Published on 24.05.00 in Vol 2, No 2 (2000)
Preprints (earlier versions) of this paper are available at http://preprints.jmir.org/preprint/795, first published May 24, 2000.
e-Health Code of Ethics (May 24)
The Internet is changing how people receive health information and health care. All who use the Internet for health-related purposes must join together to create an environment of trusted relationships to assure high quality information and services; protect privacy; and enhance the value of the Internet for both consumers and providers of health information, products, and services. The goal of the e-Health Code of Ethics is to ensure that people worldwide can confidently and with full understanding of known risks realise the potential of the Internet in managing their own health and the health of those in their care. The final e-Health Code of Ethics, presented in this paper, has been prepared as a result of the "e-Health Ethics Summit," which convened in Washington DC on 31 January 2000 - 2 February 2000. The summit, organized by the Internet Healthcare Coalition and hosted by the World Health Organisation/Pan-American Health Organisation (WHO/PAHO), was attended by a panel of about 50 invited experts from all over the world and produced the foundation for a draft code, which was released 18 February  for an online public consultation period which ended on 14 April 2000. The final Washington e-Health Code of Ethics sets forth guiding principles under eight main headings: candor; honesty; quality; informed consent; privacy; professionalism in online health care; responsible partnering; and accountability.
Note: Abstract, keywords, acknowledgements and references have been added by the editor and are not part of the final Code.
J Med Internet Res 2000;2(2):e9
The goal of the e-Health Code of Ethics is to ensure that people worldwide can confidently and with full understanding of known risks realise the potential of the Internet in managing their own health and the health of those in their care.
The Internet is changing how people give and receive health information and health care. All people who use the Internet for health-related purposes-patients, health care professionals and administrators, researchers, those who create or sell health products or services, and other stakeholders-must join together to create a safe environment and enhance the value of the Internet for meeting health care needs.
Because health information, products, and services have the potential both to improve health and to do harm, organisations and individuals that provide health information on the Internet have obligations to be trustworthy, provide high quality content, protect users' privacy, and adhere to standards of best practices for online commerce and online professional services in health care.
People who use Internet health sites and services share a responsibility to help assure the value and integrity of the health Internet by exercising judgment in using sites, products, and services, and by providing meaningful feedback about online health information, products, and services.
Health information includes information for staying well, preventing and managing disease, and making other decisions related to health and health care.
- It includes information for making decisions about health products and health services.
- It may be in the form of data, text, audio, and/or video.
- It may involve enhancements through programming and interactivity.
Health products include drugs, medical devices, and other goods used to diagnose and treat illnesses or injuries or to maintain health. Health products include both drugs and medical devices subject to regulatory approval by agencies such as the U.S. Food and Drug Administration or U.K. Medicines Control Agency and vitamin, herbal, or other nutritional supplements and other products not subject to such regulatory oversight.
Health services include specific, personal medical care or advice; management of medical records; communication between health care providers and/or patients and health plans or insurers, or health care facilities regarding treatment decisions, claims, billing for services, etc.; and other services provided to support health care.
Health services also include listserves, bulletin boards, chat rooms, and other online venues for the exchange of health information.
Like health information, health services may be in the form of data, text, audio, and/or video, and may involve enhancements through programming and interactivity.
Anyone who uses the Internet for health-related reasons has a right to expect that organisations and individuals who provide health information, products or services online will uphold the following guiding principles:
|1. Disclose information that if known by consumers would likely affect consumers\' understanding or use of the site or purchase or use of a product or service.||Candor|
People who use the Internet for health-related purposes need to be able to judge for themselves that the sites they visit and services they use are credible and trustworthy. Sites should clearly indicate
|2. Be truthful and not deceptive||Honesty|
People who seek health information on the Internet need to know that products or services are described truthfully and that information they receive is not presented in a misleading way. Sites should be forthright
|3. Provide health information that is accurate, easy to understand, and up to date.||Quality|
To make wise decisions about their health care, people need and have the right to expect that sites will provide accurate, well-supported information and products and services of high quality.
