JOURNAL OF MEDICAL INTERNET RESEARCH Rippen & Risk

Policy Proposal

e-Health Code of Ethics (May 24)

Helga Rippen, MD, PhD; Ahmad Risk, MD
Corresponding Authors:
Helga Rippen, MD, PhD
Internet Healthcare Coalition
USA
Email: [email protected]
Ahmad Risk, MD
Internet Healthcare Coalition
USA
Email: [email protected]

Abstract
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 [1] 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) doi: 10.2196/jmir.2.2.e9

KEYWORDS
Internet; Ethics; Quality of Health Care

have obligations to be trustworthy, provide high quality content,

Vision Statement protect users' privacy, and adhere to standards of best practices
The goal of the e-Health Code of Ethics is to ensure that people for online commerce and online professional services in health
worldwide can confidently and with full understanding of known care.
risks realise the potential of the Internet in managing their own People who use Internet health sites and services share a
health and the health of those in their care. responsibility to help assure the value and integrity of the health
Internet by exercising judgment in using sites, products, and
Introduction services, and by providing meaningful feedback about online
health information, products, and services.
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
Definitions
and administrators, researchers, those who create or sell health Health information includes information for staying well,
products or services, and other stakeholders-must join together preventing and managing disease, and making other decisions
to create a safe environment and enhance the value of the related to health and health care.
Internet for meeting health care needs.
• It includes information for making decisions about health
Because health information, products, and services have the products and health services.
potential both to improve health and to do harm, organisations • It may be in the form of data, text, audio, and/or video.
and individuals that provide health information on the Internet

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• It may involve enhancements through programming and billing for services, etc.; and other services provided to support
interactivity. health care.
Health products include drugs, medical devices, and other goods Health services also include listserves, bulletin boards, chat
used to diagnose and treat illnesses or injuries or to maintain rooms, and other online venues for the exchange of health
health. Health products include both drugs and medical devices information.
subject to regulatory approval by agencies such as the U.S. Food
Like health information, health services may be in the form of
and Drug Administration or U.K. Medicines Control Agency
data, text, audio, and/or video, and may involve enhancements
and vitamin, herbal, or other nutritional supplements and other
through programming and interactivity.
products not subject to such regulatory oversight.
Anyone who uses the Internet for health-related reasons has
Health services include specific, personal medical care or advice;
a right to expect that organisations and individuals who
management of medical records; communication between health
provide health information, products or services online will
care providers and/or patients and health plans or insurers, or
uphold the following guiding principles:
health care facilities regarding treatment decisions, claims,
Guiding Principles

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Table 1. Guiding Principles

1. Disclose information that if Candor
known by consumers would likely People who use the Internet for health-related purposes need to be able to judge for themselves that the sites
affect consumers' understanding or they visit and services they use are credible and trustworthy. Sites should clearly indicate
use of the site or purchase or use of • who owns or has a significant financial interest in the site or service
a product or service. • what the purpose of the site or service is
For example, whether it is solely educational, sells health products or services, or offers personal medical
care or advice
• any relationship (financial, professional, personal, or other) that a reasonable person would believe would
likely influence his or her perception of the information, products, or services offered by the site
For example, if the site has commercial sponsors or partners, who those sponsors/partners are and whether
they provide content for the site

