Shannon Hughes*, School of Social Work Florida International University, Miami, FL, USA David Cohen, School of Social Work Florida International University, Miami, FL, USA Track: General Track Presentation Topic: Consumer empowerment, patient-physician relationship, and sociotechnical issues Presentation Type: Oral presentation Submission Type: Single Presentation Building: MaRS Centre Room: CR2 Date: 2008-09-04 11:00 AM – 12:30 PM Last modified: 2008-11-05

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By universal definition and consensus, information about psychotropic drugs prescribed and used as medicines rests on a highly specialized knowledge base, long seen as the legitimate if not exclusive province of medical experts. This expert knowledge base has, however, become highly contested, for three main reasons. First, to reach a "valid" understanding of drugs' effects, researchers have persistently muted the direct voice and speech of the patient in favor of a presumably more objective biomedical discourse [1]. Second, the blurring lines between pharmaceutical industry marketing and scientific activities, and the near monopoly of the industry over "scientific" knowledge production on psychotropic drugs has resulted, at a minimum, in serious publication biases and great uncertainty about drug efficacy and safety [2, 3]. Third, intermediaries through which officially legitimated drug information is filtered (including the FDA drug label, psychiatrists, and direct-to-consumer advertising) are losing credibility and relevance. In parallel, the Internet now allows researchers, clinicians, and consumers to review drug experiences and information from thousands of consumers without professional mediation, and presumably without pharmaceutical industry supervision over content. How these web-based sources contribute to or dilute the expert/scientific knowledge base, or how they constitute their own knowledge base, remains virtually unexplored.
Moreover, pharmaceutical companies looking for new opportunities to influence consumer behavior are keenly aware of the power of consumer forums to build trust, offer support, and encourage behavior [4]. This presentation will also review the possible extent and implications of drug representative infiltration into online consumer spaces.
Finally, "democratizing" the production of knowledge and consumers' broadened acceptance of what constitutes legitimate, trustworthy, or credible information results in a trans-disciplinary debate about the appropriate role of experts and non-experts in policy, media, science, and culture, as well as the true nature of what is being applauded as "democratization" [5]. Applied to the construction of knowledge about psychotropic drugs, the debate may be summarized by the following questions: Are increased pluralism and democracy in drug knowledge production and decision-making, along with increased transparency of such processes, the best means to build a knowledge base continually evolving toward the ideal of being "fully informed"? Or might they actually hinder both experts' and laypersons' understanding of the genuine effects of drugs, by diluting the knowledge base with ill-considered contributions? Answers to these questions will have broad implications for the future of clinical research methods, post-marketing drug surveillance, and treatment decision-makers (clinicians, third-party payers, and potential and actual consumers).
This presentation will review inadequacies in how scientific methods are applied in drug research to construct official drug knowledge, opportunities for knowledge construction within consumer-constructed online spaces, and emerging questions related to the authenticity and credibility of peer-produced, often anonymous contributions.

References

1. Jacobs D, Cohen D. What is really known about psychological alterations produced by psychiatric drugs? Intern J of Risk & Saf in Med 1999;12:37-47.
2. Ioannidis I, Lau J. Completeness of safety reporting in randomized trials: An evaluation of 7 medical areas. JAMA 2001;285:437-443.
3. Melander H, Ahlqvist-Rastad J, Meijer G, Beermann B. Evidence-b(i)ased medicine - selective reporting from studies sponsored by pharmaceutical industry: Review of studies in new drug applications. Br Med J 2003;326:1171-1173.
4. O'Neill A. The patient trust deficit in pharmaceutical marketing. DTC Perspectives 2007 Dec:12-16.
5. Keen A. The cult of the amateur: How today\'s internet is killing our culture. New York: Doubleday; 2007.