Célia Boyer pour la journée e-health 2013

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  • 1. www.healthonnet.orgCélia BoyerExecutive DirectorLa vision d’une ONGWhen the quality of health information matters:Health on the Net is the Quality Standard forInformation You can TrustCelia Boyer, Executive DirectorHealth On the Net Foundation, Geneva, SwitzerlandSierre, June the 7th, 2013Celia.Boyer@HealthOnNet.org
  • 2. www.healthonnet.orgHealth information online : a reality or a mythThe Internet is a mainstream media? 10 years ago, 608 millionpeople reported using the Internet worldwide. Today, that figure is2.4 billion people.In 2012, 79% of the Swiss population has used the InternetLooking for health info is the 3rd most common activity80% American internet users have searched for at least 1 of 17health topics.84% of respondents in a Swiss survey always look for healthinformation on the InternetPatients with chronic diseases are increasingly using the Internetmore as an aid to their choice of therapy, but only 15% said theycheck21 Bundesamt für Statistik2 Swisscom 20113 E-patients With a Disability or Chronic Disease,Oct. 2007, Pew internet & American Life project
  • 3. www.healthonnet.orgeHealth trendsQuality Health informationHealth avatarsSocial web and communitiesMobile healthSerious gamesPerspectives and Conclusion3
  • 4. www.healthonnet.orgWorld Health Assembly resolution oneHealth standardization and Internet domain namesMay 27, 2013Delegates approved a resolution on eHealth standardization andinteroperability. Member States noted the importance of standardized,accurate, timely data and health information to the functioning of healthsystems and services, while also highlighting that the security of thisinformation, and privacy of personal clinical data, must be protected.The resolution further emphasizes that health-related global top-leveldomain names, including “.health”, should be operated in a way thatprotects public health and is consistent with global public healthobjectives, and that names and acronyms of intergovernmentalorganizations, including WHO, be protected in the Internet Domain NameSystem.4
  • 5. www.healthonnet.orgPew Internet & American Life Project - 2013 report“Eight in ten online health inquiriesstart at a search engine”5
  • 6. www.healthonnet.org[1] Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search, Microsoft, Dec2008What are the main problems in using the Internet forhealth?BackgroundOverload with information quantityLack of skills to judge the information quality“Seen on Internet” seems to be a sign of qualityOutcomesDecision based on inadequate informationIncreased anxiety after consulting the Internet for health informationGrowing physician mistrust
  • 7. www.healthonnet.orgThe Health On the NetMission: HON guides Internet users by highlighting reliable,comprehensible, relevant and trustworthy sources of online healthand medical information, tackling the major obstacle of Web:the overwhelming quantity of informationthe uneven quality of health information available online7
  • 8. www.healthonnet.orgThe Health On the Net Foundation: History19961995International Working Conference onthe Use of Internet and World-WideWeb for Telematics in HealthcareState of Geneva… European Commission… Haute Autorité de Santé …2002NGO statusgranted by theUnited Nations2004eEurope AwardeHealth2007, FranceOfficial certificationbody of all Frenchhealth websitesISO2010ISO TC 215HealthInformatics
  • 9. www.healthonnet.orgThe HONcode
  • 10. www.healthonnet.orgThe HONcode allow the web user to judge ifshe/he can trust the information found.10
  • 11. www.healthonnet.org11Example of certified website11
  • 12. www.healthonnet.orgSite not certifidReference from 1983Intentionally missinginformationTendentious12
  • 13. www.healthonnet.orgHealth site of quality is possible only onthe voluntary respect of ethical rulesbased on the transparency of theinformation.13
  • 14. www.healthonnet.orgThe HONcode CertificationTHE PROCESSThe HONcode certification is requested by the Web publisher witha self-evaluation stepThe HONcode Review Committee conducts a thorough inspectionand provide recommendationsTransparency of the certification: excerpts of proofDeliver the HONcode seal
  • 15. www.healthonnet.orgCertificat dynamique, unique et daté17
  • 16. www.healthonnet.orgLe Web n’a pas de frontière,la certification non plus« HONcode is the oldest and most-used ethical andtrustworthiness code for medical andhealth-related information available on the Internet.»I. Carrión, J. Fernández, A. Toval Are Personal Health Records Safe? A Review of Free Web-Accessible Personal Health Record Privacy Policies, JMIR, 2012, 14(4): e114.
