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eCare at a Distance: Opportunities and Challenges

Authors:

Abstract

Delivering health care to a growing world population and to communities in underserved areas is a major global health challenge. Over the last few decades, many approaches have been developed under various frameworks such as telemedicine, telehealth, eHealth, and mhealth. This chapter reviews the evolution of these networks for coordination of patient care and elder care. We discuss the challenges in the design, implementation and evaluation of these systems, and outline some opportunities and challenges for future development.
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eCARE AT A DISTANCE:
OPPORTUNITIES AND CHALLENGES
Yuri Quintana1 e Charles Safran2
INTRODUCTION
Coordinating care at a distance has been a long-standing challenge in bringing health services
to people in their homes and to rural areas. Delivering healthcare services for a growing
population is increasingly a challenge for healthcare providers. The world population is at
7 billion and is expected to reach 9 billion by 2050 (UNITED NATIONS, 2012, 2013). The
number of healthcare workers is growing at a slower rate than the population (WHO, 2014).
Many countries across the globe are finding it difficult to maintain enough healthcare workers
to provide care to their populations. The problem is exacerbated when healthcare workers
migrate to larger cities in their home countries or to higher-income countries, leaving many
people underserved for healthcare services worldwide (DELOITTE, 2014). Emerging mobile
technologies and Internet are allowing systems to be developed more quickly and at a lower
cost reaching a larger number of patients. Such technologies can be used to deliver care to
patients at home and in remote areas to reduce disparities in health care and maldistribution of
specialists. This article reviews the evolution of care delivered at a distance using technologies
such as telemedicine services, senior health programs, mobile health and communities of
practice. We illustrate the barriers and challenges to providing care at a distance and provide
suggestions for future growth.
1 PhD, Division of Clinical Informatics at Beth Israel Deaconess Medical Center and professor Harvard Medical School.
2 MD, Division of Clinical Informatics at Beth Israel Deaconess Medical Center and professor Harvard Medical School.
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TELEMEDICINE, TELEHEALTH, eHEALTH, AND mHEALTH
The terms telemedicine and telehealth came into use in the 1960s to describe programs to
deliver healthcare services to rural patients with television-like systems. In 1978, telehealth was
formally defined in a United States Government report (BENNET et al., 1978) as “communication
systems that can enhance the effectiveness of both existing and new healthcare delivery
approaches and extend the accessibility of care services to rural populations.” Telehealth was
used instead of telemedicine to “imply a broader range of health-related activities, including
patient and provider education and administration, as well as patient care.” The envisioned
activities included: 1) patient care and management, such as diagnosis, consultation and
instruction; 2) administration, such as billing, updating patient records, exchange of information
with insurers, lab test exchange and scheduling appointments; 3) educational applications,
including physician education, training for health staff and patient education for both disease
management and preventive care.
In the early 2000s (MITCHELL, 2000; EYSENBACH, 200; DELLA MEA, 2001), the term
eHealth was developed to include emerging health technologies that used the Internet
and electronic commerce transactions. As the field expanded, there was no consensus
on the definition of eHealth. One review in 2005 found over 51 unique definitions (OH,
2005), but the delivery of care at a distance remained one of the goals of eHealth.
In 2005, the Secretariat of the World Health Organization (WHO) drafted a report titled
“eHealth” (WHO, 2005) in which the term was said to mean “use of information and
communication technologies locally and at a distance”; the report said that eHealth
“presents a unique opportunity for the development of public health. The strengthening of
health systems through eHealth may contribute to the enjoyment of fundamental human
rights by improving equity, solidarity, quality of life and quality of care.” In 2005, the
World Health Organization adopted resolution WHA 58.28, which urged member states
“to reach communities, including vulnerable groups, with eHealth services appropriate
to their needs.” As of 2015, WHO defines eHealth as:
the transfer of health resources and health care by electronic means. It encompasses three main
areas: 1) The delivery of health information, for health professionals and health consumers,
through the Internet and telecommunications; 2) Using the power of IT and e-commerce to
improve public health services, e.g. through the education and training of health workers; and
3) The use of e-commerce and e-business practices in health systems management.
