Key words: ethics, e-Health, telehealth, access, equity, code of ethics
The Online Journal of Issues in Nursing (OJIN), Volume 6, Number 3, contains a series of articles that discuss selected opportunities and issues associated with telehealth and the future of nursing. In her insightful forward, Linda Thede (2001) observed, "...given the present and future advances in technology, telehealth is here to stay. The question then becomes, how will it be used and who will benefit?" (Paragraph 9). Collectively, the articles in the "Telehealth: Promise or Peril?" issue identify many of the complexities of the "new world" we are entering as a result of technology. Indeed, e-Health (use of interactive communication and information technologies to engage in health-related activities) includes not only telehealth-related media and telecommunications but also a wide array of consumer and healthcare provider activities that use the Internet.
Among the conclusions that can be drawn from the various articles in the telehealth edition of OJIN is that technology is expected to change the practice of health professionals and the provision of health services, including how and when they are provided. E-Health is projected to have significant impact on healthcare consumers, changing their expectations and behavior as a result of having ready access to information not previously available. Additionally, e-Health will influence social and professional expectations about accessing and sharing individual, organizational and scientific health information and performance data. The National Academy of Science Committee on the Networking of Health discusses these and calls for new and thoughtful discussion about personal responsibility, choice and access to health services, as well as privacy and security of personally identifiable data (Shortliffe et al., 2000).
As we observe the proliferation of technology and consider the promises it brings to improving human health, new and compelling ethical questions arise from e-Health services and the consequences of living in an electronically wired world. The purpose of this article is to explore selected e-Health trends and emerging ethical concerns.
The Internet and Health Information
In "Futurescan 2002: A Forecast of Healthcare Trends," Internet-empowered consumers are identified as a significant future opportunity for health systems and providers to consider (Coile, 2002). Futurescan 2002 identifies the Internet as an important health service distribution channel for "new customers" and predicts that consumers will actively use the Internet to identify options and make key decisions in the near future. Among the market research findings that form the basis for this report, 57% of respondents predicted that consumer access to Internet based health information will influence future choices consumers make about everything from self-care to selection of healthcare provider.
The Internet is now considered an important vehicle that provides access to an unprecedented amount of healthcare information as immediately as it becomes known. Consumers are now accessing the same information about scientific discoveries and new treatment options as are health professionals. Self-informed consumers are changing the dynamics of the patient-healthcare provider relationship, as well as expectations about the health system and when, where and how health services are accessed (Eng & Gustufson, 1999; Eng et al., 1998).
In the future, the Internet is expected to influence a number of e-Health activities, including how consumers and healthcare providers:
- Purchase health-related products and services over the internet;
- Access health records via the Internet;
- Manage personal health information on the world wide web;
- Communicate between consumers/patients and providers, benefits managers, insurers and so forth via e-mail and other Internet means (e.g., chat rooms); and
- Participate in consumer-initiated communities of support that foster information exchange and through which new "virtual" relationships are formed.
Health Related Web Sites
Internet sites that provide information about diseases; diagnosis and treatment; disease prevention; health promotion; and individual health risk assessment and profiling services are proliferating. Visitors to Internet sites are providing those sites with a wide array of detailed personal information about themselves, and this information is being stored in databases and data warehouses waiting to be "mined" for customer relationship management (CRM) purposes. CRM is used to profile consumers to identify those most likely to need a health product, service or provider (Weber, 2000).
As e-Health technologies and applications become more capable and potentially widespread, we must be mindful that the possibilities of increased access to healthcare services and information also bring new concerns. Among these are concerns about how we determine the quality of technology mediated care and how to manage/ensure individual privacy, access to health services, self-determination and choice. As e-Health proliferation continues, the need to determine the safety and efficacy, clinical utility, and cost-effectiveness of new e-Health in relation to traditional services grows.
Consumer Access and Choice
In part, the future and speed with which e-Health services expand will depend upon who pays and how widely adopted these services become (Puskin, 2001). As adoption of new technology continues, we must be mindful that we have the potential to create a technocentric system of care that may inadvertently provide services through a "next best" mechanism when other choices are not present, or worse, that we may explicitly exclude entire populations. Thus concerns about the possibility of creating a second-tier system of care, as well as concerns about consumer access, equity, and choice may be uniquely problematic given emerging e-Health applications.
