Paroxetine, Panorama and user reporting of ADRs: Consumer intelligence matters in clinical practice and post‐marketing drug surveillance

TLDR

The authors aim to highlight how patient‑reported email data can inform the patient–prescriber relationship and pharmacovigilance, and to propose internet‑based initiatives for collecting adverse drug reaction reports to improve drug safety. They systematically analyzed two email datasets—1,374 responses to a BBC‑TV documentary and 862 forum messages over nearly three years—to assess paroxetine‑related adverse reactions and demonstrate the internet’s potential for large‑scale patient reporting. The emails predominantly described serious mood disorders and withdrawal symptoms; collectively they carry substantial weight, suggesting that deep immersion in large data sets may be more valuable than sporadic reporting.

Abstract

We systematically analysed two complementary samples of emails relating to patients' problems with the popular SSRI antidepressant, paroxetine. These mainly concerned serious mood disorders and drug withdrawal symptoms. 1,374 emails were immediate responses to a major BBC‐TV documentary programme. These were contrasted with 862 messages on similar themes sent to a website discussion forum over a period of nearly three years. Despite the limitations of most individual email reports, we judged their collective weight to be profound. We also suggest that the value of “immersion” in a large body of such data may be greater than continuing exposure to a variable trickle of reports. We discuss the significance of these data in relation to the patient–prescriber relationship and pharmacovigilance. We suggest that the Internet offers unparalleled opportunities for soliciting and monitoring patients' reports of adverse drug reactions, and propose practical initiatives to capture peoples' experiences and thereby promote safer and more effective drug use.