Fraser Valley/UBC – Fraser Valley residents living with symptoms of long COVID are being recruited as ‘citizen scientists’ to help solve the puzzling illness that affects thousands of Canadians.
The Long COVID Patient Experience Project connects long haulers and health scientists so that they can learn together. The information will help guide research into long COVID — a group of symptoms that linger for at least three months after initial infection. One of the project goals is to enhance patient care and support.
“Many people are living with long COVID and there are many questions about how best to help them recover,” says Dr. Linda Li, a professor at the University of B.C. and co-lead for the project.
“People can feel overwhelmed and isolated. They may be uncertain as to whether their symptoms are typical of others who are also living with long COVID. In addition, there are limited avenues to collect information from people living with long COVID and analyze it to guide understanding and inform potential healthcare management.”
The website at patientscientist.ca helps fill those gaps. It’s the only one of its kind to date in Canada. Uniquely, it uses a form of crowd-sourcing: citizen science.
The term refers to people who want to help answer scientific questions, Li explains. “Anyone who is curious about science and wants to share their experience to help themselves and others can be a citizen scientist.” By sharing information they help scientists ask better questions and get better answers.
Fraser Valley residents and other Canadians who are 19 years of age or older and living with long COVID are eligible toparticipate. By completing a survey, they can anonymously provide as much information as they want and compare their symptoms with others – now and in the future, since results will be constantly updated. All information is kept confidential and safe.
Researchers can also access the data.
