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Long Covid is a novel syndrome resulting from the Covid-19 pandemic. A plethora of questions remain about the disease course, diagnostics and best treatment options but also how to best prepare health care and social services. A lot of research on Long Covid has emerged worldwide but research agendas have been developed mostly by experts and authorities. If the medical research community relies on this "status quo" of setting research agendas, we have no way to know a priori the relevance of the data generated for persons affected by Long Covid.
The needs of people affected by Long Covid have not yet been systematically identified, nor is it clear what research questions should be prioritized to meet those needs and advance care for persons affected by Long Covid. This project pursued two research aims: First, we sought to establish a research agenda prioritized by persons affected by Long Covid. Second, we aimed to develop a framework for co-creating a research agenda with citizen scientists that is transferable to other diseases.
We first established a 30-citizen board of people affected by Long Covid or Chronic Fatigue Syndrome, who then defined research priorities to address knowledge gaps. The broader community of patients affected by Long Covid and of relatives was involved through established networks of the Altea Network and Long Covid Schweiz.
The identified research priorities were communicated to national funding bodies and the public. Finally, based on the process and learnings from this project we developed a framework for creating a citizen-driven research agenda, suitable for transfer to other diseases.
