Background

The CiLC-S project - Crowdsourcing Long COVID Sweden - is a collaborative research project. Collaborative research projects are constructed around disciplinary areas and societal issues with common or overlapping interests between established research and social actors. In the CiLC-S project, researchers in information science, statistics, medicine, organism biology and cognitive neuroscience collaborate with the non-profit patient organisation the Swedish COVID society on research questions that relate to the community of confirmed or suspected long-term sick (so-called “long-haulers”, or sufferers of long COVID/post COVID) after a COVID-19 infection in Sweden. The long term ill are here defined as persons with confirmed or suspected COVID-19 infection that experience more than three months of lingering health effects after the initial point of infection.

Study design and data collection

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

Expected results

WP1 contributes with increased knowledge on patterns of the illness and possible relations to demographics and other background factors among the broader population of confirmed and suspected long-term ill after a COVID-19 infection in Sweden. 

WP2 produces knowledge on requirements and possibilities for a future strengthened information infrastructure of use for afflicted persons, research actors, and medical and patient care institutions with relevant areas of responsibility in the corona pandemic as well as for an improved societal preparedness for handling similar future social crises.

WP3 contributes with critical methodology development in the area through increased insights into if, and if so, how, crowdsourcing data collection methods such an open digital survey can be developed and used in order to support aspects of such processes and knowledge development for research and social good that WP’s 1 and 2 aim for.

Long-term ill with an interest to take part in the study?

The above described online questionnaire is now open for those long-term ill after a COVID-19 infection to respond to. The questionnaire takes about 40-60 minutes to fill in, and it is open until the 1st of August. Participation in the questionnaire is completely anonymous. To respond to the questionnaire you have to be 18 years or older, have had  a confirmed or suspected COVID-19 infection, and have experienced lingering health effects for more than 3 months after the initial point of infection. The questionnaire is currently only available in Swedish, but if needed, it is allowed to take help from a trusted person to help answer the questions for you. The invitation to take part in the questionnaire is shared in several Facebook groups and through the Swedish Covid society, so we kindly ask that you only respond once per person. Thank you for your time!

The questionnaire can be reached through the following link: https://sunet.artologik.net/hb/Survey/1776

PS. Within CiLC-S, another research project named WiPC-S (based at the University of Skövde) is currently also being planned. This project aims to explore wellbeing among individuals with long-term COVID/ post COVID. Keep your eyes open also for this survey which will be shared in similar ways later this year.

Project members

Veronica Johansson, Ph.D., senior lecturer, information science, University of Borås, veronica.johansson@hb.se , tel: +46 33 435 59 68

Linda Wänström, Ph.D, senior lecturer, statistics, Linköping university, linda.wanstrom@liu.se , tel: +46 70 - 089 66 58

Kim Ramme, Med. Dr, paediatric science, specialist in pediatrics, hematology, oncology, Moment Child and Youth Medical Centre, Vällingby Kim@Rammes.se , tel: +46 739 - 837997

Sakari Kallio, Ph.D., ass. professor, cognitive neuroscience, University of Skövde, sakari.kallio@his.se , tel: +46 500 - 44 88 24

Katrin Lundstedt-Enkel, Ph.D., reader, environmental toxicology, the Department for organismal biology, Uppsala university,  Katrin.Lundstedt-Enkel@ebc.uu.se , tel.: + 46 70 - 678 43 12

Kayvan Yousefi Mojir, Ph.D., senior lecturer, information science, University of Borås, kayvan.yousefi_mojir@hb.se

Johanna Nilsdotter Swartswe, student, cognitive neuroscience, University of Skövde