Increases in life expectancy and growth of the population older than age 65 have led to the need to develop new models for health care and supportive services that promote independence, choice, and empowerment of older adults. By 2030, citizens older than 65 are projected to represent 20% of the U.S. population (U.S. Department of Commerce, Economics and Statistics Administration, 2003). Advances in information technology have introduced numerous ways to enhance or expand health care and support services for older adults, generating the need for research to establish utility and outcomes. Examples of technology applications in aging research include home-based monitoring applications, sensor-based systems that detect emergencies or prevent adverse events, and telehealth solutions that bridge geographical distance and increase access to services for older adults.
This article explores ethical considerations associated with the use of technology in gerontological research and practice, as well as presents a framework for understanding the ethical dimension. Specifically, we focus on the case of telehealth and exemplify the framework using examples from an actual telehealth project, The Native People for Cancer Control Telehealth Network (NPCCTN).
Telehealth is defined as the use of videoconferencing and/or other telecommunication technologies to enable communication between patients and health care providers separated by geographical distance. It has the potential to increase access to health care and supportive services for older adults in rural and underserved areas. For example, Duke (2005) explored the use of telehealth for community-based geriatric case management for frail older adults residing in private homes where videoconferencing enabled them to interact with remote health care providers and receive specialized care. Wong, Hui, and Woo (2005) examined the use of telehealth to deliver an exercise program for older adults with knee pain in community centers, linking them with geriatric experts. These applications highlight the potential that technology holds for elder care applications in research and practice, as well as design challenges.
Older adults often face the challenge of disease management due to one or more chronic conditions. Technological solutions enable them to become actively involved in the disease management process and access information related to their condition. Advancements in portable monitoring technologies and the diffusion of the Internet in the 1990s led to the design of numerous home-based applications for older adults. Examples include the use of trans-telephonic exercise monitoring as an alternative for cardiac rehabilitation patients (Sparks, Shaw, Eddy, Hanigosky, & Vantrese, 1993), the implementation of home-based video monitoring for home care patients (Johnston, Wheeler, Deuser, & Sousa, 2000), and the TeleHomeCare Project, which used the Internet and monitoring devices with patients with congestive heart failure, chronic obstructive pulmonary disease, or requiring wound care (Demiris, Speedie, & Finkelstein, 2001). All of these interventions required older adults or family caregivers to operate devices and/or use the Internet. This approach can, in some cases, challenge older adults and their caregivers who may have little computer experience or impaired vision and hearing that affect their use of the technological application.
Recently, home-based technological solutions have been designed to support older adults in their pursuit of independence as they try to cope with health-related issues such as falls, sensory impairment, immobility, isolation, and medication adherence, without requiring them to actually operate devices (Demiris et al., 2004). Such systems rely on the installation of passive monitoring features (e.g., motion sensors) within the residential infrastructure or the use of wearable sensors (e.g., actigraphy watches). The term smart home has been introduced to describe a residence equipped with technology that facilitates monitoring of residents and/or promotes independence and improves residents’ quality of life (Demiris & Hensel, 2008). For example, the Aware Home project explores ubiquitous computing technologies that sense and identify potential crises, aid an older adult’s memory, and track behavioral trends (Kidd et al., 1999). Similarly, the University of Rochester’s Center for Future Health developed a Smart Medical Home as a highly controlled environment that includes infrared sensors, biosensors, and video cameras (Marsh, 2002). The ENABLE project uses numerous features, such as a locator for lost objects, a temperature monitor, and an automatic bedroom light for patients with dementia (Cash, 2003). These examples demonstrate the diversity of technological applications for aging as it pertains to scope and intended use. However, at the same time, these new models of care call for ethical considerations, especially privacy.
In the context of technology and aging, systems designed to address specific needs of older adults are preferable to purely technologically driven systems or devices. As is the case with any tool introduced to support or redesign health care services, how the technology affects both clinical and cost outcomes and the actual process of care and end users’ quality of life must be considered. In addition, it is important to consider the complex ethical, legal, and policy implications resulting from the use of technology.
