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Special Section: The Newest Frontier: Ethical Landscapes in Electronic Healthcare

Ethical Challenges of Telemedicine and Telehealth

BONNIE KAPLAN and SERGIO LITEWKA

As healthcare institutions expand and vertically integrate, healthcare delivery is less constrained by geography, nationality, or even by institutional boundaries. As part of this trend, some aspects of the healthcare process are shifted from medical centers back into the home and communities. Telehealth applications intended for health promotion, social services, and other activities—for the healthy as well as for the ill—provide services outside clinical settings in homes, schools, libraries, and other governmental and community sites. Such develop- ments include health information web sites, on-line support groups, automated telephone counseling, interactive health promotion programs, and electronic mail exchanges. Concomitant with these developments is the growth of consumer health informatics, in which individuals seeking medical care or information are able to find various health information resources that take advantage of new information technologies.

These shifts are motivated by a sense that it is better for people to be able to stay in familiar and friendly environments and have more control over their lives and health. However, as the population ages, it seems that the demands for home care will outpace the economic and human resources to meet those demands. The rapid growth of these applications is, therefore, also fueled by the growth in the information technology industry and encouraged through governmental initia- tives under the assumption that telecare home services might be less expensive than institution-based alternatives.

Often a distinction is made between telehealth and telemedicine. Telemedicine has a clinician as at least one of the participants, whereas telehealth is any use of information technology for health purposes.1 Both involve using electronic information and communication technologies for healthcare when distance separates the participants. They span a spectrum of applications, from the relatively simple—like linking telephone, video, facsimile, home computers, and other low-cost technologies to various devices so that health-related information can be sent to clinicians from individuals’ homes—to clinical consultations conducted at sites remote from each other and, therefore, convenient to both clinicians and patients, to complicated procedures, such as telesurgery, performed remotely. Rather than the cumbersome phrase ‘‘telehealth and telemedicine,’’ sometimes we will use one of these terms to stand for both of them. We also may

Bonnie Kaplan gratefully thanks the participants in discussions following her presentations of some of this material at the Kay-Claremont Graduate University Symposium on Pacific Edge E-Health Innovations, December 2006; University of Miami and VA Health care System Dialogues in Research Ethics, January 2007; and at the Conference on Education and Health Professionals in the New Millenium: Technological Advances, Multicultural Competence, Documented Outcomes and Evi- dence-Based Practice, in Celebration of the Tenth Anniversary of the College of Education and Health Professions, Sacred Heart University, March 2007.

Cambridge Quarterly of Healthcare Ethics (2008), 17, 401–416. Printed in the USA. Copyright � 2008 Cambridge University Press 0963-1801/08 $20.00 doi:10.1017/S0963180108080535 401

use the broader term ‘‘e-health,’’ more common in the United Kingdom, which refers to ‘‘the emerging field in the intersection of medical informatics, public health and business, referring to health services and information delivered or enhanced through the Internet and related technologies,’’2 though we mean this to include mainly consultation, communication, and intervention.3

Potential benefits of telehealth and telemedicine include greater availability of services and access to healthcare providers (including specialty services that may not be located near to those needing them), reduced disparities in healthcare accessibility, less travel time for both patient and clinician, lower costs, and quality improvements presumed to derive from access to more timely and accurate data and improved information flow available any time or any place.4

These improvements also could lead to changes in infrastructure that would provide seamless and continuous care available on a more equitable basis by allowing interorganizational cooperation and ready flow of information between wherever patients and providers may be.5

These new developments seem to provide what people want: personalized relationships with providers, information targeted to their concerns and needs, and interactive tools for health and disease management.6 It is thought that patients and others needing healthcare services will benefit from use of these technologies in several ways commonly considered ‘‘empowering.’’ First, they would be able to stay in their own homes rather than be institutionalized, with fewer intrusions by healthcare workers and more control over their privacy, health management, schedule, and activities. Individuals may even obtain care from providers from whom they are physically distant and whom they may not have met in person. Moreover, knowing that patients’ conditions are being monitored could offer some reassurance for both patients and their loved ones. Further, the power differential between patients and clinicians would be reduced through patients’ access to health-related information and by providing a means for the like- minded to connect, possibly set up their own healthcare organizations, and thereby leading to increased democratization.7 It is thought likely that the care paradigm would shift from crisis intervention to promoting wellness, prevention, and self-management.8