Several large-scale care-at-a-distance programs have shown significant outcomes. In
the United States in 2008, Kaiser Permanente Northern California (KPNC) implemented
an inpatient and ambulatory care electronic health record system for its 3.4 million
members and developed a suite of patient-friendly Internet, mobile and video tools
(PEARL, 2014). The number of virtual “visits” grew from 4.1 million in 2008 to
around 10.5 million in 2013. In their annual survey of physicians, more than 90%
of respondents said that the availability of online tools had allowed them to provide
higher-quality care for their patients. Access to electronic services varied by ethnic
group, from 50.2% of white non-Hispanic adults to 34.1% of African-Americans and
36.4% of Latinos. In order to ensure accessibility of services, the healthcare system
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continued in parallel to provide patients with communication via paper, phone and
in-person support care services.
Albuquerque, New Mexico-based Presbyterian Healthcare Services adapted the Hospital at
Home® model (CRYER, 2012) developed by the Johns Hopkins University Schools of Medicine
and Public Health to provide acute-hospital-level care in patients’ homes. An evaluation
comparing 323 program patients with 2,405 patients in an acute care hospital showed that the
patients in the program had as good as or better clinical outcomes than similar inpatients, and
they had higher satisfaction levels. This program achieved savings of 19% over costs for similar
inpatients. These savings were predominantly derived from a lower average length of stay and
use of fewer laboratory and diagnostic tests than for similar patients in acute hospital care.
In the United States, between July 2003 and December 2007, the Veterans Health Administration
introduced a national home telehealth program, Care Coordination/Home Telehealth (CCHT).
Its purpose was to coordinate the care of veteran patients with chronic conditions and avoid
unnecessary admissions for long-term institutional care. An evaluation (DARKIN, 2008) of
17,025 CCHT patients showed several benefits: a 25% reduction in the number of bed days
of care, a 19% reduction in the number of hospital admissions, and a mean satisfaction rating
score of 86% after enrollment in the program. The cost per patient was reduced by $1,600
compared to other noninstitutional care programs and nursing home care.
Another large coordinated care-at-a-distance program in the United States is the Health
Buddy Program, which uses a telehealth monitoring device with care management for
chronically ill Medicare beneficiaries in the Pacific Northwest (BAKER, 2011). The program
uses a handheld device with four buttons and a large, high-resolution color screen located
in patients’ homes that is linked via telephone with care managers. Patients using the device
receive daily questions tailored to their diagnoses about such things as their symptoms,
vital signs and health behaviors. Care managers upload patients’ responses to a web-based
computer application that risk-stratifies their responses for review. The program uses an
“exception-based” approach that aims to identify the need for care management interventions
based on symptoms and deteriorating vital signs and to identify gaps in patients’ health
behaviors and knowledge. After reviewing patients’ information, care managers can contact
patients who appear to be at risk for deterioration or require intervention to ensure that they
receive appropriate services. An evaluation study included 1,767 intervention-group and
1,767 control-group members—one matched control for each beneficiary in the intervention
group. The mortality rate of the intervention group was 2.7% lower than the control group.
The evaluation showed a spending reduction of 7.7% to 13.3% ($312 to $542) in average
quarterly spending after introduction of the program, relative to the baseline period.
In the United Kingdom, the Whole Systems Demonstrator (HENDERSON, 2014) is a telehealth
program involving 6,191 patients and 238 GP practices across 3 sites, Newham, Kent and
Cornwall. The focus is on 3 conditions: diabetes, chronic obstructive pulmonary disease
(COPD) and coronary heart disease. A study (STEVENTON, 2012) of 3,230 people with
diabetes, COPD disease or heart failure recruited from practices between May 2008 and
November 2009 showed that patients in the program had lower mortality and emergency
admission rates than the control group.
A review of online peer support programs for self-management of diabetes in international
settings found improvements in symptom management, diet, blood pressure, body mass
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index and blood sugar levels for many of those taking part in the programs. The programs
were implemented in Cameroon, South Africa, Thailand and Uganda and included patient-
to-patient peer support, assistance with daily management, social and emotional support,
linkage to clinical care and ongoing availability of support.
Since early 2000, mobile phones have been used for health applications (LAXMINARAYAN,
2000; PRICE, 2002; ISTEPANIAN, 2004, 2005). Mobile phones provide an opportunity to
reach large numbers of patients who may not be able to visit a healthcare facility. The
growth of the mobile health sector is being tracked by several centers, including the
World Health Organization for eHealth (http://www.who.int/goe) and the Mobile World
Center (http://www.mobilehealthglobal.com), which have identified implementation across
a wide range of healthcare services in every region of the world. The United Nations-
sponsored International Telecommunications Union (http://www.itu.int) tracks global usage
of communications; it estimates that of the 7 billion people on earth in 2014, more than
2.3 billion had mobile phone subscriptions, 55% in the developing world. Several projects
have demonstrated the feasibility of deploying health services in low- and middle-income
countries (HARTZLER, 2014). Mobile health represents one of the fastest-growing sectors,
but more work is needed to understand how to successfully implement and sustain mobile
health, particularly in low-resource settings.
