Patient organizations can help enable effective communication of adverse drug reactions
To improve therapeutic decision making, it is crucial that information regarding adverse drug reactions reaches patients. One possible avenue is to collaborate with patient organizations. In a pilot study, the Netherlands Pharmacovigilance Centre Lareb explored how adverse drug reactions can be communicated through patient organizations. This study shows that patient organizations can play an important role in communication of adverse drug reactions to a relevant audience.
A signal of ‘levothyroxine and panic attacks’ was tailored to patients’ needs, in terms of language, style and content, with emphasis placed on what to do when experiencing the symptoms described. The signal was communicated via the Dutch thyroid organization’s digital newsletter, social media channels, website and print magazine.
The social media post generated more engagement than other communications from the patient organization, indicating a strong interest in this information. The additional patient experiences that were shared in the comments on social media further strengthened the original signal and its relevance to patients, creating an interesting feedback loop.