Using these new technologies, then, has the potential for great good. Although neither their clinical nor cost effectiveness has been well established,9 it, therefore, is likely that governments and healthcare institutions will provide more and more healthcare services using these new tele-technologies. We, too, are enthusiastic. Mixed with our enthusiasm is our recognition that these advantages come combined with ethical tensions. E-health is not only a techno- logical improvement, but a reengineering of healthcare processes requiring consideration of sociotechnical aspects of their design and development. It is meant to broaden the scope of healthcare delivery, place citizens at the center of services, and provide them increased interaction with health professionals who look after their health needs.10 This, it is believed, could lead to improving healthcare not only locally, but also worldwide, through global thinking and information technology.11 The Internet is seen to ‘‘ha[ve] the greatest potential to promote health and prevent disease for individuals and communities throughout the world’’ and ‘‘seems uniquely suited for health education and promotion because it can be used as a tool within our existing models and frameworks without sacrificing our principals[sic] and values.’’12

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But what principles and values are those? Some question whether this new model of medical attention is clinically effective and provides positive outcomes for the users. Both the effectiveness and ethics of such services still are under discussion.13 It is now eight years since Iverson warned that little time was left to avoid adoption before thinking through moral implications.14 Bauer, too, pointed out that home-based telemedicine is being driven by economic and technologi- cal criteria, with little attention to its ethical appropriateness or justification.15

They, and others, called for frameworks and guidelines so that comparisons with standards of home care and other alternatives, as well as reasoned dis- cussion, occur before the technology becomes too entrenched to be able to effect changes.

This paper explores some of the hopes, concerns, and ethical tensions surrounding these new technologies, particularly in industrialized countries. Although privacy, security, confidentiality, and information accuracy are com- mon ethical concerns, we think additional issues also need addressing. We begin by discussing design issues. This leads us into considering evaluation issues in telehealth and clinical research. We then focus on the individuals using the technologies, looking at informed consent, autonomy, and empowerment. Next we shift to relationships among various individuals involved, such as patients, providers, caregivers, and people within a patient’s family. We then move on to societal and policy issues.

Our discussion is by no means exhaustive. We hope, instead, to both broaden and deepen understanding of how to use these and other technologies that have so much to offer for improving both health and overall well-being. To this end, we conclude by pointing out the need for evaluation of these technologies that addresses their ethical and social aspects, thereby adding to the thoughtful considerations and colleagues’ calls for finding ways to use the new technologies to benefit patients and practitioners while avoiding potential pitfalls.

Ethical Issues Concerning Design

Telehealth, as Layman interestingly notes, has raised problems stemming from conflicts between various aspects of technology usage and such ethical principles as abridgement of privacy (including combining and mining data), inaccurate and obsolete data, and security breaches.16 Other frequently discussed issues pertaining to design include information overload; usability and user-friendliness; data standards and integration for linking patient and personal information to achieve interoperability for individual records, personal health management, and public health; and how new applications fit with changes in healthcare delivery and health information infrastructure. The quality and accuracy of online information also is of deep concern, which various honor codes and vetting mechanisms have evolved to help ensure.17

Rarely does the literature address additional design issues that also seem important to us. Among them is whether individuals would use the technology and whether or not it is ‘‘usable’’ or ‘‘obtrusive.’’ Going beyond dimensions of usability and obtrusiveness identified in Hensel et al.’s excellent review18 are how what constitutes usability or obtrusiveness, as well as other concerns, may differ for different use sites (e.g., home, community center) or different populations of

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people intended to use the technology (e.g., people with the same diagnosis or of the same socioeconomic status or with a particular disability). In addition, how much are actual users involved in user-centered and use-friendly design ap- proaches to telehealth applications?18a

Also important are problems deriving from disciplines involved in creating, deploying, and using the new technologies. Bioengineers, computer experts, software technicians, web programmers, insurance providers, physicians, and nurses are some of the participating actors. Each group has its own economic, professional, and social orientations and differences in knowledge and know- how concerning telecare and, hence, its own interests in e-health developments. Moreover, e-health is promoted as ‘‘not only a technical development, but also a state-of-mind [sic], a way of thinking, an attitude, and a commitment for networked, global thinking, to improve health care locally, regionally, and worldwide by using information and communication technology.’’19

Design and deployment decisions are necessarily influenced by these kinds of values and intentions for how and why the technologies should be used. In the process, patients might not be the ones to decide whether conventional medicine or telehealth fits their needs better or just how their concerns are incorporated into the technologies they are expected to use. And to make things even more complicated, sometimes, those needs may be hard for them to identify if they become confused by disguised marketing initiatives, as when web sites mix information and advertising to sell medical services. Consequently, ethical problems may arise related to the intentions of those who develop these systems, the goals that they seek, and the final outcome of those new procedures.20 That designs may benefit clinicians more than the ill or elderly or, in fact, produce effects opposite to what had been expected has led to laudable attempts to articulate more ethical design principles.21 Among the issues we think important are the following: How provider- or patient-centric is the technology? Does the shift to remote services promote rationality and efficiency at the expense of values traditionally at the heart of caregiving? How does the design affect home life and family dynamics? To what extent should technology usage involve attempts to manipulate users into different behaviors? How might the replace- ment of human contact by new technologies be ameliorated? To what extent is the deployment of technology an end in itself, aimed not toward the improve- ment of health or well-being, but to create market needs? How do we identify the boundaries between genuine solutions and futility in light of technologies that may shift them? How can those who design technology become more cognizant of and sensitive to ‘‘the human condition and all its complexity,’’ a mark of the move toward ‘‘holistic engineering’’?22