The framework for ethical dimensions of the use of technology with older adults presented in this article is derived from previous work on ethical considerations in use of technology in home care (Demiris, Oliver, & Courtney, 2006), the work by Kaplan and Litewka (2008) on ethical challenges of telemedicine, the work by Spielman (1988) on developing a geriatric ethic, and practical experiences and lessons learned from the NPCCTN.
Framework for Ethical Considerations
Several ethical considerations are critical to technology use and are especially important when older adults are the recipients of services. The key factors are privacy and confidentiality, informed consent, equal access, usability, and the impact of technology on the patient-provider relationship. Specific examples from our experience with the NPCCTN highlight these factors. The factors and examples are integrated into a roadmap that constitutes a framework for practitioners who aim to provide efficient and humane services to older adults, for administrators who must make judgments about the use of technology, for investigators who use technology in their intervention research, for system designers who have to make decisions about system features and interfaces, and for policy makers who have to address issues of reimbursement and standards of practice.
Privacy and Confidentiality
As technology advances, the health care sector is facing many challenges related to the privacy and confidentiality of individual health information. Information privacy refers to a patient’s right to control the use and dissemination of information that relates to him or her. Confidentiality is a tool for protecting patients’ privacy. In 1998, the notice of the proposed rule from the U.S. Department of Health and Human Services concerning security and electronic signature standards was introduced as part of the Health Insurance Portability and Accountability Act (HIPAA), which had passed in 1996. The proposed rule became law in 2000.
The rule defines standards for the security of individual health information and electronic signature use for health care providers, systems, and agencies. These standards refer to the security of all electronic health information. Thus, they have a great impact on the design and operation of technology-based applications for older adults. HIPAA calls for several provisions related to the use, maintenance, and disclosure of electronic patient health information. In addition, state laws provide further restrictions on the use of patient health information. Telehealth providers and researchers must implement appropriate safeguards to protect patient health information exchanged in a telehealth setting, including business associate agreements where appropriate, computer security measures, and detailed policies controlling the use and disclosure of patient health information.
For telehealth applications, privacy issues related to the video or audio recording, maintenance of recordings, and storage and transmission of images and other patient record data must be fully addressed. The transmission of information via communication lines such as telephone lines, satellite, or other channels may generate concern related to possible privacy violations. An additional concern in some telehealth situations is the presence of technical staff assisting with the transmission procedure at the clinical site (or even at both ends), which could be perceived as a loss of privacy by patients. Patients are often unfamiliar with the technical infrastructure and operation of the equipment, which can lead to misperceptions of the possibilities of privacy violation during a videoconferencing session.
NPCCTN Example. An example of concerns with privacy arose with the NPCCTN survivor support groups. Many of the tribes served by the telehealth network have a small number of enrolled members, which means few cancer survivors live at each tribal site. In addition, the tribes are separated by great geographical distance. The majority of cancer survivors are tribal elders. These elders are generally not interested in traveling or unable to travel great distances to meet with other cancer survivors; they are, however, interested in talking with cancer survivors in other tribes to share experiences. Thus, a telesupport group was established using video equipment to link the various support groups at each tribe.
Elders in the participating tribes who are cancer survivors gather once per month at a local site (e.g., community center, clinical conference room) to participate in discussions led by a remote speaker and moderated by a local facilitator. Speakers are domain experts in urban medical centers, who cover an array of topics on cancer treatment, self-care, coping, and American Indian and Alaska Native complementary and alternative therapies. Participants have the opportunity to ask questions specific to each of the covered topics. Attendance in these groups varies, with the number of participating sites ranging from 7 to 10, and the number of participating cancer survivors per site ranging from 2 to 22. Flyers are posted in clinics, community centers, and other local sites, as well as distributed at community elder dinner events to announce the date and topic of upcoming support groups.
