célia boyer pour la journée e-health 2013
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www.healthonnet.org
Célia Boyer
Executive Director
La vision d’une ONG
When the quality of health information matters:
Health on the Net is the Quality Standard for
Information You can Trust
Celia Boyer, Executive Director
Health On the Net Foundation, Geneva, Switzerland
Sierre, June the 7th, 2013 [email protected]
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Health information online : a reality or a myth
The Internet is a mainstream media? 10 years ago, 608 million
people reported using the Internet worldwide. Today, that figure is
2.4 billion people.
In 2012, 79% of the Swiss population has used the Internet
Looking for health info is the 3rd most common activity
80% American internet users have searched for at least 1 of 17
health topics.
84% of respondents in a Swiss survey always look for health
information on the Internet
Patients with chronic diseases are increasingly using the Internet
more as an aid to their choice of therapy, but only 15% said they
check
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1 Bundesamt für Statistik
2 Swisscom 2011
3 E-patients With a Disability or Chronic Disease,
Oct. 2007, Pew internet & American Life project
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eHealth trends
Quality Health information
Health avatars
Social web and communities
Mobile health
Serious games
Perspectives and Conclusion
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World Health Assembly resolution on
eHealth standardization and Internet domain names
May 27, 2013
Delegates approved a resolution on eHealth standardization and
interoperability. Member States noted the importance of standardized,
accurate, timely data and health information to the functioning of health
systems and services, while also highlighting that the security of this
information, and privacy of personal clinical data, must be protected.
The resolution further emphasizes that health-related global top-level
domain names, including “.health”, should be operated in a way that
protects public health and is consistent with global public health
objectives, and that names and acronyms of intergovernmental
organizations, including WHO, be protected in the Internet Domain Name
System.
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Pew Internet & American Life Project - 2013 report
“Eight in ten online health inquiries
start at a search engine”
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[1] Cyberchondria: Studies of the Escalation of Medical Concerns in Web Search, Microsoft, Dec
2008
What are the main problems in using the Internet for
health?
Background
Overload with information quantity
Lack of skills to judge the information quality
“Seen on Internet” seems to be a sign of quality
Outcomes
Decision based on inadequate information
Increased anxiety after consulting the Internet for health information
Growing physician mistrust
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The Health On the Net
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
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The Health On the Net Foundation: History
1996
1995
International Working Conference on
the Use of Internet and World-Wide
Web for Telematics in Healthcare
State of Geneva… European Commission… Haute Autorité de Santé …
2002
NGO status
granted by the
United Nations
2004
eEurope Award
eHealth
2007, France
Official certification
body of all French
health websites
ISO
2010
ISO TC 215
Health
Informatics
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The HONcode
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The HONcode allow the web user to judge if
she/he can trust the information found.
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Example of certified website
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Site not certifid
Reference from 1983
Intentionally missing
information
Tendentious
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Health site of quality is possible only on
the voluntary respect of ethical rules
based on the transparency of the
information.
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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
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Certificat dynamique, unique et daté
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Le Web n’a pas de frontière,
la certification non plus
« HONcode is the oldest and most-used ethical and
trustworthiness code for medical and
health-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.
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The HONcode database
Compliance with the HONcode
principles
Indexed with MeSH terms and HON
labels
+8’000 sites in 102 countries
correspond à plus de 10 millions de
pages indexées dans Google
5 millions de pages avec le certificat
HONcode sont vues chaque jour
+1800 sites in France
+ 300 sites Switzerland
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Access to quality health information is
fundamental for a wise decision making
process
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Identification of certified websites
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European research project for improving the
access of health information for the citizen
and the health professionals
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eHealth trends
Quality Health information
Health avatars
Social web and communities
Mobile health
Serious games
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Healthtap.com: free medical advice
Goal: A new way to deliver information direct to the user needs
answered by trained physicians
Benefit: education and advice through ecommunication
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The Health avatar :
Goal: organize health information
according to its relationships to the
human anatomy.
Benefits: enables patients and
clinicians to find information quickly
and intuitively (e.g. “show where it
hurts”)
27 http://healthcorpus.com
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Patient-to-patient network
Health2.0
Patient-to-patient communication is gradually increasing
Allows comparison of different patient experiences, provides
support and empathy, social network of like-minded persons.
Enables patients with same medical condition to interact, share
their symptoms, track their progress and connect in multiple ways.
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www.patientslikeme.com
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Goal: Share and compare experiences between patients on common disease
Benefits: improve their decision making and help managing their disease
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Compare treatment options
Self-reported rating of side effects
Evaluate effectiveness of different therapies
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Pew Internet & American Life Project - Survey Aug-Sep 2012 – Tracking for health report Jan. 2013
Seven in ten U.S. adults track a health
indicator like weight, diet, exercise
routine, or symptom. Of those, half
track “in their heads,” one-third keep
notes on paper, and 20%use technology
to keep tabs on their health status
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87% US adults own a cell phone.
45% of them own smart phones.
31% of cell phone owners and 52% smart phone owners have
used their phone to look up health/medical information.
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mHealth offers patients easier
access to care and control over
their own health.
59% of those who use mHealth
already say it has replaced
visits to doctors or nurses.
64% worry that mHealth makes
patients too independent.
Problem: who check the
medical validity or the
transparency of these apps
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Serious Gaming
Serious games are video games which are simulations of real-
world events with the main intention of educating or training its
user.
Goal: increase better understanding / compliance
Benefit: Through self valorisation, educate and change behavior
Used in several sectors including healthcare and education
psychotherapy, healthcare training, physical rehabilitation
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An example of a certified serious game
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How has the Internet is changing healthcare?
Healthcare consumer perspective:
Access to health information
Patient empowerment
Enables active participation in healthcare decision making
Improved doctor patient interaction
Access to co-sufferers (patient-to-patient communication).
Healthcare provider perspective:
Better informed patients results in improved compliance
Recognition of healthcare consumer as partner in healthcare decision making
Improved access to health information
Telemedicine and diagnostics
Training and continuing education
Minimally invasive procedures
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HON Conclusion
HON active for over 17 years
Educate citizens to efficiently use the medical information
Guide the information providers
Automatic tools developed in order to support human expertise and
tackle the large number of existing Web pages
Collaboration 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 HONcode
certification do actually respect the eight HONcode ethical standards” Improving the transparency of health information found on the internet through the honcode: a
comparative study. Laversin S et al. Stud Health Technol Inform. 2011;169:654-8
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Le HONcode une référence internationale
“Finally, 15 (63%) PHR systems were based on regulations or principles
such 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 provide
an 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’ websites
can be improved.” Urologists in cyberspace: A review of the quality of health information from American urologists' websites
using three validated tools.Wong LM, Yan H . et al. Can Urol Assoc J. 2013;7(3-4):100-7
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Merci pour votre attention
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Perspectives
Etendre le processus de certification avec l’évaluation du contenu
par les internautes (patients, médecins, associations médicales)
Notation
Recommandation d’informations santé
Création et partage de bookmarks
HONcode comme socle fondateur
Nouveaux sites certifiés par HON
Equipe spécialisée dans le contenu médical
Développement d’outils spécialisés d’accès à l’information (moteurs
de recherches spécialisés et spécifiques)
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