Gunther Eysenbach MD MPH

Gunther Eysenbach MD MPH

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 SciencesUniversity 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

• 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 professionals / researchers

• For consumers

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 AREvidence-based Patient Choice and Consumer health informatics in the Internet ageJ Med Internet Res 2001;3(2):e19<URL: http://www.jmir.org/2001/2/e19/>

Quality

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

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 websites27 studies

100%0%

Inaccurate /non-evidence based

information on the web

n=1781 websites27 studies

Cancer ~5% inaccurate

Systematic review of studies evaluating health information on the web(Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700)

100%0%

Inaccurate /non-evidence based

information on the web

n=1781 websites27 studies

Nutrition ~45% inaccurateDiet ~89% inaccurate

Systematic review of studies evaluating health information on the web(Eysenbach et al., 2002. JAMA 2002; 287: 2691-2700)

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

Physical accessibility

Skills / Education / Computer literacy / Health literacy

(external)

findabilityReading

level

Design + Usability

privacy

convenience

site developersSearch engine developers

content developers

At homeSchoolKiosk/Library

Userfactors

Lore ipsum dolor sit amet consectetuer

Policymakers

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.

Challenge: Literacy

Challenge: eHealth Literacy

Norman CD, Skinner HAeHealth Literacy: Essential Skills for Consumer Health in a Networked WorldJ 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!