Initially, there were many questions about the system’s capacity for privacy and confidentiality. Some asked if the support group sessions were being recorded by the technician and broadcast on a television network, indicating misapprehensions of elders not familiar with the technology and its uses. Specifically, the concern was that the confidentiality of the session attendees may be violated if sessions were broadcasted to third parties.
In response to these concerns, we worked with the support group facilitators to reassure attendees that privacy and confidentiality would be maintained by following standard encryption and security protocols and procedures and not recording any support group sessions. We also informed the support group members that what they could see on the television screen was the image that was transmitted. This allowed elders who did not want their image projected the choice to sit where they could not be seen on the monitor, thus ensuring their images would not be transmitted.
Once their comfort with the technology increased and their worries about privacy and confidentiality issues were assuaged, the elders found they were able see and share stories with relatives who had long ago moved to another reservation and whom they had not seen for years. The alleviation of privacy concerns resulting from familiarity with the technology was further evidenced by the fact that elder support group attendees in Alaska had a greater comfort level with the technology at the start because of their familiarity with videoconferencing technology through frequent use of the Alaska Federal Healthcare Access Network (AFHCAN) telehealth cart in rural Alaskan clinics (Hudson, 2005). This cart includes a computer, monitor, keyboard, mouse, scanner, and digital camera, which are used to transmit clinical images to urban medical centers for diagnosis and treatment recommendations. We believe the Alaska elders’ frequent exposure to the AFHCAN system may have alleviated privacy concerns associated with the use of videoconferencing during the support group sessions (unlike elders in rural Washington who were participating in videoconferencing sessions for the first time and had more questions about privacy).
Informed consent is a complex concept. A basic understanding of informed consent focuses on an individual’s autonomous authorization of a clinical intervention or participation in research. As Meisel and Roth (1980) argued, components of informed consent include the principles of competence, disclosure, understanding, voluntary participation, and ongoing consent. In the case of telehealth for older adults, disclosure may be hindered given that risks associated with specific software or hardware are not always known or fully explored. In addition, end users’ possible lack of technical expertise can further hamper this process. In many cases, it is challenging to assess whether older adults have been informed adequately in the context of technology application.
In the context of technology and aging, informed consent needs to be viewed as a process and not an event because the decision involves a new mode of care delivery. The definition of informed consent as a process can be especially useful in cases where technology is applied for ongoing monitoring or communication with health care providers. In these cases, episodes of care are carried out over an extended period of time. This time frame gives older adults an opportunity to reflect on treatment options in light of their values and become familiar with the process and system requirements and potentially revise their attitudes or potential concerns.
The ongoing process of consent for telehealth applications requires a definition of all parties from whom consent must be sought. Family members or other informal caregivers who live with the patient in the same residence or who escort older adults to settings where the technology is installed must also approve the technology installation and/or their own exposure to the technology. Identifying all involved stakeholders is therefore essential to ensure all parties are informed and consent to processes that directly or indirectly affect them. Researchers in telehealth for older adults have to develop informed consent procedures and documents that explain in lay language the specific aspects of the technology used, while addressing the potential risks and benefits resulting from use of a telehealth system.
Successful use of technology with older adults requires that they provide informed consent of its use. The way in which these end users understand the concepts of the technology to be used influences its level of acceptability and, consequently, its rate of diffusion. Patients’ and family members’ informed consent of and satisfaction with a technology application become essential in light of possible functional limitations and inexperience with the technology.
Few reliable and valid instruments measure older adults’ perceptions of or satisfaction with specific technology applications in health care. The Telemedicine Perception Questionnaire (TMPQ) (Demiris, Speedie, & Finkelstein, 2000) was developed to assess older adults’ perceptions of the advantages and disadvantages of telehealth in the home setting. This instrument was tested extensively and showed high level of internal consistency (Cronbach’s alpha coefficient = 0.83) and very high test-retest reliability (0.98). The TMPQ covers domains such as perceived effect on quality of and access to health care, time and money (including time saving for the patient and nurse), ease of equipment use, protection of privacy and confidentiality, lack of physical contact, reduced sense of intimacy, and general impression of the concept of telehealth and its role in the future (Demiris et al., 2000).