  • 17. www.healthonnet.orgThe HONcode databaseCompliance with the HONcodeprinciplesIndexed with MeSH terms and HONlabels+8’000 sites in 102 countriescorrespond à plus de 10 millions depages indexées dans Google5 millions de pages avec le certificatHONcode sont vues chaque jour+1800 sites in France+ 300 sites Switzerland
  • 18. www.healthonnet.orgAccess to quality health information isfundamental for a wise decision makingprocess20
  • 19. www.healthonnet.orgIdentification of certified websites21
  • 20. www.healthonnet.orgEuropean research project for improving theaccess of health information for the citizenand the health professionals23
  • 21. www.healthonnet.orgeHealth trendsQuality Health informationHealth avatarsSocial web and communitiesMobile healthSerious games24
  • 22. www.healthonnet.orgHealthtap.com: free medical adviceGoal: A new way to deliver information direct to the user needsanswered by trained physiciansBenefit: education and advice through ecommunication25
  • 23. www.healthonnet.org26
  • 24. www.healthonnet.orgThe Health avatar :Goal: organize health informationaccording to its relationships to thehuman anatomy.Benefits: enables patients andclinicians to find information quicklyand intuitively (e.g. “show where ithurts”)27http://healthcorpus.com
  • 25. www.healthonnet.orgPatient-to-patient networkHealth2.0Patient-to-patient communication is gradually increasingAllows comparison of different patient experiences, providessupport and empathy, social network of like-minded persons.Enables patients with same medical condition to interact, sharetheir symptoms, track their progress and connect in multiple ways.29
  • 26. www.healthonnet.orgwww.patientslikeme.com30Goal: Share and compare experiences between patients on common diseaseBenefits: improve their decision making and help managing their disease
  • 27. www.healthonnet.orgCompare treatment optionsSelf-reported rating of side effectsEvaluate effectiveness of different therapies31
  • 28. www.healthonnet.orgPew Internet & American Life Project - Survey Aug-Sep 2012 – Tracking for health report Jan. 2013Seven in ten U.S. adults track a healthindicator like weight, diet, exerciseroutine, or symptom. Of those, halftrack “in their heads,” one-third keepnotes on paper, and 20%use technologyto keep tabs on their health status32
  • 29. www.healthonnet.org87% US adults own a cell phone.45% of them own smart phones.31% of cell phone owners and 52% smart phone owners haveused their phone to look up health/medical information.
  • 30. www.healthonnet.orgmHealth offers patients easieraccess to care and control overtheir own health.59% of those who use mHealthalready say it has replacedvisits to doctors or nurses.64% worry that mHealth makespatients too independent.Problem: who check themedical validity or thetransparency of these apps35
  • 31. www.healthonnet.orgSerious GamingSerious games are video games which are simulations of real-world events with the main intention of educating or training itsuser.Goal: increase better understanding / complianceBenefit: Through self valorisation, educate and change behaviorUsed in several sectors including healthcare and educationpsychotherapy, healthcare training, physical rehabilitation37
  • 32. www.healthonnet.orgAn example of a certified serious game
  • 33. www.healthonnet.orgHow has the Internet is changing healthcare?Healthcare consumer perspective:Access to health informationPatient empowermentEnables active participation in healthcare decision makingImproved doctor patient interactionAccess to co-sufferers (patient-to-patient communication).Healthcare provider perspective:Better informed patients results in improved complianceRecognition of healthcare consumer as partner in healthcare decision makingImproved access to health informationTelemedicine and diagnosticsTraining and continuing educationMinimally invasive procedures
  • 34. www.healthonnet.orgHON ConclusionHON active for over 17 yearsEducate citizens to efficiently use the medical informationGuide the information providersAutomatic tools developed in order to support human expertise andtackle the large number of existing Web pagesCollaboration with governmental and international organization(OMS)Adherence to the HONcode enhances a website’s overall quality“Less than 1% of health websites that do not ask for HONcodecertification do actually respect the eight HONcode ethical standards”Improving the transparency of health information found on the internet through the honcode: acomparative study. Laversin S et al. Stud Health Technol Inform. 2011;169:654-8
  • 35. www.healthonnet.orgLe HONcode une référence internationale“Finally, 15 (63%) PHR systems were based on regulations or principlessuch as the US Health Insurance Portability and Accountability Act(HIPAA) and the Health on the Net Foundation Code of Conduct(HONcode).CONCLUSIONS: Most privacy policies of PHR systems do not providean in-depth description of the security measures that they use.”Carrión, Fernández, Toval, Are Personal Health Records Safe? A Review of Free Web-Accessible Personal Health Record Privacy Policies, JMIR, 2012, 14(4): e114“In our experience, the HONcode provided the best overall guidance.”“With added increased awareness of available resources, such as the HONcode,DISCERN and LIDA tools, the quality of health information on doctors’ websitescan be improved.”Urologists in cyberspace: A review of the quality of health information from American urologists websitesusing three validated tools.Wong LM, Yan H . et al. Can Urol Assoc J. 2013;7(3-4):100-742
  • 36. www.healthonnet.orgMerci pour votre attention
  • 37. www.healthonnet.orgPerspectivesEtendre le processus de certification avec l’évaluation du contenupar les internautes (patients, médecins, associations médicales)NotationRecommandation d’informations santéCréation et partage de bookmarksHONcode comme socle fondateurNouveaux sites certifiés par HONEquipe spécialisée dans le contenu médicalDéveloppement d’outils spécialisés d’accès à l’information (moteursde recherches spécialisés et spécifiques)44