The perspectives of people with lived experience of any condition being researched must actively inform the research questions asked and the way in which we go about answering them. The experience of Long Covid gives a contemporary example of how working together with patients is integral to medical research.
When ‘Long COVID’ emerged as a concept in Spring 2020, it was those with lived experience of the disease who gave it its name and characterized it to the world, initially through use of social media1. Even though chronic illness induced by viral infection is not a new phenomenon, awareness of this potential outcome of the COVID-19 pandemic was entirely absent from public messaging, even at a time when large numbers of people were becoming infected with SARS-CoV-2.
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Source: Alwan, N.A. Lessons from Long COVID: working with patients to design better research. Nat Rev Immunol (2022). https://doi.org/10.1038/s41577-022-00692-6 (Full text)