What is patient participation?
Patient participation entails involving people with lung disease in your research. Not as a test subject, but as a discussion partner. People with lung disease can mean a lot to scientists because of their experience. No one knows their lung disease better than the patient himself. Therefore, patients add valuable information, which increases the relevance of your research.
Patient participation is:‘The participation of patients (or patient organisations) in research, policy and quality of care as a partner alongside scientists, policymakers and professionals. The unique experiential expertise of patients (or patient organisations) is used here with the aim of increasing the relevance and quality of research, care and life for the patient.’
In this video, made by ZonMw, researchers talk about the usefulness of patient participation.
Patient participation, therefore, does not mean using patients as test subjects in research, but rather utilising their perspective. This perspective can be used, for example, to determine which problems patients experience and which solutions they want. This can improve research and increase the relevance of the research for the patient.
More information about patient participation can be found here.