Communicating Adverse Drug Reaction Insights Through Patient Organizations: Experiences from a Pilot Study in the Netherlands

Linda Härmark (), Gerda Weits, Rietje Meijer, Federica Santoro, G. Niklas Norén and Florence van Hunsel
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Linda Härmark: Netherlands Pharmacovigilance Centre Lareb
Gerda Weits: Netherlands Pharmacovigilance Centre Lareb
Rietje Meijer: Netherlands Thyroid Organization
Federica Santoro: Uppsala Monitoring Centre
G. Niklas Norén: Uppsala Monitoring Centre
Florence van Hunsel: Netherlands Pharmacovigilance Centre Lareb

Drug Safety, 2020, vol. 43, issue 8, No 6, 745-749

Abstract: Abstract Introduction To improve therapeutic decision making, it is crucial that information regarding adverse drug reactions reaches patients. It is not enough to disseminate such findings through regulatory and scientific channels; targeted efforts to reach patients are necessary. One possible avenue is to collaborate with patient organizations. Objectives The aim of this pilot study was to explore how adverse drug reactions can be communicated through patient organizations. Methods A text describing 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. Results The digital newsletter was distributed to around 5000 subscribers. On Facebook, 13,820 people viewed the message, with 2346 clicks in the message, indicating an intention to read the whole post. The interactions on social media were positive, and the tone was respectful. Conclusion Patient organizations can help enable effective communication of adverse drug reactions to a relevant audience. 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. The favourable experiences in this study support further consideration and exploration of this approach to communicate adverse drug reactions to patients.

Date: 2020
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DOI: 10.1007/s40264-020-00932-5

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