John Mack, MA, MS, MPhil 215.504.4164 ihc-president@ihealthcoalition.org President, Internet Healthcare Coalition

1. eHealth Code of Ethics: Consensus and Compliance John Mack, MA, MS, MPhil 215.504.4164 ihc-president@ihealthcoalition.org President, Internet Healthcare Coalition V Latin American and Caribbean Regional Congress on HealthSciences Information (CRICS 5)  25-27 April 2001 • Habana, CUBA

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

4. Code of Ethics: Why Now? You’ve heard of the Law of Diminishing Return How about…?

5. Decreasing concern Concern About Ethics 1/Stock Price Decreasing stock price The Law of Diminishing Concern It’s easy to have principles when you’re rich. The important thing is to have principles when you’re poor. Ray A. Kroc Grub first, then ethics. Bertolt Brecht

6. 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 Coalition’s annual meeting • Available on Coalition web site

7. 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

8. 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

9. 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

10. 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

11. Consensus • Review by Bauer & Deering (HHS) revealed need for consensus • Consensus statement released at Coalition’s 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

12. 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

13. Internet Healthcare Coalition’s 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

14. 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

15. 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

16. 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

17. 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 URAC’s 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

18. 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.html • Ethics Workshop • www.ihealthcoalition.org/content/ethics_wkshp.html