Chronic Illness: Telehealth Approaches to Wellness
Stanley Finkelstein and Rhonda Cady
The underlying goal of health reform in the United States (Office of the Legislative Counsel, U.S. House of Representatives, 2010) is achievement of the Institute for Healthcare Improvement’s (IHI) Triple Aim (2015), which encompasses improved health and improved experience of care with reduced cost. The digital health technology that is considered fundamental to achieving this goal includes technologies such as mobile health, health information technology, big data analytics, wearable computing, and telehealth (Ostrovsky, Deen, Simon, & Mate, 2014). This chapter focuses on the evidence base for telehealth and how this evidence advances the Triple Aim by influencing policy decisions by clinicians, health systems, and payers (private and government).
Telehealth encompasses the diagnosis and management of health, along with the education of health professionals and consumers. Rapidly replacing the original but restrictive term of telemedicine, telehealth reflects a movement from clinician-to-clinician interactions to clinician–consumer interactions. Technology used to support these interactions falls into four domains: live video, store and forward, remote patient monitoring, and mobile health (Center for Connected Health Policy, 2016). The primary potential for telehealth systems is to provide the necessary infrastructure for health delivery systems to move from acute facility-based episodic care provision to remote or virtual wellness and chronic care management. Home telehealth provides the continuity of care often lacking when a person is diagnosed with a new condition or discharged from a prolonged hospitalization.
Home telehealth systems support care delivery between clinicians and consumers regardless of physical location. The rapid emergence of home telehealth systems is a direct result of miniature devices and mobile computing. Relatively inexpensive, ubiquitous, and easy to use, these systems include wearable technologies like fitness trackers, smart watches, smartphones, wearable cameras and smart clothing, and movement monitoring and sensor devices. Mobile computing allows wireless connection between these systems and the Internet, and supports seamless transmission of data between devices.
A consideration of mobile computing is the speed, or bandwidth, of the mobile wireless connection. Typically classified as 3G and 4G, a 4G connection can be 10 times faster than 3G. Whether 3G, 4G, or long-term evolution (LTE), these mobile wireless connections utilize two types of connection speeds: upload and download. The download speed is the rate at which data is received from another source, whereas the upload speed is the rate at which data is sent to another source. Because the majority of mobile computing activity involves downloading data (e-mail, video and audio streaming), download speed is often three to four times faster than upload speed. This difference is an important consideration for home telehealth interactive video applications. A minimum upload speed of 384 kilobytes per second (kbps) is needed for both quality audio and video clarity with a proprietary video application (Cady, Kelly, & Finkelstein, 2008), and similar speed requirements have been identified for Skype video calls (Choi et al., 2014).
Can home telehealth accelerate achievement of the IHI Triple Aim? A recent report analyzed health technology interventions to determine which has the greatest value toward achieving the IHI Triple Aim. Of the 87 technologies evaluated, 23% were evidence-based and the majority of these technologies were aimed at providers (Ostrovsky et al., 2014). Developing an evidence base for home telehealth is paramount to reform and requires a focused and rigorous research agenda. Our research group has investigated the use of remote patient monitoring and home telehealth technologies in diverse populations for the past 35 years. These studies paralleled the development of instrumentation, computers, and communication systems that made the growth, acceptance, and utilization of home telehealth possible. The goals for these studies have been to improve access while providing quality care with cost-effective systems that are satisfactory to consumers and clinicians. In most studies, a randomized, controlled trial methodology has been used so that home telehealth results are evidence-based and can be compared with standard care when policy decisions that affect the transition from the research laboratory to the community setting are considered. Participants in all described studies provided informed consent, following the recommendations of our institutional review board.
CHRONOLOGICAL MILEPOSTS IN HOME TELEHEALTH
Cystic Fibrosis Monitoring Program—Low Tech Data Collection and Communication
An early home measurement monitoring system was developed for assessing progress and planning changes in care for patients with cystic fibrosis (CF; Finkelstein et al., 1986). Study participants kept a paper diary to record daily relevant clinical measurements, symptoms, and free text. Participants were instructed to send their diary to the study data center each week, using the U.S. Postal Service. Diary data was then entered into the study database. Daily measurements made at home were lung capacity, body weight, breathing rate, and pulse. The kind and frequency of coughing and wheezing were included on the list of possible symptoms. Lung capacity was measured with an exercise inspirometer; respiratory rate and pulse were measured by participant caregivers by observation and by counting. During the first 2 years of participation, the 111 subjects maintained a consistent 75% to 80% diary response rate, demonstrating that subjects/caregivers could and would utilize the equipment package, instructions, and protocol to successfully provide clinically useful data from home without the assistance of clinically trained personnel. It presented the possibility of detecting adverse health trends earlier in their development, so that patients could be treated before serious complications developed, thereby preventing the large fluctuations in health status that often accompany CF. This study was a precursor to subsequent remote monitoring developments, which evolved with the emergence of low-cost personal computers (PCs), electronic spirometers and other miniaturized devices, and advanced communication systems.