Lastly, different individuals attribute different meanings to the same technol- ogy. For example, some users considered a telephone-based diet and exercise telephone counseling system as a way for the provider organization to reduce costs and contact with practitioners, whereas others viewed it as a friendly and empowering alternative to depending upon a human counselor.23 Further, what is acceptable in a particular country or region may not be acceptable in another, so the same design or technological approach may lead to different results in different user communities or different cultures. These differences need to be considered during design and implementation so that the technology is received and used as beneficially intended.

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Telehealth, Clinical Research, and Evaluation

Telemedicine and telehealth evaluations, like evaluations of other healthcare interventions, are affected not only by the changing context of healthcare, but also by what evaluation questions are being addressed. These questions rarely include ones pertaining to values or to how the technology is deployed and used in situ, nor other ethical issues such as those we raise in this paper.

Most evaluations of medical and health informatics applications are based on positivist, rationalist, or rational choice theoretical perspectives and study designs, whereas technology assessment, similarly dominated by quantitative experimental designs (based on randomized controlled trials) and cost/benefit analysis, also has developed over the past 30 years to emphasize safety, efficacy, and economic impacts. The dominant evaluation focus, then, including evalua- tions of telemedicine, has been medical and technical, especially examining feasibility, safety, technologic and economic efficiency, and clinical outcomes, with frequent study of physician behavior or reactions rather than those of other actors. Thus, evaluations mirror the values of scientific rationality and efficiency often motivating the systems being evaluated. Studies generally have not in- cluded social or ethical concerns and may not be useful for policy making.24

Telemedicine evaluations are scarce or of problematic design.25 Yet, evaluations in related areas suggest that well-established communication and status patterns shift and that information concerning a patient is decontextualized. Both these changes may lead to poorer quality care. For example, in a breakthrough providing accessibility to remote communities or solutions to overcrowded or understaffed hospitals, a radiologist distant from a patient imaging site reads an image. However, if this radiologist is overwhelmed by a flood of images from a network of institutions, misdiagnosis may occur. Besides, clinicians lack information when they interpret images in the absence of direct knowledge of the patient. The remote radiologist is not able to benefit from in-person radiology conferences with the treating physician, and the treating physician may not be able to assess the radiology report in light of direct knowledge of the radiologist. This disconnect, too, may lead to misdiagnosis.26 Another example is the need for clinicians to review data from in-home devices that monitor physiological signs. Clinicians are both legally and morally obligated to consider all the data they receive, including the new stream of data from these devices. Physicians or nurses responsible for reviewing this influx must handle voluminous data, far more than they used to consider when caring for patients at home. The overwhelming amount of decontextualized data, changes in their work routines, and redistribution of clinical tasks all may contribute to errors. Even with baseline measures, it may not be obvious in the mass of frequent readings what to consider a normal fluctuation and what to consider alarming. Determining the boundaries between what is significant and what is not adds more burden. Further, trust in electronic information may interfere with recognizing that these wonderful tools and state-of-the-art data transmission might also increase the likelihood of hurting patients. It is especially questionable morally if a telehealth service substitutes for a traditional human medical service because it is a cheaper alternative reserved for those socially disadvantaged.

Also, it is not always clear just whose responsibility it is to detect and respond to potential problems. Already there is some evidence that telemedicine changes

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work routines and redistributes responsibilities by shifting clinical tasks to nonmedical personnel or to the technologies involved.27

As these examples suggest, efficacy, economy, and technical correctness, then, need to be considered in light of other values and findings from studies that address broader evaluation questions. Ethical and social considerations lead some researchers to advocate moving beyond the traditional focus on clinical effectiveness and patient outcomes to include ethical components and the kinds of study designs to address them.28 As a mirror of the change in medicine and nursing toward understanding illness in social as well as medical and technical terms, there have been calls for evaluating treatment and clinical practice beyond what is possible through randomized controlled clinical trials and economic criteria so as to include, for example, patients’ interests and experiences.29

Telehealth applications also may be evaluated not only as therapies, but also as information technologies embedded in organizational or institutional contexts and as information services embedded in personal, societal, or community contexts.30 We, too, consider it an ethical imperative to conduct evaluations and to develop and use d