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Patient Engagement

At Long COVID Web (LCW), we gain invaluable insight from our patient community, which includes people with lived experiences of Long COVID (PWLE) and their families. The lived and caregiving experiences they provide help shape our research priorities and educational resources, ensuring that the work of LCW reflects the real challenges and needs of the Long COVID community.

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One of the key ways patients contribute is through the Patient Advisory Council (PAC).

Patient Advisory Council

The Patient Advisory Council (PAC) at Long COVID Web brings together individuals with lived experience of Long COVID to ensure that patient voices remain at the heart of everything we do. Through collaboration, storytelling, and shared leadership, the PAC helps drive meaningful change in how Long COVID is understood, researched, and addressed across all LCW initiatives.

Objectives:

Objectives:

How to Get Involved

Joining the LCW Patient Advisory Council (PAC) is a meaningful way to share your lived experience and help guide how Long COVID results are used across healthcare, social, and patient support areas, and contribute to research about Long COVID and how the results are shared. 

Why Join the PAC

  • Help advance Long COVID research

  • Share your experiences to influence research and knowledge mobilization

  • Ensure patient perspectives are represented in advising research

  • Collaborate with researchers, clinicians, and other interest holders

Eligibility to Join

  • Have lived experience of Long COVID or be a caregiver

  • Be able to attend regular virtual meetings

  • Be committed to respectful collaboration

  • Reside in Canada

Key Responsibilities and Commitments

  • PAC meets regularly via virtual platform (Zoom, Microsoft Teams).

  • Share perspectives and feedback on research priorities and materials.

  • Collaborate respectfully with researchers and other council members.

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PAC Applications for the 2025-2026 cycle are now closed.

We thank you for your interest. Please check back in the Summer of 2026.

Frequently Asked Questions

Past and Ongoing PWLE Contributions 

  • Contributing to knowledge translation, grant proposals, survey development, and planning Symposiums. 

  • Offering key input into Long COVID Web resources, reviewing research materials, identifying research priorities, and contributing to funding applications. 

  • Represent patient voices at LCW Committee meetings and support equitable, patient-driven research.​

  • PWLE helped name LCW and revised its code of conduct to highlight inclusion and respectful behaviour.

  • PAC influences research-patient collaboration and key network decisions.

  • PAC provides input on LCW website design and content.

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