2. Be truthful and not deceptive Honesty

People who seek health information on the Internet need to know that products or services are described truth-
fully and that information they receive is not presented in a misleading way. Sites should be forthright
• in all content used to promote the sale of health products or services
• in any claims about the efficacy, performance, or benefits of products or services
They should clearly distinguish content intended to promote or sell a product, service, or organisation from ed-
ucational or scientific content.
3. Provide health information that Quality
is accurate, easy to understand, and To make wise decisions about their health care, people need and have the right to expect that sites will provide
up to date. 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
• evaluate information rigorously and fairly, including information used to describe products or services
• provide information that is consistent with the best available evidence
• assure that when personalized medical care or advice is provided that care or advice is given by a qualified
practitioner
• indicate clearly whether information is based on scientific studies, expert consensus, or professional or
personal experience or opinion
• acknowledge that some issues are controversial and when that is the case make good faith efforts to present
all reasonable sides in a fair and balanced way
For example, advise users that there are alternative treatments for a particular health condition, such as surgery
or radiation for prostate cancer
Information and services must be easy for consumers to understand and use. Sites should present information
and describe products or services
• in language that is clear, easy to read, and appropriate for intended users
For example, in culturally appropriate ways in the primary language (or languages) of the site's expected
audience
• in a way that accommodates special needs users may have
For example, in large type or through audio channels for users whose vision is impaired
Sites that provide information primarily for educational or scientific purposes should guarantee the independence
of their editorial policy and practices by assuring that only the site's content editors determine editorial content
and have the authority to reject advertising that they believe is inappropriate.
Consumers have a right to expect that the information they receive is up to date. Sites should clearly indicate
• when the site published the information it provides (and what version of the information users are seeing
if it has been revised since it was first published)
• when the site most recently reviewed the information
• whether the site has made substantive changes in the information and if so, when the information was most
recently updated

and
Provide the information users need Individuals need to be able to judge for themselves the quality of the health information they find on the Internet.
to make their own judgments about Sites should describe clearly and accurately how content is developed for the site by telling users
the health information, products, or • what sources the site or content provider has used, with references or links to those sources
services provided by the site. • how the site evaluates content and what criteria are used to evaluate content, including on what basis the
site decides to provide specific links to other sites or services
For example, by describing the site's editorial board and policies
When health products or services are subject to government regulation, sites should tell users whether those
products (such as drugs or medical devices) have been approved by appropriate regulatory agencies, such as
the U.S. Food and Drug Administration or U.K. Medicines Control Agency

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4. Respect users' right to determine Informed Consent

whether or how their personal data People who use the Internet for health-related reasons have the right to be informed that personal data may be
may be collected, used, or shared. 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 ac-
tively engage in a commercial relationship.
Sites should clearly disclose
• that there are potential risks to users' privacy on the Internet
For example, that other organisations or individuals may be able to collect personal data when someone
visits a site, without that site's knowledge; or that some jurisdictions (such as the European Union) protect
privacy more stringently than others
Sites should not collect, use, or share personal data without the user's specific affirmative consent. To assure
that users understand and make informed decisions about providing personal data, sites should indicate clearly
and accurately
• what data is being collected when users visit the site
For example, data about which parts of the site the user visited, or the user's name and email address, or
specific data about the user's health or online purchases
• who is collecting that data
For example, the site itself, or a third party
• how the site will use that data
For example, to help the site provide better services to users, as part of a scientific study, or to provide
personalised medical care or advice
• whether the site knowingly shares data with other organisations or individuals and if so, what data it shares
• which organisations or individuals the site shares data with and how it expects its affiliates to use that data
For example, whether the site will share users' personal data with other organisations or individuals and
for what purposes, and note when personal data will be shared with organizations or individuals in other
countries
• obtain users affirmative consent to collect, use, or share personal data in the ways described
For example, to collect and use the visitor's personal data in scientific research, or for commercial reasons
such as sending information about new products or services to the user, or to share his or her personal data
with other organisations or individuals
• what consequences there may be when a visitor refuses to give personal data
For example, that the site may not be able to tailor the information it provides to the visitor's particular
needs, or that the visitor may not have access to all areas of the site
"E-commerce" sites have an obligation to make clear to users when they are about to engage in a commercial
transaction and to obtain users' specific affirmative consent to participate in that commercial transaction.
5. Respect the obligation to protect Privacy
users' 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 in-
appropriate disclosure can be grave. To protect users, sites that collect personal data should
• take reasonable steps to prevent unauthorised access to or use of personal data
For example, by "encrypting" data, protecting files with passwords, or using appropriate security software
for all transactions involving users' personal medical or financial data
• make it easy for users to review personal data they have given and to update it or correct it when appropriate
• adopt reasonable mechanisms to trace how personal data is used
For example, by using "audit trails" that show who viewed the data and when
• tell how the site stores users' personal data and for how long it stores that data
• assure that when personal data is "de-identified" (that is, when the user's name, email address, or other
data that might identify him or her has been removed from the file) it cannot be linked back to the user

