I am director of Foundation Mijn data Onze Gezondheid (MD|OG, My Data Our Health), an Amsterdam-based patient -driven NGO. MD|OG aims to honour and collect the value inherent in the experiences and data of patients, in order to empower patients and and to increase the the quality of medical research and health interventions. It does so by facilitating and creating new arrangements of citizen-driven data collection with new forms of data governance and research. MD|OG is one of the drivers behind the Holland Health Data Co-operative, and a leading expert in the field of Citizen Science for Health.
Cohort studies represent an under utilized source of health data, many citizens are hardly aware of them. By infusing cohort-studies with new opportunities for engagement, a more lively and creative exchange could be enabled between researchers and patients/citizens, in which both clinical data and Real World Data could be combined for the development of more relevant and personalised health interventions.