The COVID-19 epidemic is a big challenge for our health care system, but also for the economy and our daily life. The management of the current crisis requires real-time data on the course of the epidemic in order to take the right containment measures and avoid virus exposures. The widespread use of Internet-enabled devices offers the opportunity to involve citizens in the monitoring of the current epidemic, thereby optimising coverage but also the speed of detection.
Social media platforms provide valuable ideas on how to improve the participation and long-term commitment of participants in surveillance studies. Particularly worth mentioning are personalised feedback on possible risk exposures or site-specific case numbers, as well as the opportunity to share one's own health status with friends and loved ones. The planned new platform FLISbook is based on these experiences and aims to contribute to better and faster surveillance of the current and possible future waves of the COVID-19 epidemic by involving citizens.
In concrete terms, users regularly enter information on their current state of health into an app that works independently of the device (i.e. on smartphones as well as on PCs). Data collection by users includes information on possible COVID-19 symptoms, as well as risk exposures such as the use of public transport or contact with COVID-19 sufferers. Thus, a personalized timeline can be built up, which is also relevant for the treating physicians in case of an actual infection.
Users can also share certain information with people from their personal environment to keep them informed about their current condition and share their experiences. They can also receive information from other people, provided that they have been invited by them to join their network. Based on their details, participants will also receive information tailored to their needs about the current state of the epidemic in their region.
It should be emphasised that data collection and dissemination is carried out anonymously as far as possible. Users only have to enter an e-mail address and a user name, which does not have to provide any personal information. After all, the aim is to monitor the epidemic, not the people! The research data will be evaluated anonymously to answer various research questions on the COVID-19 epidemic and for regular reporting to users and the public. In particular, the information collected will help researchers to obtain a better picture of the current situation of the epidemic and to better assess the possible course or effectiveness of measures.
FLISbook was developed based on an existing platform for digital health studies by the Digital and Mobile Health Group of the Institute of Epidemiology, Biostatistics and Prevention. This team already has extensive experience in the development and operation of digital studies involving citizens, such as the Swiss Multiple Sclerosis Registry with over 2'200 participants.