I am senior advisor of the patient advocacy at the Netherlands Patient Federation. Since more than eight years, when my son got diagnosed with Duchenne Muscular Dystrophy, a rare progressive muscle wasting disease, I am engaging in health and patients interests.
For me, the patient perspective is the key for improving care, health research and education. Good data collections are relevant prerequisites for these aims, too. In our digitalised world patients collect data every day. These can add great value to the institutionalised methods of health research, as life takes place outside the clinical walls.
The Netherlands Patients Federation represents more than 200 patient organisations. We are committed to every person who needs care. We make patients’ voices heard in consultation rooms, by politicians and health insurance companies and in the news.
In JoinUs4Health, I want to contribute the view of patients in the early onset of a research project and show how that can add value to research ideas in general. I will advise the project team from the patients‘ perspective and ensure that it influences the aim and the result of the project. Most of all I am looking forward to discuss ethical implications of patients participation in research, as until now patients are poorly represented in ethical discussions in sciences.