A team of researchers from the Institute for Epidemiology, Biostatistics and Prevention at the University of Zurich (UZH) as well as members from the Long Covid Switzerland association and the Altea Long COVID Network have launched a Citizen Science Project. The aim of this project was to determine the most urgent needs and questions of those affected by Long COVID and to take them into account as a basis for prioritizing the research questions.
Defining research priorities
The research team recruited a Long COVID Citizen Science Board (LCCSB), which was used for the first time. The board consisted of 21 people affected by Long COVID and seven people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). They met online to discuss their needs and identify key research areas.
The research results of the LCCSB are now available. The evaluation shows that three research areas are particularly relevant for those affected: adequate treatment options, a clear diagnosis and access to appropriate care. This requires health professionals to be aware of Long COVID – including in children.
Appropriate care requires awareness among healthcare professionals.
The LCCSB's priorities were grouped into four areas: medicine (e.g. risk factors, diagnosis, treatment), health services, socio-economic aspects (e.g. impact on work and finance) and burden of disease. Each of the 68 questions had to be evaluated and prioritized according to their importance by the "Citizen Scientists" and other long-COVID-affected people.
And now?
Ideally, the researchers expect two things from these results: on the one hand, the hope that the study will have a positive impact on the funding of future Long COVID projects and, on the other hand, that this methodology can also be transferred to other areas and health conditions - which in turn could pave the way for future patient-centric research plans.
Further information on the project and the current research results can be found here:
Press release of the University of Zurich