Evaluation of the economic impact of care-at-a-distance programs has shown some positive
results, but there are also limitations in the various methods. A recent systematic review and
meta-analysis (ELBERT, 2014) was conducted to determine the care effectiveness and cost
of eHealth interventions in somatic diseases. The review included eHealth interventions
in adults and children with somatic diseases (illnesses with a physical rather than mental
cause) and those focusing on family caregivers. Interventions that were evaluated had to
meet the following criteria: (1) data was obtained from the patient or family caregiver;
(2) data was electronically transferred over a distance; and (3) personalized feedback
from a healthcare professional was given. The review included articles that reported
health-related outcomes, costs, patient satisfaction and self-management. Excluded were
interventions that were not home-based or not patient- or family-caregiver-oriented. Also
excluded were meta-analyses that included nonrandomized studies unless a subgroup
analysis of randomized studies was performed. The review was limited to publications that
were written in English or Dutch, for which the full texts were available online. Thirty-one
articles were included in the final review. Seven (23%) showed that eHealth interventions
were effective in health- or cost-related outcome measures. Thirteen (42%) were less
confident about the effectiveness or cost-effectiveness of eHealth interventions, but
suggested that these initiatives were promising or had potential. Eleven (35%) concluded
that evidence on the effectiveness and cost-effectiveness of eHealth interventions was still
lacking, limited, or inconsistent.
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ELDER CARE COORDINATION
Global population statistics show that in most countries a growing proportion of the population is
65 years old or older. As medical care improves, many citizens are living well beyond 80. Elderly
people have increasing health problems and diminishing cognitive function, and as they age, they
may need to transfer aspects of control of their personal health information and decision making
to one or more caregivers and family members. New applications are being developed to support
online care coordination with elderly populations. An example is InfoSAGE (Information Sharing
Across Generations and Environments), which is being designed to support communication-
sharing and care coordination for elders (www.infosagehealth.org) between caregivers and family.
The goal of this system is to support an incremental transition to shared management of care.
A recent literature review (FISCHER, 2014) on health information technology tools for the
elderly and their families and caregivers identified the challenges to adoption of technology
by users. It found that the barriers included access to technology, lack of familiarity with
technology, need for support, trust and privacy concerns, design features of systems and
physical issues such as sight, hearing and cognitive challenges.
A survey (HEART, 2013) of elderly people in the United States and Israel found that of 123
users surveyed, 43% had used computers in the last year compared to 41% of the Israelis.
The study found that perceived behavioral control emerged as the most significant factor
affecting intention to use computers. The main reason for non-use was “no interest” or “no
need.” When asked about reasons for not using computers for new applications, only 23%
indicated that they felt they were too old to learn, and 62% indicated they saw no need for the
application. Another systematic review (VEDEL, 2013) of 112 health information technologies
in geriatrics and gerontology found that among the most important challenges faced in age-
related care was the issue of simplicity of the systems; systems that are difficult to use or send
too many reminders might not be adopted by patients or caregivers.
Several studies have been conducted to assess what health services seniors are more willing
to use online. One study in Poland (BUJNOWSKA-FEDAK, 2014) surveyed 286 patients over
60 years old to assess attitudes and preferences for selected eHealth services. The study found
that nearly one-third of the study respondents had a computer at home, and 61% of these
(19% of all surveyed elderly) used it. A substantial majority (84%) of supporters expressed a
desire to receive simple medical recommendations via mobile phone or computer, and 61%
wanted to receive the results of tests by e-mail and get short message service reminders for
scheduled visits or prescribed medications. Slightly less than half (47%) of eHealth supporters
said they would request appointments online. Among the most important factors associated
with support of eHealth services were urban residence, higher education, and normal
cognitive function, as well as having a computer, Internet access, or a mobile phone. The
study concluded that the majority of elderly patients in this Polish community were not overly
enthusiastic about using information and communication technology tools for health care, but
a substantial percentage (41%) among this group supported selected eHealth services.
