PBAC Consumer Comments Dos and Don’ts Social Media Tiles

by Patient Voice Initiative | Sep 22, 2025 | Carer Resources, Consumer Comments, More information about PBAC, Patient Groups, Patients

PBAC Consumer Comments Dos and Don’ts Social Media Tiles

Don't explain the condition, do explain the reality of living with the condition

Don't submit lists and stats, do submit numbers that matter to you

Don't cut and paste, share what you know

Don't explain treatment, do explain reality of having treatment

Don't give general information, be specific

Don't give number of cases, do explain difficulties of having a rare disease

Don't hold yourself responsible, do what matters most

Don't submit clinical data, do submit what happens in real world

Don't ask clinicians to do patient group input, do ask them to submit their own input

Don't submit videos and avoid photos, do ask about non-written options if needed

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