Role of standards, consumer education and media literacy
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Role of standards, consumer education and media literacy

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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

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Role of standards, consumer education and media literacy Role of standards, consumer education and media literacy Presentation Transcript

  • Quality and safety of health information on the Internet: Who decides and how? Role of standards, consumer education and media literacy Gunther Gunther Eysenbach MD MPH Eysenbach MD MPH Visiting Professor, Associate Professor  Faculty of Behavioural Sciences Department of Health Policy, Management and University of Twente, Evaluation, University of Toronto; Canada The Netherlands Senior Scientist,  Centre for Global eHealth Innovation, Editor & Publisher, Division of Medical Decision Making and Health Care Research;  Journal of Medical Internet Toronto General Research Institute of the UHN, Research (www.JMIR.org) Toronto General Hospital, Canada Chair, Medicine 2.0 Conference Series (www.medicine20congress.com)
  • • 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?
  • Digital health information • For health • For consumers professionals / researchers
  • The ethnic theory of plane crashes (Chapter in “Outliers” by Malcolm Gladwell)
  • “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)
  • 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.
  • Analogies to Healthcare • Pilot = health care professional • Co-pilot = patient • Power Distance = Inverse Patient Empowerment
  • Eysenbach. Random Research Rants (Blog) http://www.webcitation.org/5h5jkooUX
  • Why patient empowerment / patient involvement? • Safety/Quality • Trust • Health Outcomes?
  • 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/>
  • Quality
  • Meta-analysis of information quality on the web 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
  • Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700) Inaccurate / non-evidence based 0% information on the web 100% n=1781 websites 27 studies
  • Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700) Inaccurate / non-evidence based 0% information on the web 100% Cancer ~5% inaccurate n=1781 websites 27 studies
  • Systematic review of studies evaluating health information on the web (Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700) Inaccurate / non-evidence based 0% information on the web 100% Nutrition ~45% inaccurate Diet ~89% inaccurate n=1781 websites 27 studies
  • 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
  • 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)
  • 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
  • • 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?
  • Challenge: Access URL:http://www.internetworldstats.com/stats1.htm. Accessed: 2009-06-09. (Archived by WebCite® at http://www.webcitation.org/5hOqCogVB)
  • Challenge: Access
  • User Skills / Education / Computer literacy / factors Health literacy At home School Kiosk/Library privacy convenience Lore ipsum dolor sit amet consectetuer Physical (external) Design + Reading accessibility findability Usability “accessible” level content Policy Search engine content developers makers site developers developers Level 1 Level 2 Level 3 Level 4 Accessibility barriers Eysenbach, In: Lewis, D; Eysenbach, G; Kukafka, R; Jimison, H; Stavri, Z (eds.) (2005). Consumer Health Informatics. New York: Springer. ISBN 9780387239910.
  • Challenge: Literacy
  • 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/>
  • Challenge: Language >2,000 languages in Africa (Source: UNESCO)
  • • 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?
  • 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
  • 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)
  • Thank you!