Understanding older adults’ attitudes and perceptions of technology and capturing their perceived benefits and concerns informs evaluation of technology-based applications, design of future systems, and development of improved informed consent procedures. Pilot studies can also identify participants’ attitudes and concerns and help researchers refine their systems and/or study protocol. Furthermore, pilot studies can inform the informed consent procedures pertaining to technological issues for the large study.
NPCCTN Example. The NPCCTN services include a provider education series, a twice-per-month offering to tribal health care providers who are caring for elderly cancer patients. Tribal providers would need to travel great distances to urban centers for continuing education if these sessions were not provided via the telehealth network. Because some providers are not able to attend, the sessions have been videotaped to put on a Web site to view; as part of our protocol, we remind all NPCCTN providers about this. Providers can opt out of the videotaping by sending an e-mail to the Telehealth Network Director. Patient consultations and support group sessions are not videotaped. However, the same principle of voluntary participation applies to all video-based interactions of the network.
Telehealth systems hold the promise to increase access to care for underserved older adults in both rural and urban areas. We still need to assess whether these telehealth services provide the means for more frequent monitoring or delivery of services or if they could become a cost-saving method that deprives patients of face-to-face consultations. Specifically, there is a need to investigate how technology addresses decreased use of services, particularly at the entry to care, and the associated structural, financial, or personal barriers.
Rural older adults face many barriers that limit access to quality health care. Rural health care institutions have unique challenges such as low population densities, few economies of scale, and high rates of fixed costs per service. Rural older adults have lower incomes, are more likely to be poor, and have less formal education, compared with older adults in urban areas (Coward, McLaughlin, & Duncan, 1994). In addition, rural older adults are more likely to be in poorer health than their urban counterparts (Coward et al., 1994).
In addition to access to care, telehealth highlights the challenge of access to technology. In this context, the digital divide becomes an important factor. This term is used to refer to the gap in computer and Internet access between population groups segmented by income, age, geographical location, or other parameters. For example, in 2004, only 37% of households with an annual income less than $30,000 were likely to have sent e-mail in a typical day, compared with 58% of households with an annual income greater than $75,000 (Fox, 2004). Similarly, 67% of urban-dwelling individuals use the Internet, compared with 52% of rural-dwelling individuals (Bell, Reddy, & Rainie, 2004). Finally, while 75% of individuals ages 30 to 49 use the Internet, only 22% of those 65 and older use it (Fox, 2004).
Although lower income groups are increasingly gaining Internet access and more older adults are using the Internet, the digital divide will most likely persist as new technologies become available. For example, as sophisticated multimedia services become an integral part of Internet-based applications, broadband access may become as important for accessing health care sites as narrowband access is today for obtaining Web-based health information. In that case, a digital divide can exist between two groups that both have personal computer hardware and Internet access, simply due to different access protocols or capabilities. Furthermore, access to infrastructure is only one dimension of the digital divide in health care; health literacy and appropriate Web content are key components. When planning new interventions that use technology, researchers have the ethical responsibility to consider the challenges of long-term sustainability and access and to ensure their research does not exacerbate existing disparities.
NPCCTN Example. Remote tribal clinics can access specialized providers through the NPCCTN. Once telehealth equipment was installed in all clinic sites, clinic providers obtained access to clinical consultations with specialized providers without needing to refer their patients hundreds or even thousands of miles away to receive specialized care. In recognition of the digital divide that affects the American Indian and Alaska Native population, the telehealth network provided high-speed Internet and required equipment to tribal clinics and community centers, allowing the elders to visit these nearby sites for teleconsultations or support group sessions. Training and technical support were provided to all users and customized to individuals’ needs, experience, and level of familiarity with the technology.
