#12waysofERASE Day 8 Enable PPIE to fully contribute, there is no room for tokenism. If you want to meaningfully engage with people who have lived experience, you need to enable them to participate. Ask them what they need in order to be able to participate fully.
Credit Colin Louw - South African San Council

ALT Credit Colin Louw - South African San Council

ERASE-LC@ERASE_LC
7 Dec 2024
#12waysofERASE If there isn’t an appropriate way to do something, create a different way. Long COVID brings a real risk of provoking PEM/PESE. Whilst we want to understand what is going on physiologically, we know that conducting full/traditional CPETs carries an inherent risk.

Dec 8, 2024 · 12:44 PM UTC

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This will vary for every person as every person has different needs. Be prepared to run meetings differently and use technology such as voice notes or dictation to allow them to provide feedback if this is better than speaking live/writing.
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Ask them how they can best access information or whether you need to modify the pace. Avoid last-minute deadlines and expect last-minute cancellations if they are unwell but don’t just move on. Reschedule as many times as it takes so they can contribute.
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We need to hear the voices of the very unwell., They can find it hard to access studies or healthcare yet they offer so much knowledge. To create research fit for participants you first have to enable PPIE to provide their input.
Credit Colin Louw - South African San Council

ALT Credit Colin Louw - South African San Council
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