Hughes, S. et al.: The Construction of Expertise in the Age of the Internet: Psychotropic Drug Knowledge in Online Consumer Accounts This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com ) Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

This slideshow, presented at Medicine 2.0’08 , Sept 4/5 th , 2008, in Toronto, was uploaded on behalf of the presenter by the Medicine 2.0 team

Do not miss the next Medicine 2.0 congress on 17/18th Sept 2009 ( www.medicine20congress.com )

Order Audio Recordings (mp3) of Medicine 2.0’08 presentations at http://www.medicine20congress.com/mp3.php

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

Speech of Drug User is Fundamental Psychoactive agents with overall effects No physiological markers for diagnosis 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.

Psychoactive agents with overall effects

No physiological markers for diagnosis

For psychotropic drugs, there is “difficulty in applying valid and sensitive measures of therapeutic effect”

Randomized Controlled Trial (RCT) Mutes Users’ Voices Investigator-rated measures Narrowly defined outcomes Few opportunities for unstructured speech Limited investigator/participant interaction Methodological problems, including lack of methods for assessing adverse events

Investigator-rated measures

Narrowly defined outcomes

Few opportunities for unstructured speech

Limited investigator/participant interaction

Methodological problems, including lack of methods for assessing adverse events

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

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

In Minnesota 1997-2005, psychiatrists received $6.7 million from pharma companies (Ross et al., 2007; The New York Times , 2007)

In Minnesota 1997-2005, psychiatrists received

$6.7 million from

pharma companies

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

Marketing expenditures:

Every channel is penetrated:

Clinical trials

Published articles

FDA drug label

Direct-to-consumer advertising

Physicians (“detailing”)

Continuing medical education

“ Opinion leaders”

Patient advocacy groups

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

Hundreds and thousands of unmediated, direct accounts

Brain shivers: Example of adverse event “discovered” online

Potential of consumer sites is virtually unexplored

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

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

Where Can You Get The Full Drug Story? Expert-run Unitary discourse Accept mainstream/official accounts Consumer-run Heterogeneous discourses/perspectives Accept/reject mainstream/official accounts

Expert-run

Unitary discourse

Accept mainstream/official accounts

Consumer-run

Heterogeneous discourses/perspectives

Accept/reject mainstream/official accounts

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

Are persons with vested interests contributing drug reviews?

Pharma literature on Direct-to-Consumer Advertising suggests an interest in online “patient communities”

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”

“… 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”

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 …”

“ 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 …”

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

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

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

Authenticity is unresolved and evolving Pharma Wikipedia edits were relatively infrequent and innocuous As consumer sites increase in importance, stakes for pharma to shape perception rise

Pharma Wikipedia edits were relatively infrequent and innocuous

As consumer sites increase in importance, stakes for pharma to shape perception rise

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

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