It is to be welcomed that the authors have said as they do. However, so far, I think I'd summarise the UK experience as the patient organisation (as in this very forum and the Thyroid UK website) actually propagating information without any involvement by those officially involved with pharmacovigilance.
Issues like the withdrawal of "old" Teva and everything associated with that were posted here very early in the whole episode - more or less as soon as the information was put on the MHRA website.
I suspect everyone here would be delighted if pharmacovigilance issues were posted here - more or less automatically.
I'd like to think that even Dutch and Swedish issues were mentioned. Partly as we have so many non-UK members, partly because many of the issues will be common (e.g. switching to mannitol) even if the actual products are not dispensed in the UK.
Drug Saf. 2020 May 16. doi: 10.1007/s40264-020-00932-5. [Epub ahead of print]
Communicating Adverse Drug Reaction Insights Through Patient Organizations: Experiences from a Pilot Study in the Netherlands.
Härmark L1, Weits G2, Meijer R3, Santoro F4, Norén GN4, van Hunsel F2.
Author information
1 Netherlands Pharmacovigilance Centre Lareb, Goudsbloemvallei 7, 5237 MH, 's-Hertogenbosch, The Netherlands. l.harmark@lareb.nl.
2 Netherlands Pharmacovigilance Centre Lareb, Goudsbloemvallei 7, 5237 MH, 's-Hertogenbosch, The Netherlands.
3 Netherlands Thyroid Organization, Stationsstraat 79 G, 3811 MH, Amersfoort, The Netherlands.
4 Uppsala Monitoring Centre, Bredgränd 7, Uppsala, Sweden.
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.
PMID: 32418193
DOI: 10.1007/s40264-020-00932-5
ncbi.nlm.nih.gov/pubmed/324...
Journal article (full article is behind a paywall):
