Patient and public involvement within epidemiological studies of longCOVID in the UK Correspondence from AshRouten kamleshkhunti and colleagues. PPIE uniofleicester unibirmingham ucl
. Individuals with long COVID were actively involved in generating item content for the SBQ and assisted with recruitment. The SBQ-LC has since been licensed more than 90 times across 50 countries. In addition to this important contribution, patient partners also actively coproduced a study to test the feasibility and acceptability of delivering non-pharmacological, self-management interventions remotely in the community, shaping the study design and co-selecting intervention resources.
A particular area of learning relates to the establishment of patient advisory groups . Diversity of participants can be improved by recruitment from several PPI networks rather than a single source. Clear pathways for inviting new members to join PAGs are needed to ensure that they are sustainable. It is important that PPI members receive regular updates and information on the project and are clearly informed of the purpose and importance of their involvement.
Researchers may not always be aware of how much PPI can improve their research. Researchers should consider the experience, skills and capabilities of each PPI member and what they want to contribute to, rather than having this be decided, perhaps inappropriately, by the research team.
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