Overall lessons learned from the CF home monitoring were that patients and caregivers could make and transmit measures from home, and that this home data could be clinically useful. These findings added to the emerging body of evidence regarding successful use of manual observations of home monitoring data to identify changes in clinical status, and the development of computer decision systems to automate this process (Slagle, Finkelstein, Leung, & Warwick, 1989). As with most remote monitoring telehealth programs at that time, a sustainable funding source did not exist and the CF program ended with the completion of the research program.
Lung Transplant Home Monitoring Program—Electronic Data Collection, Miniaturization of Devices, Landline Communication
The lung transplant program at the University of Minnesota has performed more than 900 lung transplants since its inception in 1986. The lung transplant home monitoring research program, which was active from 1992 through 2014, provided a framework for conducting telehealth research that facilitated clinical translation. The underlying premise of remote home monitoring was, and still is, that timely information from clinically informative variables that are remotely acquired could lead to early detection and thus early intervention before problems become more intractable. For lung transplantation, home monitoring was designed to provide early indications of the onset of infection or rejection episodes in the transplanted lung. Ideally, this early intervention would improve the patient’s health status and increase survival while containing cost (Finkelstein et al., 1996). Some key questions related to remote monitoring emerged as the program progressed, including patient and clinician acceptance, quality of patient-measured physiological variables, home-to-clinic communications, and data overload.
In the initial home monitoring study, a specially designed electronic spirometer/diary instrument was used by subjects at home to record full spirometry, vital signs (blood pressure, pulse, weight, temperature), and symptoms (coughing, sputum, shortness of breath, exercise). Data was stored in the device until downloaded over each subject’s regular landline to the study data center. Subjects were requested to do this download weekly. Possible bronchopulmonary events that needed follow-up clinical evaluation were identified by the study nurse coordinators during weekly data review. Validity analysis confirmed that home spirometry provided reliable estimates of clinic-measured spirometry (Finkelstein et al., 1993; Lindgren et al., 1997). These results helped to overcome the initial concerns about the clinical quality of home data regarding both instrument quality and the ability of study subjects to perform clinical quality measurements at home. When the Centers for Medicare and Medicaid Services (CMS) established the reimbursement policy for home spirometry for asthma and lung transplant recipients, they cited several articles from this study as providing the scientific rationale for their decision.
Further studies in this program utilized new advances in telecommunications, making it easier for subjects to complete the monitoring protocol, such as automated timed downloads every night. The development of clinical decision support tools (Finkelstein, Scudiero, Lindgren, Snyder, & Hertz, 2005) could address economic and clinical factors related to chronic disease management, such as the data overload resulting from frequent monitoring, lessening the need for clinic visits, and the growing shortage of skilled nurses caring for the rapidly growing aging and chronic disease population.
THE TELEHOMECARE PROGRAM—INTERNET ACCESS,VIRTUAL VISITS, ELDERLY SUBJECTS
The TeleHomeCare project was a randomized controlled trial to assess the effectiveness of virtual visits, Internet access, and remote physiological monitoring between a participant’s home and home health care (HHC) agencies (Finkelstein et al., 2004). Four rural and one urban HHC agencies participated in the study. TeleHomeCare combined actual and virtual HHC visits with the goal of delivering quality care at acceptable cost for patients receiving skilled nursing care at home. Sixty-eight patients with congestive heart failure (CHF), chronic obstructive pulmonary disease (COPD), or chronic wound care were randomized as subjects in the three arms of the study. The control group received standard HHC as determined by their underlying condition. Two intervention groups received varying levels of telehealth. One intervention group received standard HHC supplemented with virtual visits and Internet access. A second intervention group received standard HHC, supplemented with virtual visits, Internet access, and remote physiological monitoring. Subjects in the second intervention group received pulse oximeters (for oxygen saturation), electronic spirometers (for pulmonary function), and blood pressure cuffs depending on their underlying condition. Virtual visits consisted of two-way audio and video interactions between a health care provider at a central site and the patient at home, transmitted over standard telephone landlines. The overall objectives were to demonstrate that such a program can improve the quality and reduce or contain costs of skilled HHC, while increasing patient access to care and satisfaction with the HHC intervention
Study outcome measures indicated that home telehealth increased satisfaction of both nurses and clients, was less costly than in-person HHC visits, and may reduce the need for increasing levels of care after discharge from the HHC program (Finkelstein, Speedie, & Potthoff, 2006). The TeleHomeCare Program demonstrated the technical feasibility of extending telehealth services to homebound older adults; illustrated new avenues for socialization between elderly, homebound patients and their home care nurses; and showed the potential for improved clinical outcomes at a lower cost. However, policy that reimburses HHC nurses for interactive audio and video communication within a beneficiary’s home was ineligible for Medicare reimbursement. Lacking a sustainable payment mechanism, programs such as the TeleHomeCare Program could not continue after research support ended.