The NPCCTN developed an extensive business plan to ensure the long-term sustainability of its services to the tribal clinics. For example, the network increases the local clinics’ ability to manage higher acuity patients because they have access to specialized consultation. This allows the clinics to increase their revenue. As technology advances and health care services evolve, the NPCCTN views sustainability of the services it provides as an ethical imperative.
Older adults frequently have functional limitations due to their age, their diagnosis, or both. A functional limitation in relation to technological applications is described as a reduced sensory, cognitive, or motor capability associated with human aging, temporary injury, or permanent disability that prevents a person from communicating, working, playing, or simply functioning in an environment where other people in the population can function (Demiris, Finkelstein, & Speedie, 2001).
While the Internet and advanced telecommunication technologies have the potential to empower patients and even revolutionize the process of health care delivery, people older than age 50 are at a disadvantage because software and hardware designers often fail to consider them as a primary and unique user group (despite the fact that they are the fastest growing segment of the U.S. population). Usability and accessibility issues are important quality criteria for Web-based interventions, but they are frequently ignored by designers and evaluators (Bellazzi, Montani, Riva, & Stefanelli, 2001).
The design of a health information system becomes a challenge when it targets users who may be inexperienced with technology and/or have functional limitations. Systems that target older adults should aim to maximize the quality of the end user experience (Demiris, Finkelstein, & Speedie, 2001) and undergo rigorous usability tests. Several design considerations can be taken into account when developing systems for older adults or other populations with functional limitations. Such considerations refer to the choice of fonts, colors, and other interface components for Web-based applications (Demiris, Finkelstein, & Speedie, 2001), as well as training and patient education in the use of videophones (American Telemedicine Association, 1999). Software and hardware designers need to address older adults’ needs and expectations if they aim to implement systems that will be successful and accepted by that population. Usability is an essential feature of technology-based interventions and that becomes an ethical responsibility for researchers.
NPCCTN Example. In the NPCCTN, older adults are not asked to operate any technology while participating in the telesupport groups because of their potential inexperience and functional limitations. The support group facilitator and tribal clinicians are extensively trained in the use of the videoconferencing equipment to ensure that technology does not pose a burden and instead becomes transparent during the group meetings. Usability is less of a concern to the older adults in this setting, as they are not direct users of the software, computers, or cameras. However, we place great emphasis on the training of clinic personnel and support group facilitators, as well as the testing of new technologies to ensure the telehealth equipment does not affect the support group interactions.
An issue of usability arose in the support groups when participants did not speak directly into the microphone, making it more difficult for participants in remote sites to hear what was being said. This was especially important because some support group participants have hearing impairments. Facilitators were trained to intervene and remind the elders to speak directly into the microphone. In all sessions, facilitators strive to maximize the experience for participating elders by closely monitoring any potential usability issues that might decrease participation.
The Patient-Provider Relationship
Critics of telehealth have often pointed out that video-mediated communication in health care may be impersonal and affect the therapeutic relationship through the elimination of personal contact. During video-mediated interactions between patients and providers, participants see and hear each other and can develop rapport and demonstrate empathy using both verbal and nonverbal cues. However, human touch is lacking in these interactions.
Extensive research demonstrates the value of human touch in caring, especially for specific populations. Frail elderly patients and their family members are known to benefit from human touch (Ziembroski, Gilbert, Bossarte, & Guldberg, 2003). Therapeutic touch has been found to be one of the highest ranked hospice interventions in both effectiveness and frequency of use (Messenger & Roberts, 1994). Physical closeness is conceived to be an embodiment of caring in clinical care (Gardner, 1992). As Sandelowski (2002) argued, physical encounters are especially dramatized in touch and let neither nurse nor patient “forget that I am my body” (p. 59). Thus, the lack of human touch may present ethical concerns in research and practice initiatives that reply on technological applications.
