Inform and empower yourself
In order to organize the best cancer care and the best access to cancer care worldwide we need to significantly change and speed up the processes in cancer research and care. We simply cannot accept the fact that about 10 million people die of cancer each year. The good news? We as citizens can do something about it and get cancer under control. On this page we give you information and suggestions on what you can do. We focus on the issues with impact, like:
Educate yourself as a Patient Advocate
- Educate yourself: go to all course topics and presentations from this EORTC-ECPC partnership. The goal: enable cancer patient advocates to learn about cancer biology; personalized cancer treatment and care; the organization of clinical research; and very importantly, how patient groups can become more involved in the design and implementation of clinical trials. It will provide you as cancer patient advocates with a stimulating and challenging training experience leading to a much greater understanding of the whole clinical trials process.
Change the way science works
- Inform yourself: check the excellent talk of Adrien Treuille at the Sage Bionetworks congres 2012 about a new look at science from the crowd. Crowdwisdom.
- Empower yourself: when you are in a trial, ask your researcher if he or she could open up the data and models used in the trial one year after the start, instead of keeping them to him- or herself and only publishing the results after a couple of years. That way, many more researchers can work on improving the models, speeding up the process and we have lots of more data to work with, which makes for better quality of research. After all, it is your data.
- Inform yourself: check the excellent talk of Lawrence Lessing at the Sage Bionetworks congres 2012 about how money rules congres and how the Medical Industrial Complex works. In politics the only dependency that is allowed is on the people, the voter. In medical science and healthcare the only dependency that is allowed is on the citizen, the patient.
- Empower yourself: Here’s an excellent and activating talk from Bettina Ryll. A very powerful lady that shows that when you talk about us it should be not without us.
- Empower yourself: In this video our hero Joep Lange is teaching us how to be a Patient Advocate.
Get health literate
- Inform yourself: make yourself an expert on your disease. For instance, many radiologists do not know the relevant medical studies, or maybe they do not want to know. A typical CT scan has 100 times the radiation of a chest X-ray, or more, depending on where and how it is done. A CT study with several scans can expose a patient to the radiation dose of the average Hiroshima survivor who was about 2 miles from Ground Zero (source: professor Gerd Gigerenzer, ‘Risk Savvy’).
- Empower yourself: take a sneak preview on professor Gerd Gigerenzer’s new book and read ‘Defensive decision making’ and ‘No decision about me without me’. Also, ask your doctor about alternatives. For instance; is a CT scan really necessary? Can we also use MRI or X-ray instead of a CT scan?
- Rapport ‘Maarschappelijke waarde Ipso inloophuizen’
Onderzoek i.s.m. KWF bewijst meerwaarde informele zorg bij kanker. 96% van gasten van inloophuizen ervaren positief effect na het bezoeken van een inloophuis.
- Hoe dure medicijnen toch vergoed kunnen worden en hoe ziekenhuizen ook voor dure medicijnen en voor off label beschikbare medicijnen een vergoeding kunnen krijgen van de zorgverzekeraar (Bron: Kien Legal; 12 mei 2015)
- Clinical trials all around the world: ClinicalTrials.gov
- Informative dutch website with information about available trials in the Netherlands: Kankeronderzoek.
- Good site in laymen words (mainly) about new treatments: CancerCommons.org
- For patients in the Netherlands that want their drugs reimbursed (if they are not reimbursed already of course): StichtingEGV.nl
- I-SPY 2 is a clinical trial for women with newly diagnosed locally advanced breast cancer: ISPY2.org
This dutch website gives information about available trials in the Netherlands. Very good and informative (Dutch website): Kankeronderzoek.
- Inform yourself on pancreas cancer (Dutch website): Lisa Waller Hayes Foundation
- Practical information and tips on work and cancer for both management and employees: (Dutch website): .nl/
- Information on the project for Personalised Food (Dutch website): KCgroen on Personalised Food
New link: A very informative site with news about treatments and more: KankerActueel.nl
Share your data
Good and reliable new way of giving informed consent
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