THE VIRTUAL ASSISTED LIVING UMBRELLA FOR THE ELDERLY (VALUE) PROGRAM: VIRTUAL VISITS,WEB-BASED SERVICE PORTAL, AGING IN PLACE ELDERLY SUBJECTS
The VALUE project evaluated the impact of a home telehealth program on extending the ability of frail elderly individuals to remain living independently in their home environment. It was a two-armed randomized controlled trial conducted at the University of Minnesota, a rural health care agency, and an urban health care agency. VALUE provided virtual visits with a home care nurse, physiological remote monitoring and a web-based portal for ordering health-related services, messaging between client and health provider, and Internet access, all via a broadband connection (Finkelstein, Speedie, Zhou, Ratner, & Potthoff, 2006).
A total of 99 individuals participated in the study. Control group subjects continued with their regular living accommodations, obtaining supportive services as they did ordinarily, by telephone or visits to senior and community centers. Intervention group subjects received the VALUE workstation consisting of a PC platform with broadband (digital subscriber line [DSL] or cable) connectivity, Health Insurance Portability and Accountability Act (HIPAA) compliant interactive video software, and a web camera. Intervention group subjects also received physiological monitoring devices appropriate to their underlying health condition or continued using monitoring devices they were already utilizing as part of their standard care. A web portal customized for each intervention group subject facilitated access to web-based health education resources, a telehealth nurse, and electronic ordering of various health and community services. It was designed for improved accessibility by older adults and thus included large fonts, simple colors, and easy navigation by mouse pointer of arrow keys (Demiris, Finkelstein, & Speedie, 2001).
Study results indicated that frail older adults could successfully utilize a telehealth platform if it is properly designed to accommodate the usual constraints imposed by aging. Intervention subjects were very satisfied with the VALUE technology, virtual visits, and nurse interactions (Finkelstein et al., 2007). They indicated that VALUE met their expectations and they would recommend VALUE to others.
Compared to control group subjects, the intervention group subjects had significantly fewer emergency department visits, higher use of pharmacy delivery services, and lower use of transportation services. As in earlier studies, lack of continued funding made these advances unsustainable in the economic environment of that time.
THE U SPECIAL KIDS PROGRAM: APRN CARE COORDINATION,TELEPHONE COMMUNICATION, CHILDREN WITH MEDICAL COMPLEXITY
The U Special Kids (USK) program at the University of Minnesota utilized “low-tech” telehealth modalities that included telephone, fax, and e-mail to deliver care coordination to children with medical complexity (CMC; Cohen et al., 2011). Within the USK Medical Home Center (Kelly, Golnik, & Cady, 2008), a team of two advanced practice nurses and a pediatrician delivered telehealth care coordination to more than 100 CMC living throughout the state of Minnesota. CMC have multiple chronic health conditions, receive care from multiple specialists, require numerous medications or rare pharmaceuticals, often have repeated hospitalizations and/or emergency room visits, and are dependent on life-sustaining technology (i.e., feeding tube, tracheotomy, central line, or oxygen; Cohen et al., 2011).
An evaluation of the USK program reviewed hospitalizations within the affiliated health system during the first 5 years of USK enrollment (Cady, Finkelstein, & Kelly, 2009). Findings indicated a significant reduction in unplanned hospitalizations (e.g., acute illness or injury, complications from underlying conditions) from year 1 to year 2, and stabilization over the subsequent 3 years, while planned hospitalizations (e.g., scheduled device insertion/replacement) remained relatively stable over the 5-year period (Cady et al., 2009).
Until recently, the primary model of reimbursement for health care services was fee-for-service (FFS). In this model, reimbursement is tied to “in-person” service use such as clinic visits, emergency department visits, and hospitalizations. Programs like USK that provided telehealth care coordination services were not considered reimbursable by Medicaid and third-party payers and (more importantly) by reducing hospital utilization, reduced FFS reimbursement. Despite the positive evaluation findings, the economic climate of 2008 and FFS reimbursement made funding for the program unsustainable and USK was eliminated.
Nearly 10 years later, a total cost of care (TCC) reimbursement model has flipped the paradigm and is rapidly replacing the FFS model. Within the TCC model, reductions in unplanned high-cost hospitalizations are “rewarded” by sharing of cost savings between the health system and payer. In this new paradigm, health system revenue is linked to the provision of high-quality, cost-effective care, and the value of telehealth care coordination programs like USK is becoming readily apparent.
THE TELEFAMILIES PROGRAM: APRN CARE COORDINATION,TELEPHONE AND VIDEO INTERVENTIONS, CHILDREN WITH MEDICAL COMPLEXITY