John Mack, MA, MS, MPhil

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eHealth Code of Ethics Consensus and Compliance

• John Mack, MA, MS, MPhil
• 215.504.4164 ihc-president_at_ihealthcoalition.org
• President, Internet Healthcare Coalition

V Latin American and Caribbean Regional Congress
on HealthSciences Information (CRICS 5)  25-27
April 2001 Habana, CUBA
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Agenda

• Introduction
• e-Health Ethics Initiatives
• Consensus and Compliance
• Education and Training

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(No Transcript)
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Code of Ethics Why Now?
Youve heard of the Law of Diminishing
Return How about?
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The Law of Diminishing Concern
Its easy to have principles when youre rich.
The important thing is to have principles when
youre poor. Ray A. Kroc
Grub first, then ethics. Bertolt Brecht
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Ethics Survey
Ethical Issues Awareness of E-Health Site Users
vs. Developers A Different Kind of Digital
Divide?

• Conducted online by Harris Interactive in
  September 2000, sponsored by the Internet
  Healthcare Coalition
• Consumers (Harris panel) vs. Developers
  (Coalition members)
• Results released at Coalitions annual meeting
• Available on Coalition web site

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Ethics Survey Key Results
Respondents believe it is important for Web sites
to disclose information sources, clearly identify
advertising, have healthcare experts review
content, and identify partners who contribute to
or fund the site.
Source Harris Interactive/Internet Healthcare
Coalition survey of US consumers vs webmasters,
September 2000
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Public Supports Self-Regulation
Respondents believe Web sites should follow a set
of self-governing standards.
Source Harris Interactive/Internet Healthcare
Coalition survey of US consumers vs webmasters,
September 2000
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Ethics Survey - Conclusions

• Industry messages not reaching consumer
• Consumers operating in a vacuum
• Inconsistent use of standards by sites
• Effective communication to consumers about ethics
  essential for assurance
• Without assurances full potential of Internet
  will not be realized

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e-Health Ethics Initiatives
Ethics standards and guidelines for Internet
health sites are being developed and promoted by
several organizations.

• Health On the Net Foundation
• Internet Healthcare Coalition
• Hi-Ethics Alliance
• AMA

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Consensus

• Review by Bauer Deering (HHS) revealed need for
  consensus
• Consensus statement released at Coalitions
  annual conference
• Signatories AMA, Internet Healthcare Coalition,
  Hi-Ethics, HON
• Establish a coordinating committee to collaborate
  on ethical conduct codes
• Develop a common glossary of definitions and
  terms for verification and compliance efforts
• Differing categories of health Web sites may
  continue to require a variety of seal or
  certification programs

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Internet Healthcare Coalition

• 501c3 Non-profit formed in 1997
• International and broad-based membership
• Educational Mission
• Projects include
• e-Health Code of Ethics
• e-Health ethics research and publications
• Health fraud on the Internet
• Tips for consumers
• Annual conference
• Ethics training workshops

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Internet Healthcare Coalitions Approach to
Ethics Guidelines

• Consensus by open discussion
• Broad membership and participation
• Guidelines for entire Internet health arena
• Strong input from healthcare ethicists
• Hastings Center
• The Bioethics Institute (Johns Hopkins)
• Written for developers of health web sites and
  other Internet-based services

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e-Health Code of Ethics Principles

• Candor
• Ownership, financial disclosures
• Honesty
• Truthful claims, no fraud
• Quality
• Accurate, easy to understand, up to date
• Informed Consent
• Disclose data collected, data sharing, opt-in

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e-Health Code of Ethics Principles
Continued

• Privacy
• Provide security, access, audit
• Professionalism in Online Health Care
• Disclose credentials, describe constraints
• Responsible Partnering
• Linking policy, choose ethical partners
• Accountability
• Provide means for contact and feedback

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Compliance and Certification

• URAC American Accreditation Healthcare
  Commission
• Standards based on e-Health Code of Ethics
• Public Web Advisory Committee appointed
• Training in association with Internet Healthcare
  Coalition
• TRUSTe
• Standards based on Hi-Ethics principles
• e-Health seal program
• PriceWaterhouse Coopers audit
• MedCERTAIN
• Uses a consensus set of quality standards
• Funded by European Union
• International Trustmark
• Decentralized system

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Ethics Training Workshop e-Health Ethics Getting
Ready to Do Business on the Net

• Developed by the Internet Healthcare Coalition in
  Association with the Center for Ethics in Health
  Care
• First presented at URACs spring conference in
  May 2001
• Topics covered
• The eHealth Code of Ethics
• Contemporary Healthcare Business Ethics
• Case Illustration Candor, Honesty, Quality, and
  Accountability
• The eHealth Code and Corporate Ethics
• Case Illustration Privacy, Informed Consent,
  Professionalism, Responsible Partnering
• Creating an Organizational Culture that
  Encourages Ethical Behavior
• Organizational Stories A Basis for Ethical
  e-Health Practice
• Ethical Leadership
• Role of Ethical Decision-making in e-Health

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URLs

• Internet Healthcare Coalition
• www.ihealthcoalition.org
• e-Health Code of Ethics
• www.ihealthcoalition.org/ethics/ehcode.html
• Quality Health Information on the Net 2000
  Conference Archives
• www.ihealthcoalition.org/community/program2000.htm
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• Ethics Workshop
• www.ihealthcoalition.org/content/ethics_wkshp.html