Construction of Expertise in the Age of the Internet: Psychotropic Drug Knowledge in Consumer-Constructed Websites

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Presented at Medicine 2.0 in Toronto, September 4, 2008. Official, expert drug accounts have become highly contested, and direct, consumer accounts found online may have potential to complement, …

Presented at Medicine 2.0 in Toronto, September 4, 2008. Official, expert drug accounts have become highly contested, and direct, consumer accounts found online may have potential to complement, supplement, or replace expertise.

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  • 1. The Construction of Expertise in the Age of the Internet: Psychotropic Drug Knowledge in Online Consumer Accounts Shannon Hughes, MSW, Ph.D. Candidate Florida International University, Miami, FL Non-presenting author: David Cohen, Ph.D. Medicine 2.0 , Toronto, Ontario September 4-5, 2008
  • 2. Speech of Drug User is Fundamental
    • Psychoactive agents with overall effects
    • No physiological markers for diagnosis or treatment monitoring
    • For psychotropic drugs, there is “difficulty in applying valid and sensitive measures of therapeutic effect”
    Brunton, Lazo, & Parker (2006). Goodman & Gilman’s The Pharmacological Basis of Therapeutics, 11 th ed.
  • 3. Randomized Controlled Trial (RCT) Mutes Users’ Voices
      • Investigator-rated measures
      • Narrowly defined outcomes of mostly medical/ professional interest
      • Few opportunities for unstructured speech
      • Limited investigator/participant interaction
    • Methodological problems, including lack of methods for assessing adverse events
  • 4. Pharma Funds 70% of Research
    • 42 published head-to-head antipsychotic trials:
    • 33 (78.6%) were funded by a pharma company
    • 90% reported outcomes favoring the sponsor’s drug
    • Analysis of 12 antidepressants :
    • 94% of published articles reported positive outcomes,
    • 51% of outcomes were positive according to FDA reviews
    Heres et al., 2006 Turner, et al., 2008
  • 5.
    • In Minnesota 1997-2005, psychiatrists received
    • $6.7 million from
    • pharma companies
    (Ross et al., 2007; The New York Times , 2007)
  • 6. Drugs are Marketing-Driven
      • Marketing expenditures:
    • Every channel is penetrated:
      • Clinical trials
      • Published articles
      • FDA drug label
      • Direct-to-consumer advertising
      • Physicians (“detailing”)
    $29.9 billion industry reporting $57.5 billion independent estimates (Donohue, Cevasco & Rosenthal, 2007) (Gagnon & Lexchin, 2008)
    • Continuing medical education
    • “ Opinion leaders”
      • Patient advocacy groups
  • 7. Consumer Drug Experiences on the Internet
    • Hundreds and thousands of unmediated, direct accounts
    • Brain shivers: Example of adverse event “discovered” online
    • Potential of consumer sites is virtually unexplored
  • 8. Typology of Sites
    • Expert-run
      • Expert health: www.webmd.com
      • Consumer-centric : www.revolutionhealth.com
    • Consumer-run
      • High structure: www.askaptient.com
      • Moderate structure: www.crazymeds.us
      • Little structure: www.theicarusproject.net
  • 9. Where Can You Get The Full Drug Story?
    • Expert-run
      • Unitary (biomedical) discourse
      • Accept mainstream/official drug accounts
      • Drug ratings/reviews probably similar across sites
    • Consumer-run
      • Heterogeneous discourses/perspectives
      • Accept/reject mainstream/official drug accounts
      • More likely to find different sides of drugs’ story across sites
  • 10. Are Consumer Drug Accounts Credible?
    • Are persons with vested interests contributing drug reviews?
    • Pharma literature on Direct-to-Consumer Advertising suggests an interest in online “patient communities”
    - O'Neill, 2007
  • 11. Head of Operations of a consumer-centric site:
    • “… pharma personnel are ‘discouraged’ from visiting these websites because if they see an unreported SAE, they would be bound to report it to the FDA”
    • “ What happens at the rep level, however, is tough to monitor.  That said, with 250,000+ individuals enrolled in [our website], its hard to think that ‘sales representatives going against FDA/company policies’ can skew the data significantly”
  • 12. Owner/moderator of a consumer-run forum:
    • “ We had someone from Cephalon come by.  The person was easy to spot.  Again I'm fine with it.  It's just like science.  They have to defend their positions and we have to defend ours”
    • “ Given that they have set up their own sites I seriously doubt if they are going to bother with peer-to-peer sites / user generated media …”
  • 13. Gauging Pharma Activity using Wikiscanner
    • Between 2002-2007, over 34.5 million anonymous Wikipedia edits ( ~ 18-21% of all edits)
    • 187,529 different orgs made at least 1 edit
      • 7% of a database of over 2.6 million org IP addresses
    • Astra Zeneca edit deleting a sentence about suicidal thinking/behavior
  • 14. Pharma Wikipedia Edits, 2002-2007 Omeprazole : Deleted sentence about heavy marketing of Nexium in the face of generic competition; Added summaries of several studies where Nexium outperforms Prilosec Drotrecogin alfa : Deleted word “deceptive” before “marketing campaign” ; Deleted 6 contraindications GlaxoSmithKline : Added paragraph about “Good Works” of company Total Edits Edits related to meds/pharma Example edited entries Astra Zeneca 949 23 (2.4%) quetiapine ; omeprazole Eli Lilly 832 38 (4.6%) drotrecogin alfa; Talk:fluoxetine GSK 1,148 31 (2.7%) GlaxoSmithKline
  • 15. Authenticity is unresolved and evolving
    • Pharma Wikipedia edits were self-interested, but relatively infrequent and innocuous
    • As consumer sites increase in importance, stakes for pharma to utilize this marketing opportunity by shaping perception in these sites rises
  • 16. Research, Clinical, Consumer Implications
    • Post-marketing surveillance using consumer sites
    • Content of expert/consumer sources should be compared and related to informational needs of treatment decision-makers
    • Allow space for “consumer-run” sites in order to maintain heterogeneity of perspectives and discourses