E-Health and Personal Choice
How ironic that the need to increase access to health services to underserved populations occurs as these populations are adversely affected by maldistribution of financial resources and health professionals. In developing e-Health services to increase access to health care for these populations, we are providing services through controversial or unproven mechanisms and/or when there is no alternative. Troublesome is the potential for development and use of new technologically defined systems of care that are dominantly used by those who have no choice. While we rush to embrace technology that redefines the dynamics of the provider-patient "relationship," keep in mind that the rationale for clinical efficacy and benefits such as increased access to services and cost savings associated with e-Health services are unproven.
As Pushkin (2001) observes, the future of adoption and expansion of telehealth likely rests with future payment practices among private insurers and healthcare providers. However, what is the motivation/reason for e-Health services to be funded by private payers? Put another way, are systems of care that are dependent upon public funding and reimbursement equivalent to systems of care that are dependent upon private funding? If not, the explicit rationale for the need and appropriateness of such services is warranted, for instance, the establishment of telehealth services to rural or otherwise underserved areas.
Ethics of e-Health Proliferation
Is our reasoning and subsequent decision making explicit when we define policy that endorses or compensates e-Health services? What are the ethical principles that guide decision making to acquire unproven technologies and endorse e-Health services? Is doing the greatest public good the rationale for endorsing yet unproven technology-mediated services? Are principles of utilitarianism or communitarianism used for decision making? In the absence of data to inform the cost effectiveness and potential efficiency of such applications, what expectations and goals are we pursuing?
As health information and health services become available through the Internet, many new questions emerge. For instance, will e-Health services be included as part of a defined set of basic services that all Americans should have access to? What services will be covered and how will we ensure access and equitable distribution among economically disadvantaged populations? In the future, when we provide access to face-to-face health services, should we also provide access to e-Health information and services?
An increasing number, but not all, of American homes have access to the Internet. Some choose not to acquire or use the Internet; others do not have the financial means and/or knowledge to do so. In cases where Internet access is not available in the home, individuals would need to rely on other locations for access. If these access points are in public locations (e.g., schools or libraries), what guidance or special considerations should be taken given the confidential nature of information exchange? Since this issue is part of a larger social debate, should professional nurses be concerned or be compelled to contribute to the dialogue?
Given concerns about access and equity concerning e-Health, a number of concerns emerge. One concern is about access and equity related to electronic health information and services on the Internet. If access to such services is only available in work and public settings, will privacy and confidentiality concerns be disregarded? Will access be available when the individual is present and when the system is available for use? More importantly, because of the potentially sensitive nature of health information on the Internet, access to such information at home is critical. What public concerns exist related to uneven availability of Internet access? Should access to electronic health information be considered central to accessing the full array of health services in the future?
Should we call for support of universal access to health and medical information to foster a democratization of information and improve public health? Thomas Eng and colleagues (1998) advocate such a position. They identify the Internet as an important vehicle to access health information, to increase knowledge, to improve emotional state, and (possibly) to reduce health care costs. Thus, the provision of low-cost or loaned computers to the needy, with discounted access to online sources, may increase health knowledge and reduce health inequalities (Eng & Gustufson, 1999).
The Perils of E-Health
No matter what, some individuals will never use the Internet or other technologies for a variety of reasons. They may not have the technical knowledge and skills or desire to use computers or other electronic technologies. However, how do we ensure that no one is denied knowledge about health improvements that are most widely available through electronic means? How do we ensure that no one is left out of the system because of a reluctance to use electronic technologies? And how do we assure access when some users of technology are barely literate?
The second area of concern is associated with personal health information that is collected electronically. Personal information is collected when asked for directly (name and other identifying information) and also is collected without acknowledgment using embedded computer tracks such as cookies and other mechanisms such as on-line surveys and assessments that provide detailed information to the web site about users who are not informed about how this information will be used. As Internet firms employ nurses and other heath professionals, do healthcare professionals have an ethical duty to advocate for individual privacy? As contact with patients and consumers is less obvious, does a nurse have a duty to advocate for individual privacy? What decision approaches should be used?
