Vision Statement e-Health Code of Ethics 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. 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: Guiding Principles Table 1 Guiding Principles 1. Candor who owns or has a significant financial interest in the site 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. Honesty 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 3. Quality 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 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 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 to make their own judgments about the health information, products, or services provided by the site. what sources the site or content provider has used, with references or links to those sources 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 4. Informed Consent 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 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 5. Privacy 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 obligations to patients and clients. Professionalism in Online Health Care 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 Inform and educate patients and clients about the limitations of online 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 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. Responsible Partnering 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 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. Accountability 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 and 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.