6. Respect fundamental ethical Professionalism in Online Health Care

obligations to patients and clients. Physicians, nurses, pharmacists, therapists, and all other health care professionals who provide specific, personal
medical care or advice online should
• abide by the ethical codes that govern their professions as practitioners in face-to-face relationships
• do no harm
• put patients' and clients' interests first
• protect patients' confidentiality
• clearly disclose any sponsorships, financial incentives, or other information that would likely affect the
patient's or client's perception of professional's role or the services offered
• clearly disclose what fees, if any, will be charged for the online consultation and how payment for services
is to be made
• obey the laws and regulations of relevant jurisdiction(s), including applicable laws governing professional
licensing and prescribing

and

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Inform and educate patients and The Internet can be a powerful tool for helping to meet patients' health care needs, but users need to understand
clients about the limitations of on- that it also has limitations. Health care professionals who practice on the Internet should clearly and accurately
line health care. • identify themselves and tell patients or clients where they practice and what their professional credentials
are
• describe the terms and conditions of the particular online interaction
For example, whether the health care professional will provide general advice about a particular health
condition or will make specific recommendations and or referrals for the patient or client, or whether the
health care professional can and will or cannot and will not prescribe medications in the particular situation
• make good faith efforts to understand the patient's or client's particular circumstances and to help him or
her identify health care resources that are available locally
For example, to help the patient or client determine whether particular treatment is available in his or her
home community or only from providers outside his or her community
• give clear instructions for follow-up care when appropriate or necessary
Health care professionals who offer personal medical services or advice online should
• clearly and accurately describe the constraints of online diagnosis and treatment recommendations
For example, providers should stress that because the online health care professional cannot examine the
patient, it is important for patients to describe their health care needs as clearly they can
• help "e-patients" understand when online consultation can and when it cannot and should not take the place
of a face-to-face interaction with a health care provider

7. Ensure that organisations and Responsible Partnering

sites with which they affiliate are People need to be confident that organisations and individuals who operate on the Internet undertake to partner
trustworthy. only with trustworthy individuals or organisations. Whether they are for-profit or nonprofit, sites should
• make reasonable efforts to ensure that sponsors, partners, or other affiliates abide by applicable law and
uphold the same ethical standards as the sites themselves
• insist that current or prospective sponsors not influence the way search results are displayed for specific
information on key words or topics
And they should indicate clearly to users
• whether links to other sites are provided for information only or are endorsements of those other sites
• when they are leaving the site
For example, by use of transition screens

8. Provide meaningful opportunity Accountability

for users to give feedback to the site. 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
• indicate clearly to users how they can contact the owner of the site or service and/or the party responsible
for managing the site or service
For example, how to contact specific manager(s) or customer service representatives with authority to address
problems
• provide easy-to-use tools for visitors to give feedback about the site and the quality of its information,
products, or services
• review complaints from users promptly and respond in a timely and appropriate manner
Sites should encourage users to notify the site's manager(s) or customer service representatives if they believe
that a site's commercial or noncommercial partners or affiliates, including sites to which links are provided,
may violate law or ethical principles.
and
Monitor their compliance with the e-Health sites should describe their policies for self-monitoring clearly for users, and should encourage creative
e-Health Code of Ethics. problem solving among site staff and affiliates.

Acknowledgments
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.

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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.

Reference
1. ; e-Health Ethics Initiative. e-Health Ethics Draft Code. J Med Internet Res 2000;2(1):e2 [FREE Full text] [doi:
10.2196/jmir.2.1.e2]

###Reviewer names will be inserted here### Submitted 18.05.00; published 24.05.00.

Please cite as:
Rippen H, Risk A
e-Health Code of Ethics (May 24)
J Med Internet Res 2000;2(2):e9
URL: http://www.jmir.org/2000/2/e9/
doi: 10.2196/jmir.2.2.e9
PMID: 11720928

© 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
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