Code of Ethics for E-Health
Organizations that use a permission-based approach to the release of information recognize the individual as the agent to permit or deny access to personal health information. In such cases, the individual is notified of the request to access personal health information and authorizes the information to be shared/released. Another approach is a paternalistic one. In this case, health professionals or information system managers decide what constitutes "reasonable access" and agree to act in the best interests of patients when requests to access to health information are made. A third approach (frequently used in the medical record systems) is an umbrella release to access to personal health information on a "need to know basis." A fourth approach relies on the development of common, consensual rules to protect confidentiality and facilitate necessary information sharing.
To ensure online quality and privacy protection, what guidelines might a nurse consult to address these questions? What policies are needed and how should nurses advocate for them? Because the Internet is changing how people receive health information and healthcare, everyone who uses the Internet for health-related purposes must work together to create an environment of trusted relationships. Such relationships will assure quality information and services, protect privacy, and enhance the value of the Internet for both consumers and providers of health information products and services.
A number of groups (public and private) are developing quality criteria and on-line codes of conduct to help consumers understand the issue of quality and how their personal information is used by web sites. In May 2000, the Internet Healthcare Coalition’s e-Health Initiative announced the release of an international e-Health Code of Ethics. The goal of the e-Health Code of Ethics is to ensure that individuals can confidently and with full understanding of known risks realize the potential of the Internet in managing their own health and the health of those in their care. The e-Health Code of Ethics sets forth eight principles: candor, honesty, quality, informed consent, privacy, professionalism in online healthcare, responsible partnering, and accountability (Rippen & Risk, 2000 ). A summary of these principles follows:
- Candor: Disclose information that would likely affect consumers understanding or use of the site or purchase or use of a product or service. What is disclosed should include who owns or has a major financial interest in the site, what the site's purpose is, and any relationships such as advertising partners.
- Honesty : Ascertain that information, including content and claims about health products, is truthful and not misleading. Distinguish content intended to promote or sell a product or service from educational and scientific content.
- Quality: Make good-faith efforts to evaluate information to ensure that information is consistent with the best available evidence. Specific recommendations include allowing only qualified professionals to provide personalized medical advice or care; indicate clearly whether advice is based on scientific studies, expert consensus or professional or personal experience or opinion; acknowledge that some issues are controversial (present all views); present information in easy-to-understand, user-friendly formats; and indicate what sources were used in providing information.
- Informed consent: Clearly disclose potential user privacy risks and keep from using personal data without the user's permission (individual consent), clearly indicate what data are being collected when users visit the site, who is collecting the data, how the site will use the data, and whether the site will share data (with whom and for what purpose).
- Privacy: Users have the right to expect that their personal data will be kept confidential, so e-Health sites must take reasonable steps to prevent unauthorized access to or use of personal data.
- Professionalism in online health care: Physicians, nurses and other health care professionals who provide specific, personal medical care or advice online should abide by the ethical codes that govern their professions. In all cases this calls for professions to do no harm, protect confidentiality, put consumers’ interests first, clearly disclose sponsorships or financial incentives, clearly disclose any fees involved, and obey laws and regulations of all relevant jurisdictions. Professionals should specify their professional credentials, disclose where they practice and give clear instructions for follow-up care when appropriate. They also should clearly explain the constraints of online diagnosis and treatment recommendations (including explanation of when online consultation can and cannot or should not take the place of face-to-face interaction with a professional).
- Responsible partnering: Web sites must take reasonable efforts to make sure that sponsors or partners abide by applicable laws and uphold the same ethical standards as the sites themselves. They should insist that sponsors not only influence the way research results are displayed but also clearly indicate whether links to other sites constitute an endorsement of those sites.
- Accountability: Clearly indicate how users can contact the site owner or manager, provide easy-to-use tools for site visitors to give feedback, review complaints from users promptly, and encourage users to notify the site's manager if they believe partners or affiliates have violated any laws or ethical principles.
In conclusion, the brave new world of e-Health brings with it many new opportunities and risks to create an environment of trusted relationships and assure high quality information and services; protect privacy; and enhance the value of the Internet for consumers and providers of health information, products and services. Nurses must thoughtfully consider these possibilities and the ramifications that e-Health has on access to information, personal choice, privacy and confidentiality and, most importantly, on business and professional ethics. Nurses should understand the implications of e-Health and the business ethics of e-Health within the context of their countries’ codes of ethics.
Peggy Jo Maddox RN, MSN, EdD
Article published November 21, 2002