Non Governmental Organization Quality of health related information

Non Governmental Organization Quality of health related information on the Web Evolution of Health Web certification, through the HONcode experience Célia Boyer Celia Boyera Executive Director , a Health On the Net Foundation, Geneva, Switzerland www. hon. ch

www. healthonnet. org The Health On the Net Created in 1996, HON is a not-for profit foundation Mission: HON guides Internet users by highlighting reliable, comprehensible, relevant and trustworthy sources of online health and medical information, tackling the major obstacle of Web: the overwhelming quantity of information the uneven quality of health information available online Funded by the Geneva state, European Commission, and the French National Health Authority 2

www. healthonnet. org Inititatives *no implementation

www. healthonnet. org Initiatives for accessing the quality of Web sites Selection or referencing (the first approach): Yahoo!, Medline. Plus (Miller et al, 2000), CISMe. F (Darmoni et al, 1999) Self-regulation (the most utopian): IHC : e. Health Code of Ethics (Risk, 2000), TNO Health Trust : QMIC (Sheldon, 2002) Evaluation/certification of web pages (the most accurate): HONcode (Boyer et al. , 1996), URAC (webapps. urac. org) WMA (Bosch, 2002) Popularity of web pages (the most naturally used): Google (Page et al. , 1998) Collaboration of users (the most democratic): Outfoxed / Lijit, Google coop, Wikipedia Education of users for quality evaluation (the most complementary): Oxford University : DISCERN,

www. healthonnet. org The HONcode www. HON. ch/HONcode/ → e. Europe 2002 Quality Criteria for Health related Websites

www. healthonnet. org The HONcode Certification THE PROCESS The HONcode certification is requested by the Web publisher with a self-evaluation step The HONcode Review Committee conducts a thorough inspection and provide recommendations Transparency of the certification: excerpts of proof Deliver the HONcode seal

www. healthonnet. org The HONcode Certification IDENTIFICATION When certified, the site displays a unique dynamic HONcode seal valid for one year

www. healthonnet. org The HONcode Certification Duration of validity Annual systematic audit Automatic continuing monitoring Re-evaluation after a complaint submission

www. healthonnet. org HONcode certification protocol The webmaster pledges to respect the HONcode during the time the website displays the HONcode seal. The webmaster must notify HON when the website changes significantly. The assessments are confidential, except for the information that must be published in the HONcode database on HON’s website.

www. healthonnet. org THE HONCODE DATABASE

www. healthonnet. org The HONcode database Compliance with the HONcode principles Indexed with Me. SH terms and HON labels 7’ 400 sites in 102 countries 4’ 071 certified sites in Europe 35 languages + 10 millions web pages certified

www. healthonnet. org ACCESS TO THE HONCODE WEBSITES

www. healthonnet. org Toolbar lights up if web site is certified

www. healthonnet. org Indentification of HONcode certified sites

www. healthonnet. org

Centralize access to ethical information www. healthonnet. org

www. healthonnet. org Government-level collaboration The French National Health Authority (HAS) chose HON for the certification of French health websites. The French bill 2004 -810, 13 th August 2004 regarding the health insurance, mandated the HAS to define a certification procedure for health websites. Article L 161 -38 de la loi n° 2004 -810 du 13 août 2 004 relative à l’assurance maladie : La Haute Autorité de santé est chargée d’établir une procédure de certification des sites informatiques dédiés à la santé, et des logiciels d’aide à la prescription médicale ayant respecté un ensemble de bonnes pratiques. «À compter du 1 er janvier 2006, cette certification est mise en oeuvre et délivrée par un organisme accrédité attestant du respect des règles de bonne pratique édictées par la Haute Autorité de santé. Décret n° 2004 -1139 du 26 octobre 2004 relatif à la Haute Autorité de santé Article R 161 -75 La Haute Autorité de santé détermine les règles de bonne pratique devant être respectées par les sites informatiques dédiés à la santé et les logiciels d’aide à la prescription médicale pour lesquels la certification mentionnée à l’article L. 161 -38 est demandée. Elle définit les modalités de cette certification.

An example of a certified website www. healthonnet. org Orphanet : the portal for rare diseases and orphan drugs A logo linked to a dynamic, unique and dated certificate

www. healthonnet. org Certification achieved within the collaboration with France

www. healthonnet. org WEB EVOLUTION

www. healthonnet. org Social Networking HONcode Complementarity Indicate the qualifications of the moderators Indicate if the platform is moderated or not Respect and Honesty Information should support, not replace, doctorpatient relationship; Audience. Age limitation Privacy Disclose that posted message are visible for all Disclose if posts can be modified, or deleted Attribution The platform rules must be easily accessible from the platform’s homepage. Justifiability Disclose conflict of interests Transparency Disclose email address for web 2. 0 platform members in order to contact the moderators of the forum. Financial disclosure Identify funding sources and if moderators are volunteers or not Sponsorship Clearly distinguish advertising from editorial content Authoritativeness http: //www. HON. ch/HONcode/ Engage sites to disclose rules managing the collaborative platform Rules for collaborative platforms useful for 91% of the social networks

www. healthonnet. org SEARCH ENGINE TECHNOLOGIES OF HON

www. healthonnet. org HONcode search engine 23 © 2010 Foundation Health On the Net

www. healthonnet. org Automatic detection of HONcode principles of health web pages Identified automatically the HONcode principles within a site Search engine with filtering options: HONcode principles, readability levels

www. healthonnet. org CONCLUSION

www. healthonnet. org International recognition In 2002, HON Foundation was recognized as a non-governmental organization and granted special consultative status with the United Nations Economic and Social Council In May 2004, HON won the «e. Europe Award for e. Health» Since 2007, in France, HON is the official certifying organisation for French health websites

www. healthonnet. org Conclusion Active for over 15 years Educate citizens to efficiently use the medical information Automatic tools developed in order to support human expertise and tackle the large number of existing Web pages HON implement the 2001 e. Europe Quality Criteria for Health Web sites, based on the HONcode principles Collaboration with the French Health Authority for the certification of health Web sites in France Adherence to the HONcode enhances a website’s overall quality

www. healthonnet. org Medical information analysis and retrieval www. healthonnet. org/kpat/ European project: FP 7 – 257528 28