In cases of remote monitoring and use of videoconferencing to support “teleconsultations,” technology introduces a new kind of clinical encounter that lacks human touch and where clinical care no longer necessarily occurs in any certain physical space. What Liaschenko (1997) called “the arena of direct care” (p. 47) expands in these instances to capture stakeholders who are separated by geographical distance. We still need to examine how human touch affects the patient-provider relationship and whether it can be justified as a platform for research and service development that would otherwise not be delivered due to cost, geographical distance, or other access barriers.
In some cases, technology may best be used to supplement, rather than substitute, traditional health care transactions. While the value of technology-enabled interactions should not be underestimated, the significance of human touch and direct communication must be assessed for a given population, specialty, or intervention. A variety of factors that affect the patient-provider relationship in the context of technology-enabled interactions need to be taken into consideration.
NPCCTN Example. Within the NPCCTN, some clinical specialties have lent themselves more readily to technology-enabled interactions between providers. For example, teledermatology uses a store-and-forward technology in which a picture of the skin is taken at the remote clinic and sent to the specialist for diagnosis. For teledermatology, the importance and relevance of face-to-face communication between the remote clinic provider and patient is low.
In contrast, the telehealth network also provides telepsychology. In a telepsychology clinical encounter, the importance of face-to-face communications and therapeutic touch is much more relevant. In the case of telepsychology, important clues to the patient’s well-being may be lost with a poor network connection or by not having in-person contact. Even within specialties, some practitioners have shown a stronger “monitor-side manner” ability to interact effectively with a patient through the peculiarities of the medium. This skill can be honed, just as bedside manner has traditionally been developed.
In the NPCCTN, technology enables care to be provided to elders in regions where no specialized services are otherwise available. For example, in rural Alaska, winter weather conditions prohibit any access to health care services outside the rural clinic. Therefore, the availability of services via telehealth is improving health care for elders in these areas. Furthermore, the NPCCTN strives to maximize the quality of the video encounters by training providers to use the videoconferencing equipment effectively. Providers are trained to show empathy and engage patients in discussions, as well as use small talk and seek feedback from patients.
Telehealth applications have the potential to increase access to care for rural and underserved populations, to enhance traditional care, and to improve monitoring for older adults. The introduction of new tools in the health care context is always associated with challenges and ethical considerations that need to be addressed before issues of reimbursement and liability are fully explored. Health care providers face a challenge in maintaining high-quality services while aiming to control the cost of care for older adults. Researchers planning to use technology such as telehealth need to assess technical feasibility and acceptance before launching large-scale studies. While telehealth can be a promising tool, the issues outlined in this article require further exploration for gerontology research and practice.
Guidelines may advance exploration to ensure ethical research and practice. For example, the American Telemedicine Association (1999) provides specific guidelines for the design and use of telehealth applications for home care. These guidelines provide patient, provider, and technology criteria. Patient criteria involve a set of recommendations such as the need for informed written consent obtained from patients, selection of patients able to handle the equipment, and training. Provider criteria entail training issues and after-hours support. Technology criteria relate to the operation and maintenance of equipment, establishment of clear procedures and safety codes, and protection of patient privacy and record security. These guidelines serve as practical recommendations for the proper use of telehealth systems in a variety of settings and inform both practice and clinical research.
Innovations in health care and support services must be appropriate. Several factors influence appropriateness, including disease stability, functional limitations, technological infrastructure, perception of the system, and available support, as well as capacity for informed consent. Patients challenged by medication use, for example, might benefit from a home-based telehealth application that provides monitoring and reminders. On the other hand, individuals in need of strong emotional or psychosocial support may need the benefits of human touch, thus rendering a video encounter inappropriate and inadequate. Depending on the way it is used and other available options, technology may increase access to care for underserved populations or, in some cases, deprive them of traditional care. Telehealth is most efficient when it allows for access to specialized care when no other options are available, as is the case with the NPCCTN.