthcare/scientific disciplines that have the potential to transform cancer care internationally. The conference, co-hosted this year by Memorial Sloan Kettering Cancer Center, took place in…Continue reading Inspire2Live Update: Integrative Oncology →

October 22nd and 23rd Ilona Schelle and Peter Kapitein joined the Annual Congress of the Global Alliance for Genomics and Health (GA4GH). This organization contributes extremely to the availability of data for better research, treatments and quality of life for patients. It was a pleasure to join. Although it is not a good thing to…Continue reading Patients participation in research and the relevance of data →

At Inspire2Live we are already quite good in bringing the right people together in so called Discovery Networks and getting them to solve a specific problem in oncology. So far, we didn’t want to play a role in the aftermath of such a Network meeting and left the follow up to the other participants in…Continue reading Inspire2Live exploring new pathways to help Patient Advocates take their expertise a step further →

This is the question we asked to the chairman of the board of the OLVG, Maurice van den Bosch. The answer to this question was quite different from the answer weexpected. The answer was not about complicated governance structures or workgroups, no, the only way to find a good answer to this question was a…Continue reading How do you run a hospital →

Working as a couple, the Patient and the Carer, husband and wife, gives us unique opportunities to impart and share knowledge gained as advocates of Inspire2Live. I am the patient and I have been lucky enough to have a loving husband and family. I have been cared for and I recognise the stress that my…Continue reading Barbara & Mark Moss: we need to take care of the carer →

Since last Friday we are attending the ESMO 2019 congress, that will end by today. The ESMO congress is one of the global stages for the exchange and debate of cancer. The programme is impressive and as Patient Advocates we decided to attend the meetings focusing on our area of interest, the programme called ‘Patient…Continue reading The Patient Advocacy Track at ESMO 2019 in Barcelona →

Healthcare should be based on the best evidence available, from whatever source. ‘Evidence-based medicine encompasses the integration of clinical expertise with the best available external evidence alongside with patient preference’ (DavidL. Sacket). This is often narrowed down to statistically valid evidence, whose meaningfulness evaporates in the context of patients. Doctors have years of experience and…Continue reading Evidence, Arrogance, Ignorance, Eminence: Update on our next Annual Congress: 29-31 January 2020 →