25 june 2003 afgis health information on the internet more ... · steps toward reliable information...

Steps toward reliable information on the Web

Célia Boyer, Executive Director

25 june 2003AFGIS

Health Information on the Internet

More safety by Enhanced quality

Non-Governmental Organisation

http://www.hon.ch/

http://www.hon.ch

HON’s mission:

to guideto guide the growing community of healthcare consumers and providers on the World Wide Web to sound, reliable reliable medical informationmedical information and expertise. In this way, HON seeks to contribute to better, more accessible and cost-effective health care.

http://www.hon.ch

Health Information on the Web

• The Internet exists

• Medical information on the Internet exists

• Information quality is a real problem

• Solving the problem

http://www.hon.ch

1. Internet exists

• Users on the Internet Jan 2003

• Computer connected on the Internet• Jul 1993 1,776,000 • Jan 1999 43,230,000 • Jan 2003 162,128,493

http://www.hon.ch

2. Medical and Health information on the Web exists

http://www.hon.ch

2. Medical Information on the Internet

• Spread to roughly 580 million people

• Spread by those same people

• False and misleading information can be spread over the Internet

http://www.hon.ch

3. Information quality is a problem

• Where is the information?

• Is it correct?

http://www.hon.ch

4. Solving the problem: HON realisations

• Ongoing research: – EU project WRAPIN– EU project ActiveHealth

• Specialised search engine and directory

• HON Code of Conduct

http://www.hon.ch

4. HON realisations

• Ongoing research: – EU project WRAPIN– EU project ActiveHealth

• Specialised search engine and directory

• HON Code of Conduct

http://www.hon.ch

WRAPIN:Improve literacy & access to quality information

World-Wide online Reliable Advice to Patients and IndividualsEU project: IST-2001-33260 – Two years (Sep 2001- Aug 2003)

http://www.hon.chWorld-Wide online Reliable Advice to Patients and IndividualsEU project: IST-2001-33260 – Two years (Sep 2001- Aug 2003)

http://www.hon.chWorld-Wide online Reliable Advice to Patients and IndividualsEU project: IST-2001-33260 – Two years (Sep 2001- Aug 2003)

http://www.hon.ch

4. HON realisations

• Ongoing research: – EU project WRAPIN– EU project ActiveHealth

• Specialised search engine and directory

• HON Code of Conduct

http://www.hon.ch

MedHunt: free search within approximately 75,000 documents

HONmedia: 3000 imagesconcenring 1800 different topics

Conferences: forthcoming events classed by date, location, theme, ...

HON also proposes dossiers concerning specific subjects: allergies, children and rare diseases.

HON Specialised search engines:a sort of “Michelin guide of the Web”

HONselect: Medical encyclopaedia containing33’000 medical terms in 5 languagesDirect access to trustworthy sources:DB ext.: Medline articles ,

clinical trials, newsDB HON: Web-sites, images,

Conferences

HONcodeHunt:trustworthy Websites adhering to the HONcode principles

http://www.hon.ch

4. HON realisations

• Ongoing research: – EU project WRAPIN– EU project ActiveHealth

• Specialised search engine and directory

• HON Code of Conduct

http://www.hon.ch

How do we trust information?

From the author

From knowledgeable references

By a recognised organisation

Decentralised validation

http://www.hon.ch

Concise code of conduct: 8 principles

Purpose

Pioneer since 1996

Creation of a confidence space HONcode accreditation: Ethics and trustworthiness

Accreditation systemValid methodology

- In service since 1997 - Formal application process- Manual verification process- Active verification process- Monitoring

Coverage and samples:3300+ sites accredited in 67 countriesFrom the most important to smallest organisation

- MEDLINEplus- Healthfinder.gov- InteliHealth- Stop-tabac.ch

http://www.hon.ch

HONcode purpose

• Broadest-possible relevance

• “Floor” for ethical standards

• Offer measure of quality reassurance

• Promote shared responsibility and trustworthiness

• Stay responsive and market-oriented

http://www.hon.ch

HONcode obliges sites to...

• If medical advice, say if it’s by a doctor or not • Support, not replace, doctor-patient relations • Keep user data confidential• Justify claims about benefits & performance• Refer properly to source information• Identify site developers, authors &

Webmaster• Present financial backers• Clearly separate advertising from editorial

http://www.hon.ch

Becoming a member (it is free)

1. Voluntary application request: commits to respect the HONcode

2. Compliance review by the committee

3. Modification & improvements as necessary

4. HON delivers the HONcode Dynamic Seal

5. Result : We subscribe to the HONcode principles.Verify here.

http://www.hon.ch

Search only accredited sites

Although there are severalantiangiogenesis clinical trials in

progress they are all in very early stages of testing. These drugs are not

administered orally.

Potential consumers, however, should be aware that the effectiveness of shark cartilage has not been demonstrated scientifically.

After revision by the HON team the site status demonstratescompliance with the HONcode.

http://www.hon.ch

HONcode policing

• Procedure triggered by Web users or HON– Average of 5 user complaints per month

• “They don’t deserve it!” • Request to arbitrate disputes, e.g. on copyright

• Alert sent to offending site via email• Warning if no compliance after 30 days• If warning ignored, HON demands seal’s

removal– Unique ID number withdrawn

• Cut-off: Seal on offending site is “rewired”– Link states that site is “not a bona fide member”

http://www.hon.ch

HONcode Facts

• Used by over 3,300 web sites in 67 countries

• Referenced by 20’000 servers, on 95’000 pages

• Percentage of site « HONcode »:– North America: 52%, Europe: 36%

• In May: +50’000 visits

• HONcode available in 26 languages

http://www.hon.ch

Ongoing education: prudent navigation

• Web publisher– Bring the site into conformity by notification of non-

compliant aspects and shortcomings

– Accreditation as a reward

• Patient education: the healthy Internet– Detector of HONcode Web sites integrated to the

navigator

– HON patient Page for an intelligent use of the Internet when seeking health information & Hints help sort out suspect information

http://www.hon.ch

HON Facts

May 2003

In May 2003, www.HON.ch visited by more than 350’000 people from 80 countries who consulted approximately2 million pages

July 2002, Health On the Net granted NGO status by Economic

and Social Council of the United Nations

Visitor is identified by an IP address which is counted once during one consecutive hour.

http://www.hon.ch

http://www.hon.ch/

Powered byDépartement de l’Action

Sociale et de Santé, Genève

Under the auspices of: