Last, ensure information is accessible. In many health systems, GPs are gatekeepers to specialists and are considered trusted information sources. However, without established diagnostic guidelines, patients are left to self-advocate and prove their condition exists.
SOCIAL MEDIA ADVICE A POOR ALTERNATIVE
Because of negative encounters with healthcare professionals, patients turn to social media platforms, including long COVID online communities on Facebook. While these platforms allow patients to validate experiences and discuss management strategies, patients should not rely only on social media given the potential for misinformation.
As a result, it is crucial to ensure information about long COVID is multi-lingual and available in a wide range of formats such as videos, online media and physical printouts.
The recent recommendations of the Chief Science Advisor of Canada to establish diagnostic criteria, care pathways and a research framework for long COVID are a positive development, but we know patients need support now. Improving long COVID education and awareness won’t resolve all of the issues faced by patients, but they’re foundational to compassionate and evidence-based care.
Simran Purewal is Research Associate, Health Sciences. Kaylee Byers is Senior Scientist, Pacific Institute on Pathogens, Pandemics and Society. Kayli Jamieson is Research Assistant for Pacific Institute on Pathogens, Pandemics and Society. Neda Zolfaghari is Project Coordinator, Pacific Institute on Pathogens, Pandemics and Society, and the Pandemics & Borders Project. All authors are at Simon Fraser University. This commentary first appeared on The Conversation.