Patients participation in research and the relevance of data
October 28, 2019

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 have a separate patient advocacy track (there should be a patient advocate in every panel and plenary keynote lectures should also be given by patient advocates), the GA4GH was surprising. The patient advocacy session was planned in a small room but we had to move to the main room because of the enormous amount of participants. A promise for next year.

Ilona spoke about patient participation in research and the relevance of data. Stop talking about the abuse of data. Patients simply say: don’t wait; use our data! We are in a hurry. It is not the researcher or clinician that is at risk, it is me. My life is at stake. We should not allow lawyers, bureaucrats and politicians to determine what to do with our data.

It is the cooperation between patient advocates, researchers and clinicians to make the necessary change in healthcare. Data is of the greatest importance for research to speed up and for clinicians to implement better treatments. Ilona gave 3 examples of the use of data in Inspire2Live initiatives:

  • Another way of determining the treatment of pancreatic cancer patients based on Whole Genome Sequencing. This is what we are working on in cooperation.
  • Another way of determining the treatment of glioblastoma patients based on Tissue Culture and Drugscreening. This is what we will be working on in cooperation.
  • Another way of treating metastases in the liver of colon cancer patients based on Interventional Radiology. This is what we have done in cooperation.

If one thinks you can change healthcare on your own: sweet dreams. If government thinks healthcare will change because the minister says it needs to change: sweet dreams. History shows thousands of failures.

It was our beloved friend, our fellow patient advocate and former and best minister of health ever, dr. Els Borst that taught us: ‘When science says ‘this is how it is’ and the doctor says ‘this is how I can treat my patient’ and the patient says ‘this is how I want to be treated’, who am I to refuse the implementation?’

Cooperation, with the patient first, is a prerequisite for change. All other approaches are doomed to fail.

GA4GH thank you for the opportunity to stand up.

Ilona Schelle and Peter Kapitein
Patient Advocates Inspire2live