Emergent diseases represent a challenge to democratic governance across the Atlantic, thrusting patients, doctors, and public health systems into a contested terrain of health politics. This has become most visible since the outbreak of the COVID-19 pandemic and related sequelae like Long Covid. Although other prominent diseases may not affect as many people as Long Covid, they can have long-lasting collateral effects, as the Zika outbreak in Brazil in 2016 demonstrates. While in some countries or with respect to specific outbreaks, a sluggish institutional response escalated disputes between advocacy groups, patients, medical experts, and regulatory agencies, in other situations, emergent diseases have been a site of innovative co-production of knowledge among these parties. Through comparison across countries and diseases, this project seeks to understand what factors and dynamics shape whether newly formed patient advocacy groups clash with public health authorities and medical professionals over the speed, direction, and implications of scientific research on a range of diseases or, on the contrary, develop forms of effective co-production. Emergent diseases are thus focal sites where the relationship between expertise, democracy, and trust can be studied. At the heart of this research project is the question:

How and to what extent can participatory science counteract the crisis of trust in public health and medical expertise?