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Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education and media literacy Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education
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Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education and media literacy Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education

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Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education and media literacy by Dr.Gunther Eysenbach …

Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education and media literacy by Dr.Gunther Eysenbach
Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education and media literacy

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    • 1. Associate Professor  Department of Health Policy, Management and Evaluation, University of Toronto; Canada Senior Scientist ,  Centre for Global eHealth Innovation, Division of Medical Decision Making and Health Care Research;  Toronto General Research Institute of the UHN, Toronto General Hospital, Canada Visiting Professor, Faculty of Behavioural Sciences University of Twente, The Netherlands Editor & Publisher, Journal of Medical Internet Research (www.JMIR.org) Chair, Medicine 2.0 Conference Series (www.medicine20congress.com) Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education and media literacy Gunther Eysenbach MD MPH Gunther Eysenbach MD MPH
    • 2.
      • Where are we?
      • (What examples do we have in Africa, and elsewhere?)
      • What are the issues and challenges to addressed?
      • What actions need to be taken and by whom?
    • 3. Digital health information
      • For health professionals / researchers
      • For consumers
    • 4.  
    • 5. The ethnic theory of plane crashes (Chapter in “Outliers” by Malcolm Gladwell)
    • 6. “ The single most important variable in determining whether a plane crashes is not the plane, it's not the maintenance, it's not the weather, it's the culture the pilot comes from. Planes are flown safely when the pilot and co-pilot are in open and honest communication. And in cultures where it is difficult for a junior person to speak openly to a superior, you have lots of plane crashes.” (Source: Gladwell)
    • 7. Power Distance Index (P.D.I.) [Geert Hofstede] = measurement of how much a particular culture values and respects authority. Countries with a high P.D.I. generally value being more deferential towards authority, and thus not contradicting a superior.
    • 8. Analogies to Healthcare
      • Pilot = health care professional
      • Co-pilot = patient
      • Power Distance = Inverse Patient Empowerment
    • 9. Eysenbach. Random Research Rants (Blog) http://www.webcitation.org/5h5jkooUX
    • 10. Why patient empowerment / patient involvement?
      • Safety/Quality
      • Trust
      • Health Outcomes?
    • 11. Eysenbach G, Jadad AR Evidence-based Patient Choice and Consumer health informatics in the Internet age J Med Internet Res 2001;3(2):e19 <URL: http://www.jmir.org/2001/2/e19/>
    • 12. Quality
    • 13. Eysenbach G, Powell J, Kuss O, Sa ER. Empirical studies assessing the quality of health information for consumers on the World Wide Web: A systematic review. JAMA 2002; 287: 2691-2700 Meta-analysis of information quality on the web
    • 14. 100% 0% Inaccurate / non-evidence based information on the web Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700 ) n=1781 websites 27 studies
    • 15. 100% 0% Inaccurate / non-evidence based information on the web n=1781 websites 27 studies Cancer ~5% inaccurate Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700 )
    • 16. 100% 0% Inaccurate / non-evidence based information on the web n=1781 websites 27 studies Nutrition ~45% inaccurate Diet ~89% inaccurate Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700 )
    • 17. Approaches for ensuring quality information
      • Intermediation
        • Seals
        • Certification
        • Top-level domains
      • Apomediation
        • Consumer education
        • Peer-to-peer approaches / collaborative filtering/ social networking & filtering
        • Semantic web
    • 18. Standards
      • Instruments and checklists that can be used during material development
        • HON Criteria (Health on the Net Foundation)
        • SAM Suitability Assessment of Materials (Doak, 1993)
        • Mitretek Criteria (Rippen et al., 1997)
        • Patient Information Checklists Coulter et al. 1998
        • DISCERN (Charnock, 1999)
        • CREDIBLE Algorithm (Eysenbach, 2007)
    • 19. Is a health website CREDIBLE?
      • C urrent and frequently updated
      • R eferences cited
      • E xplicit purpose and intentions of the site
      • D isclosure of developers and sponsors
      • I nterests disclosed and not influencing objectivity (e.g. financial interests)
      • B alanced content, list advantages and disadvantages
      • L abeled with metadata
      • E vidence-level indicated
      Eysenbach G: Infodemiology: The epidemiology of (mis)information. Am J Med 2002 Dec 15;113(9):763-5
    • 20.
      • Where are we?
      • (What examples do we have in Africa, and elsewhere?)
      • What are the issues and challenges to addressed?
      • What actions need to be taken and by whom?
    • 21. Challenge: Access URL:http://www.internetworldstats.com/stats1.htm. Accessed: 2009-06-09. (Archived by WebCite® at http://www.webcitation.org/5hOqCogVB)
    • 22. Challenge: Access
    • 23. Physical accessibility Skills / Education / Computer literacy / Health literacy (external) findability Reading level Design + Usability privacy convenience site developers Search engine developers content developers At home School Kiosk/Library User factors Lore ipsum dolor sit amet consectetuer Policy makers Level 1 Level 2 Level 3 Level 4 “ accessible” content Accessibility barriers Eysenbach, In: Lewis, D; Eysenbach, G; Kukafka, R; Jimison, H; Stavri, Z (eds.) (2005). Consumer Health Informatics. New York: Springer. ISBN 9780387239910.
    • 24. Challenge: Literacy
    • 25. Challenge: eHealth Literacy Norman CD, Skinner HA eHealth Literacy: Essential Skills for Consumer Health in a Networked World J Med Internet Res 2006;8(2):e9 <URL: http://www.jmir.org/2006/2/e9/>
    • 26. Challenge: Language >2,000 languages in Africa (Source: UNESCO)
    • 27.
      • Where are we?
      • (What examples do we have in Africa, and elsewhere?)
      • What are the issues and challenges to addressed?
      • What actions need to be taken?
    • 28. Recommendations / Questions
      • Challenges (ehealth literacy, access) in Africa considerable, but mobile technologies present opportunities
      • Training programs and information material for proxies (community nurses, chiefs/multipliers)
      • Role of enduser/patient/citizen participation in Africa? (“Web 2.0” approaches for a mobile environment, Twitter-like)
      • Good governance to stimulate high quality, accessible health information includes policies that foster/encourage apomediation models (crowdsourcing, bottom-up approaches)
        • E.g. making 1:n SMS affordable, developing an African Twitter-like peer-to-peer service for SMS
      • Quality criteria for African content? (culturally sensitive, special usability considerations)
      • Technology and innovative programs
    • 29. URL:http://ross.typepad.com/blog/2008/07/twitter-for-afr.html. Accessed: 2009-06-09. (Archived by WebCite® at http://www.webcitation.org/5hOiOf6uR)
    • 30. Thank you!

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