Citizens are joining health research, from study design to results
Participatory research lets citizens help shape health studies, from protocols to results. It is growing fast and gives researchers fresh perspectives.
What if the people a study is about helped shape it? That is the idea behind participatory research, which brings citizens into scientific projects. It is now growing fast in the field of health.
The approach treats people not just as volunteers who provide data, but as partners. They can be involved from the protocols (the plans that set out how a study will work) all the way to the results.
For scientists, this opens up new perspectives on the questions they are trying to answer.
It also responds to what France calls "démocratie sanitaire" (health democracy): the idea that patients and the public should have a say in decisions that affect their health.
One participant in a project linked to Alzheimer's disease explained what motivates them: "I like being able to take part in something around Alzheimer's."
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