Earlier this month, the Long COVID Patient Experience Project launched. This website allows people living with symptoms of long COVID to share their experiences and help scientists ask better questions and get better answers when researching long COVID.
Long COVID is a group of symptoms that linger for at least three months after someone gets COVID-19. These symptoms may include things like brain fog, fatigue, breathlessness, headaches, ringing in the ears, and loss of taste and smell, among others. Current estimates suggest that 10–40 per cent of people who have COVID-19 will develop ongoing symptoms following their initial infection. In order to drive research and enhance care and support, the scientific community needs to learn more about these experiences.
The Long COVID Patient Experience Project is the second phase of an initiative funded by the BC SUPPORT Unit. The project, led by CHÉOS Scientist and BC SUPPORT Unit Methods Cluster Lead Dr. Linda Li, initially took a Citizen Science approach to learn more about the impact of pain, and is now using the same approach to further understand the impact of long COVID and guide research.
“A citizen scientist is a person who wants to help answer scientific questions,” said Dr. Li. “Anyone who is curious about science and wants to share their experience to help themselves and others, can be a citizen scientist.”
Not only does the site embody the principles of citizen science, but it was also developed with critical guidance from people with lived experience of long COVID.
“We designed this project with six patient partners — four of whom live with long COVID. They helped shape the project so that it would better match the needs of those living with challenging symptoms such as ‘brain fog’ and fatigue,” said Alison Hoens, CHÉOS Research Associate and Knowledge Broker for the project. “They ensured that it is useable and meaningful.”
Coming together to solve the puzzle of long COVID
The website is a partnership between the BC SUPPORT Unit, the Post-COVID-19 Interdisciplinary Clinical Care Network, Arthritis Research Canada, the University of British Columbia, Simon Fraser University, and Population Data BC.
The development of the site was led by Dr. Li along with Dr. Kim McGrail (Scientific Director for Population Data BC and Director of Research at UBC Health) and CHÉOS Scientist Dr. Adeera Levin, who also leads the Post-COVID-19 Interdisciplinary Clinical Care Network (PC-ICCN). CHÉOS Scientist Dr. Karen Tran, who is a research scholar with the PC-ICCN, was instrumental in helping design the components of the site that will be used by researchers.
“This website is a wonderful way for people living with long COVID to share details about their symptoms and to share their story,” said Dr. Li. “Researchers can reach out to access these data to identify and answer unique questions related to long COVID.”
To date, this website is the only one of its kind in Canada. Visit https://patientscientist.ca/long-covid-survey to learn more.
If you would like to access the data for research purposes, please contact Alison Hoens at Alison.firstname.lastname@example.org.