Patient and public involvement within epidemiological studies of long COVID in the UK

Data Resource Profile: the Children and Young People with Long COVID (CLoCk) Study

“…There were 17 CYP who were initially recruited from the study or a precursor study to be part of the PPI team. 16 There was a core group of 12 active members contributing to the study in multiple ways, including with the Delphi research definition of long COVID (see 18 , 19 ).…”

Healthcare workers must be included in long covid research in the UK

“…Patient and public involvement in research into long covid is key to understanding the condition’s impact on people’s lives, identifying research priorities, and ensuring that study design and methods are applicable to the people most affected by it 1. It’s particularly important to involve diverse groups of the population, including people from ethnic minority backgrounds and people with disabilities, to ensure that the research is representative and relevant.…”

“…It’s particularly important to involve diverse groups of the population, including people from ethnic minority backgrounds and people with disabilities, to ensure that the research is representative and relevant. Examples are available of the various ways in which patient and public involvement has been integrated into long covid studies in the UK—such as actively involving people with long covid in generating content for the Symptom Burden Questionnaire 1…”