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Frank Renkewitz , Cornelia Betsch , Niels Haase University of Erfurt

THE IMPACT OF NARRATIVE REPORTS ABOUT VACCINE ADVERSE EVENTS ON VACCINATION RISK PERCEPTION: A SIMULATION OF AN ONLINE PATIENT NETWORK . Frank Renkewitz , Cornelia Betsch , Niels Haase University of Erfurt. SMDM 2012, Oslo. Health Information and the Internet.

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Frank Renkewitz , Cornelia Betsch , Niels Haase University of Erfurt

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  1. THE IMPACT OF NARRATIVE REPORTS ABOUT VACCINE ADVERSE EVENTS ON VACCINATION RISK PERCEPTION:A SIMULATION OF AN ONLINE PATIENT NETWORK Frank Renkewitz, Cornelia Betsch, NielsHaase University of Erfurt

  2. SMDM 2012, Oslo Health Information and the Internet • Increasing number of people uses the Internet to obtain health information (Fox & Jones, 2008, Kummervold et al., 2008) • Recent trend: Web 2.0 applications / social media • Social patient networks (patientslikeme.com, “PLM”) • Promote interaction and provide user generated content • Provide opportunity to… • Share experiences with treatments and medications • Find other patients matched on clinical or demographic characteristics • Learn from aggregated data reports of other users • An example…

  3. SMDM 2012, Oslo Simulated Social Network – PLM • Pie-Chart on side effects:

  4. SMDM 2012, Oslo Simulated Social Network – PLM • “Individual patient evaluations” - Narrative reports:

  5. SMDM 2012, Oslo Social Patient Networks • Positive Evaluations (Frost et al. 2008, 2011; Wicks et al., 2010) • Patients assess PLM as beneficial • Help in starting / stopping medication; changing dosages • Social support • Problems: • Self-selected and non-representative sample of users • Relative frequency of reports about effective treatments and side-effects may be biased. • Source of narrative descriptions of treatments and side effects → Narrative Bias. • Narrative Bias (e.g., Betsch et al., 2010, 2011; Fagerlin et al., 2005): • Narratives affect judgments and decisions in the presence of more reliable statistical information • when the number of narratives is small • when the sampling procedure is unknown

  6. SMDM 2012, Oslo Research Question • How does the information environment available in online patient networks affect risk perceptions and decisions regarding pharmaceuticals? • Domain: Vaccination and vaccine adverse events (VAE)

  7. SMDM 2012, Oslo Study • Online experiment • 458 participants (85% female, Mean age: 32, highly educated) • Procedure: • Information on a hypothetical disease (“Dysomerie”) • Highly infectious, severe symptoms (fever, emesis, meningitis) • Recommendation to vaccinate • Statistical information on VAEs (WHO survey) – 20% • Further information from a patient network • IVs • Disclaimer: “bias awareness” vs. control • Relative Frequency of VAEs: 5%, 35% or 85% discounted? • Type of information: pie chart, narratives or both • Design: 2 x 3 x 3 between-subjects; random assignment

  8. SMDM 2012, Oslo Study • DVs • Perceived risk of vaccinating (scroll bar) • Intention to vaccinate (7-point scale)

  9. SMDM 2012, Oslo Results – Perceived Risk • Effect of relative frequency of VAEs: • summary statistics: r = .27 • narratives: r = .44 • both: r = .48

  10. SMDM 2012, Oslo Results – Perceived Risk Disclaimer effect: • Effect of relative frequency of VAEs: • bias awareness: r = .34 • control: r = .46

  11. SMDM 2012, Oslo Results – Intention • Effect of relative frequency of VAEs: • summary statistics: r = -.14 • narratives: r = -.25 • both: r = -.35

  12. SMDM 2012, Oslo Results – Intention Disclaimer effect: • Effect of relative frequency of VAEs: • bias awareness: r = -.17 • control: r = -.33

  13. SMDM 2012, Oslo Conclusion • Biased sampling in online patient networks has the potential to affect risk perceptions and treatment decisions. • Narrative information had a stronger impact than summary statistics. • Evidence for a narrative bias • This bias occurred even though the narratives were rather “frugal”. • Highly selected samples were not discounted. • A bias-disclaimer may reduce the effect.

  14. SMDM 2012, Oslo Thankyou! Betsch, C., Renkewitz, F. & Haase, N. (in press). Medical Decision Making. Conflictsofinterest: none

  15. SMDM 2012, Oslo

  16. SMDM 2012, Oslo Disclaimers • Bias awareness:In contrasttoresultsfromclinicalstudies, thepatientreportspublishedhereare not representativeoftheexperiencesof all peoplewhohavereceivedtherespectivemedicalproduct. The authorsindependently registered atthe Patientenportal.de andvoluntarilyreportedtheirexperienceswithoutbeingaskedto do so. Therefore, itispossiblethat a self-selectionispresent. The publishedreportsrepresentonlytheauthors’ individual perceptions. • Control (takenfrom PLM):Whilethereismuchinformationlearnedfromclinicaltrials, they do not fullyreflecttheway a medicalproductisused in real life. Bycompletingthesereports, youcanhelpimprovetheoutcomesandsafetyofpatientsbycontributing real worldsafetydatatodrugmanufacturersandregulators.

  17. Dependent variables

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