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“Nothing about us without us” has become a common refrain over the past decade as patients and communities have pushed for a greater say in health care research and decision-making. But now some fear pandemic expediencies are eroding hard-won advances in patient partnership. COVID-19 had a “catastrophic” impact on patient engagement in health research, says Bertrand Lebouché, a clinician-researcher at McGill University Health Centre. Prior to the pandemic, funding bodies increasingly required investigators to involve patients throughout the research process from setting priorities to translating results into practice. “It gives an opportunity for the patient to become part of the solution,” says Lebouché.

United kingdomLisa mccorkellBertrand lebouchCynthia weijsKerry kuluskiUniversity of calgaryRare disease foundationMcgill interdisciplinary initiative in infectionMcgill university health centreOriented researchCanadian institutes of health researchMcgill university healthBetter healthTrillium healthSystem impact fellowAlberta health services