University of BC researchers are recruiting “citizen-scientists” to help solve a puzzling illness that affects thousands of Canadians.
The Long COVID Patient Experience Project is asking Kootenay residents living with symptoms of long COVID to help with their research through an online portal.
“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 UBC and co-lead for the project.
The project connects long haulers and health scientists so that they can learn together. The information aims to 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. Individuals experiencing post COVID-19 condition commonly report impacts on their mental health, including anxiety, depression and PTSD (Post Traumatic Stress Disorder).
“People can feel overwhelmed and isolated,” said Li. “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 called, citizen science.
“Anyone who is curious about science and wants to share their experience to help themselves and others can be a citizen scientist,” said Li.
By sharing information they help scientists ask better questions and get better answers.
Kootenay residents and other Canadians who are 19 years of age or older and living with long COVID are eligible to participate. 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, but citizens’ identity will remain confidential.
Many people live with symptoms that affect what they are able to do in their everyday life. A recent federal government survey found that 14.8 per cent of adults with a confirmed or suspected infection experienced longer-term symptoms. Almost half (47.3 per cent) experienced symptoms for a year or longer, and 21.3 per cent said their symptoms often or always limited their daily activities.
“No one knows more about long COVID than the people who live with it,” added Li.
Symptoms may include brain fog, fatigue, breathlessness, headaches, ringing in the ears, and loss of taste and smell, among others.
The long COVID project is the second phase of a project funded by the BC SUPPORT Unit, which initially learned more about the impact of pain.
The long COVID portion was designed with the help of six patient partners, including four who live with long COVID.
“They helped shape the website so that it would better match the needs of those living with challenging symptoms such as brain fog and fatigue,” adds Alison Hoens, a knowledge broker at the University of B.C. “They ensured that it is usable and meaningful.”
For more info go to patientscientist.ca and participate in survey.