CiLC-S - Crowdsourcing Long Covid Sweden

CiLC-S is a project in the category collaborative research. This type of research is constructed around academic subjects and societal problems with common or overlapping interests between established research and social actors. In the CiLC-S project, researchers from information science, statistics, medicine, biology, and cognitive neuroscience collaborate with the non-profit patient organisation the Swedish Covid Society around research questions of relevance for the group of so-called 'long-haulers' (people with lingering symptoms for more than three months after a COVID-19 infection) in Sweden.

The project incorporates three workpackages (WP's). Two of these rely on a national questionnaire as data collection method, while the third involves a thorough evaluation and analysis of the chosen questionnaire method, its resulting data and analytical results.

The first WP involves descriptive statistics and analysis of correlations between variables of quantifiable data. The results from this analysis contributes to increased knowledge about long Covid (or post Covid) in Sweden concerning symptoms and other characteristics of the illness among the afflicted individuals, with associated consequences on individual and societal levels.

The other WP evaluates the methods of the first WP, data and results as a whole. This analysis contributes with extended knowledge on the applicability of crowdsourcing based methods for efficient and useful data collection and analysis in time restricted, large-scale crisis situations in ways that can meet science's needs of quality assured data for trustworthy and reliable knowledge production.

The third WP employs a thematic content analysis of the long-haulers' descriptions of information needs and information strategies. The results of this lead to knowledge on how a future improved information infrastructure for afflicted individuals, the civil society and public agencies with relevant areas of responsibility in the corona pandemic and similar large-scale social crises can be supported.

Project members

Veronica Johansson, fil. dr., universitetslektor, biblioteks- och informationsvetenskap, Högskolan i Borås, veronica.johansson@hb.se , tel: +46 33 435 59 68

Linda Wänström, fil. dr, universitetslektor, statistik Linköpings universitet linda.wanstrom@liu.se , tel: +46 70 - 089 66 58

Kim Ramme, med. dr, pediatrisk vetenskap, specialistläkare i pediatrik, Moment Barn- och ungdomsmedicinsk mottagning, Vällingby Kim@Rammes.se , tel: +46 739 - 837997

Sakari Kallio, bitr. professor, kognitiv neurovetenskap Högskolan i Skövde sakari.kallio@his.se , tel: +46 500 - 44 88 24

Kayvan Yousefi Mojir, fil. dr., universitetslektor, biblioteks- och informationsvetenskap, Högskolan i Borås, kayvan.yousefi_mojir@hb.se

Johanna Nilsdotter Swartswe, student, kognitiv neurovetenskap Högskolan i Skövde