14 Consumer Health Informatics and Telehealth PATRICIA FLATLEY BRENNAN AND JUSTIN B. STARREN After reading this chapter you should know the answers to these questions: ● What factors contribute to the increasing pressure for lay people to actively partici- pate in health care? ● How does direct access to health information technologies assist patients in partici- pating in their own health care? ● Critically appraise the informatics requirements for successful telehealth. ● How can lay people determine the value of a telehealth innovation such as a health- related Web site or an on-line disease management service? 14.1 Introduction Complexity and collaboration characterize health care in the early 21st century. Complexity arises from increasing sophistication in the understanding of health and disease, wherein etiological models must take into account both molecular processes and physical environments. Collaboration reflects not only inter-professional collab- oration, but also a realization that successful attainment of optimal well-being and effective management of disease processes necessitate active engagement of clini- cians, lay persons, concerned family members, and society as a whole. This chapter introduces the concepts of telemedicine, telehealth, and consumer health informatics (CHI) and illustrates how maturing computer networks like the Internet make possi- ble the collaborations necessary to achieve the full benefits of our growing under- standing of health promotion, disease management and disability prevention. Consider the following situation: Jeffery is an 18-year old high school senior, who is newly diagnosed with Type I diabetes following an acute hyperglycemic episode which required hospitalization. After four days he is medically stable and ready for discharge. He is able to measure his blood glucose and can safely administer the appropriate dose of insulin. The nurse notes that Jeffery some- times has trouble calibrating the insulin dose to the blood glucose reading. She also notes that his father is short and impatient with Jeffery, expressing many concerns that Jeffery “may not be able to handle such a complex medical problem on his own”. 511 512 P. F. Brennan and J. B. Starren 14.1.1 Telemedicine, Telehealth and Reducing the Distance Between the Consumer and the Healthcare System? Warner Slack calls the patient “the most underused resource in the health care delivery system.” Telehealth and telemedicine approaches have the ability to bring professionals and patients closer together, and CHI innovations insure that the patient has access to the information resources necessary for them to participate fully in the health care process. Historically, health care has usually involved travel. Either the health care provider traveled to visit the patient, or more recently, the patient traveled to visit the provider. Diabetic patients, like Jeffery, typically meet with their physician every two to six months to review data and plan therapy changes. Travel has costs, both directly, in terms of gasoline or transportation tickets, and indirectly, in terms of travel time, delayed treatment, and lost productivity. In fact, travel has accounted for a significant propor- tion of the total cost of healthcare. (Starr, 1983) Because of this, both patients and providers have been quick to recognize that rapid electronic communications have the potential to improve care by reducing the costs and delays associated with travel. This has involved both access to information resources, as well as direct communication among various participants, including patients, family members, primary care providers and specialists. As is the case with informatics, the formal definitions of telemedicine and telehealth tend to be very broad. One widely circulated definition is: Telemedicine involves the use of modern information technology, especially two-way inter- active audio/video communications, computers and telemetry to deliver health services to remote patients and to facilitate information exchange between primary care physicians and specialists at some distance from each other. (Bashshur, et al., 1997). It is clear from the definition above that there is considerable overlap between telemedicine and biomedical informatics. In fact, one will frequently find papers on telemedicine systems presented at biomedical informatics conferences and presentations on informatics at telemedicine meetings. The major distinction is one of emphasis. Telemedicine emphasizes the distance, especially the provision of care to remote or iso- lated patients and communities. In contrast, biomedical informatics emphasizes meth- ods for handling the information, irrespective of the distance between patient and provider. A question that frequently arises in any discussion of this topic is the distinc- tion between telemedicine and telehealth. Although not formalized, a frequent distinc- tion between the two terms is that telemedicine is an older and a narrower term, connoting communication between two persons. Telemedicine is often associated with video-conferencing between patients and providers. In contrast, telehealth is a newer and broader term that has been used to include both traditional telemedicine as well as interactions with automated systems or information resources. Because of its broader scope, we are using the term telehealth in this chapter. Another topic of discussion is whether consumer-health informatics (CHI) is a sub-domain of telehealth or whether they are two separate domains. This question lacks a simple answer. As can be seen in Figure 14.1, both CHI and telehealth are ways to bridge the distance between patients Consumer Health Informatics and Telehealth 513 Figure 14.1. Connections. The figure shows different ways that electronic communications can be used to link patients with various health resources. Only connections directly involving the patient are shown (e.g., use of the EHR by the clinician is not shown). Some of the resources, such as Web sites or telehome care, can be accessed from the patient’s home. Other resources, such as remote surgery or imaging, would require the patient to go to a telehealth-equipped clinical facility. and necessary health resources. Those resources could involve interaction with specific persons, such as physicians, nurses or other patients. They could also involve interac- tions with computerized information, such as Web sites, or with expert knowledge, such as the remote interpretation of a images. Collectively, CHI and telehealth transport healthcare knowledge and expertise to where they are needed, and are ways to involve the patient as an active partner in care. In spite of their similarities, CHI and telehealth come from very different historical foundations. Telehealth derived from traditional patient care, while CHI derived from the self-help movements of the 1970’s. (See Section 14.2) Largely owing to this historical separation, practitioners and researchers in the two fields tend to come from different backgrounds. For these reasons, we are present- ing CHI and telehealth as two distinct, but closely related domains with central ties to biomedical informatics. 14.1.2 Consumerism, Self-Help, and Consumer Health Informatics Contemporary consumers experience greater demands to participate in their own care than have patients at any time since the emergence of modern health care. Patient participation takes many forms: shared decision-making, self-care, and collaborative practices. In essence, it reflects a shift from the patient as the silent recipient of 514 P. F. Brennan and J. B. Starren ministrations from a wise, beneficent clinician to an active collaborator whose values, preferences, and lifestyle not only alter predisposition to certain illnesses but also shape the characteristics of desirable treatments. The legacy of the self-help movement of the 1970s and the consumerism of the 1980s is growth in the importance of the patient as a full participant in health care. Patients participate by self-monitoring, by evaluating and choosing therapeutic strategies from a set of acceptable alternatives, by implementing the therapies, and by evaluating the effects. Recent social and clinical changes in the manner in which care is provided shift clinical-practice activities that were once the purview of licensed professionals to patients and their family caregivers. The failure of 50 years of bioscience research to produce definitive clinical remedies for more than a handful of disease states requires that medical science be tempered with patient prefer- ences (e.g., between surgical and radiation therapies). Furthermore, there is growing belief that behavioral interventions and alternative therapies hold great promise as adjuncts, or even replacements, for traditional medical therapies. These trends con- tribute to a contemporary healthcare environment that is more diffuse and involves more people than ever before. The home and the community are fast becoming the most common sites where health care is provided. Information technologies necessary to sup- port patients and their family caregivers must not only migrate from the inpatient insti- tution to the community but also be populated with information resources that help to guide patients in complex healthcare decision-making, to communicate with health pro- fessionals and to access the clinical records and health science knowledge necessary to help them comprehend their health states and participate in appropriate treatments. The role