Shannon Hughes*, Utah State University, Logan, United States Track: Research Presentation Topic: Science 2.0/Collaborative Science Presentation Type: Oral presentation Submission Type: Single Presentation Building: LKSC Conference Center Stanford Room: Lower Auditorium 130 Date: 2011-09-18 03:00 PM – 04:30 PM Last modified: 2011-08-12

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The Internet provides an unprecedented opportunity for healthcare consumers, a traditionally silenced group in clinical trial research, to have voice by contributing their treatment experiences on review sites, discussion boards, and patient communities. While many welcome this opportunity for consumers to help further develop the treatment knowledge base, it has also led to concerns about credibility and authenticity of claims in an inherently non-transparent realm. Some social commentators argue that too much “democratization” of knowledge production to a largely anonymous lay public may have adverse social consequences as highly valued concepts of truth, reliability, and accountability become obscure or empty.

Anonymity of online users may offer the advantage of liberating users to be more truthful in sharing their experiences, though it simultaneously presents a new challenge to scientific principles that traditionally require for validity the use of known and verifiable samples. Terms of Use statements on health websites clearly state that authenticity and accuracy of consumer-reported information is the sole responsibility of individual users. Consumer treatment experiences on such sites could plausibly reflect any number of true or false claims (authenticity) from persons with or without vested interests (credibility), including such stakeholders as pharmaceutical industry representatives. Implications following from anonymity have not hindered researchers from utilizing consumer-reported treatment experiences as data. This experiential information may soon also factor into drug safety surveillance and regulatory decision-making processes.

This presentation discusses results from multiple strategies used to investigate the current state of knowledge about and methods for ensuring the authenticity and credibility of online consumer-reported treatment experiences. A systematic search of the literature on web credibility/authenticity/validity/anonymity was conducted using PsycInfo, PubMed, ScienceDirect, EBSCO, and CINAHL databases. An open-ended survey was emailed to 15 professional and consumer health website officials inquiring about their experience with and efforts to control authenticity and credibility of user contributions. Finally, 960 randomly selected consumer reviews of an antidepressant and antipsychotic medication from 4 health websites were inductively coded for consumer-reported drug effects. To assess for evidence of bias, a chi-square test was performed to compare the balance of positive and negative drug effects according to time period of the post and anonymity of the poster.

Results reveal that, while numerous studies describe how end-users assess credibility of health websites, few studies directly analyze authenticity or credibility of consumer-reported information. However, research on user-contributed information in non-health related fields offer insights into the possible scope and impact of this issue. Survey respondents (n=9) were unable to estimate the prevalence of consumer-reported data that are not authentic or credible, but speculated that the problem may exist. No respondents identified a systematic method for checking or ensuring authenticity or credibility of consumer-reported data. Finally, few statistically significant differences were found across the 960 consumer medications reviews, indicating no consistent pattern of bias. The literature review and surveyed website officials, however, suggest that continued vigilance and additional research is necessary. This presentation will end with suggestions for future research to help establish the validity of anonymous consumer-reported Internet data.