|To assure that the health information they provide is accurate, e-Health sites and services should make good faith efforts to |
Information and services must be easy for consumers to understand and use. Sites should present information and describe products or services
Consumers have a right to expect that the information they receive is up to date. Sites should clearly indicate
|Provide the information users need to make their own judgments about the health information, products, or services provided by the site.||Individuals need to be able to judge for themselves the quality of the health information they find on the Internet. Sites should describe clearly and accurately how content is developed for the site by telling users|
|4. Respect users\' right to determine whether or how their personal data may be collected, used, or shared.||Informed Consent|
People who use the Internet for health-related reasons have the right to be informed that personal data may be gathered, and to choose whether they will allow their personal data to be collected and whether they will allow it to be used or shared. And they have a right to be able to choose, consent, and control when and how they actively engage in a commercial relationship.
|Sites should clearly disclose |
|5. Respect the obligation to protect users\' privacy.||Privacy|
People who use the Internet for health-related reasons have the right to expect that personal data they provide will be kept confidential. Personal health data in particular may be very sensitive, and the consequences of inappropriate disclosure can be grave. To protect users, sites that collect personal data should
|6. Respect fundamental ethical obligations to patients and clients.||Professionalism in Online Health Care|
Physicians, nurses, pharmacists, therapists, and all other health care professionals who provide specific, personal medical care or advice online should
|Inform and educate patients and clients about the limitations of online health care.||The Internet can be a powerful tool for helping to meet patients\' health care needs, but users need to understand that it also has limitations. Health care professionals who practice on the Internet should clearly and accurately |
|7. Ensure that organisations and sites with which they affiliate are trustworthy.||Responsible Partnering|
People need to be confident that organisations and individuals who operate on the Internet undertake to partner only with trustworthy individuals or organisations. Whether they are for-profit or nonprofit, sites should
|8. Provide meaningful opportunity for users to give feedback to the site.||Accountability|
People need to be confident that organisations and individuals that provide health information, products, or services on the Internet take users\' concerns seriously and that sites make good faith efforts to ensure that their practices are ethically sound. e-Health sites should
|Monitor their compliance with the e-Health Code of Ethics.||e-Health sites should describe their policies for self-monitoring clearly for users, and should encourage creative problem solving among site staff and affiliates.|
The Internet Healthcare Coalition (IHC) provided the framework for the e-Health ethics summit in Washington DC, Jan 31 - Feb 2, 2000, chaired by Helga Rippen and Ahmad Risk.
The following people were participants in the summit:
Jaak Aru; Wendy Borow-Johnson; Mark Boulding; Allan Bruckheim; Mary Cain; Lynn Cates; Richard Cleland; Stefan J. Darmoni; Mary Jo Deering; Markus Dey; Donna Doneski; Gunther Eysenbach; Ruth Faden; Giles Frydman; Bruce Grant; Bruce Grobe; Jon Grohol; James Harris; John Hoben; Tom Houston; Sam Karp; Paul Keckly; Don Kemper; Murray Kopelow; Alex Langermann; Harry A. Levy; George Lundberg; John Mack; Blackford Middleton; Sandi Mitchell; Sybil Ingram Muhammad; Thomas Murray; Beth Nash; Tim Nater; David Nickelson; John Renner; Roberto Rodrigues; Mark Samuels; Michael H. Samuelson; Michael D. Scott; Denise Silber; Bill Silberg; Loretta Skucas; S. Stuart Spector; Mike Squires; Harry Sweeney; David B. Vance; C. Peter Waegemann; Group Facilitators were Kathy Alison, Laura Guyer Miller, Maria Nagorski and Maureen Ponte.
Edited by G. Eysenbach; This is a non-peer-reviewed article. submitted 18.05.00; published 24.05.00
© Helga Rippen, Ahmad Risk. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 24.5.2000. Except where otherwise noted, articles published in the Journal of Medical Internet Research are distributed under the terms of the Creative Commons Attribution License (http://www.creativecommons.org/licenses/by/2.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited, including full bibliographic details and the URL (see "please cite as" above), and this statement is included.