eHealth Code of Ethics
| Vision Statement | The goal of the eHealth 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. |
| Introduction | 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. |
| Definitions | Health information includes information for staying well, preventing and managing disease, and making other decisions related to health and health
care.
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: | |
| 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
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| 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
They should clearly distinguish content intended to promote or sell a product, service, or organisation from educational or scientific content. |
| Provide health information that is accurate, easy to understand, and up to date.
and |
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, eHealth 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
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
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| 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
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 |
| 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
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
"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. |
| 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
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| Professionalism in Online Health Care | |
| Respect fundamental ethical obligations to patients and clients.
and |
Physicians, nurses, pharmacists, therapists, and all other health care professionals who provide specific, personal medical care or advice online should
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| 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
Health care professionals who offer personal medical services or advice online should
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| 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
And they should indicate clearly to users
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| Provide meaningful opportunity for users to give feedback to the site.
and Monitor their compliance with the eHealth Code of Ethics. |
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. eHealth sites should
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. eHealth sites should describe their policies for self-monitoring clearly for users, and should encourage creative problem solving among site staff and affiliates. |
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© 2000, Internet Healthcare Coalition