In Italy, a survey (COLOMBO, 2014) was conducted between December 2013 and January
2014 using a face-to-face questionnaire given to a statistically representative national sample
of 900 elderly Italians 65 to 74 years old. The survey found that of people 65 to 69 years
old, 24% owned and used computers, as opposed to 10.2% of people 70to74 years old.
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Of the users surveyed, 71% who accessed the Internet did so almost every day, and 45% who
currently used computers had started before they were 50 years old. A significant proportion
of the users surveyed looked for information about their well-being: 53.1% said they used the
Internet to check for updates about health, and 29.1% about their medical conditions.
A study by the Internet and American Life Project of the Pew Research Center (FOX,2015)
conducted from July to September 2013 included 6,224 people 16 years old or older living in
the United States. The study found that 59% of seniors (defined as those 65 years old or older)
used the Internet, up from 53% just the year before, and 47% had high-speed broadband
connections. The study reported that 77% of older adults had cell phones. A separate Pew
study found that 79% of caregivers had access to the Internet, and 88% of those looked online
for health information (SMITH, 2015).
Some elder care coordination programs have been developed. One project (LEMAY, 2013)
used home telemonitoring for patients 75 years old or older with complex heart failure.
During a 5-year period (2005–2009) with a total of 645 patients who had home monitoring,
244 patients 75 years old or older were compared with 350 patients under 75 years old. No
significant differences were found between the groups in terms of interventions for abnormal
signs, emergency room visits, hospitalizations and deaths. The study concluded that for this
type of remote care application, patients 75 years old or older did not require more resources
than younger patients to obtain care benefits and outcomes.
These studies indicate that care coordination at distance for the elderly has potential for
utilization by patients and their caregivers. System design considerations need to include
careful selection of services for which the elderly perceive a need, as well as ease of use of
systems for both seniors and caregivers.
OPPORTUNITIES
There are several drivers and enablers for care-at-a-distance programs.
Changing demographics: The world has a growing aging population that will have an
increasing number of healthcare needs. Many of these people will need care at home, since
there are not enough assisted living facilities. This is an opportunity for the development
of new care delivery models;
Mobile technology: Mobile technology is becoming cheaper, more powerful and more
widely available. Mobile devices have increasing processing power, security features such
as biometric fingerprint and face recognition, and higher-resolution screens. This will
facilitate more effective display;
Accessibility: Internet and phone accessibility is increasing worldwide. As more people
have access to both the Internet and mobile phones, more patients will be able to
communicate from a distance with healthcare providers;
Outcomes: Positive results for both cost and patient outcomes are being used as the basis
for the design of new systems and as justification for additional investments. As more
research evidence becomes available, there will be a stronger basis for justifying the
implementation of care-at-a-distance models.
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CHALLENGES
There are several challenges to developing care-at-a-distance programs.
Limited reimbursement: Many governments and health insurance providers have not
previously funded care-at-a-distance programs; however, more reimbursement funding is
becoming available for these activities to enable future growth. The United States recently
increased funding for remote care. As of January 1, 2015, the US Centers for Medicaid &
Medicare Services (http://www.cms.gov) began providing reimbursement to doctors for
using technology that assists them in providing 24/7 oversight of patients with two or more
chronic illnesses. The US government has also encouraged the formation of accountable care
organizations (ACOs), and bundled payment models have rewarded the implementation and
meaningful use of information technology. These programs are complex, and funding models
are still being developed. The European Union has implemented more progressive funding
models and has several groups such as the ICT & Ageing study (http://www.ict-ageing.eu),
whose main goal is to identify and understand the market barriers that currently hinder uptake
of ICT for independent living and active aging in Europe;
System interoperability and data integration: Connecting telehealth systems to electronic
medical records can be an expensive undertaking. A growing number of interoperable
standards is facilitating growth in this area from organizations such as the Continua Health
Alliance (http://www.continuaalliance.org), the US Office of the National Coordinator
for Health Information Technology (http://healthit.gov), the European Code of Practice for
Telehealth (http://www.telehealthcode.eu), and the ISO/IEEE 11073 Standards for Personal
Telehealth Systems Interoperability (http://www.iso.org) and IEEE (http://www.ieee.org);
Data filtering: The growing amount of data collected by these systems will require better ways
to filter the information to communicate the most relevant information to both patients and
health professionals;
Licensing: Some medical professional societies require health professionals to be licensed in
the state where the patient receives care. This can hinder the delivery of care by requiring staff
to seek licensing in each location where they interact with patients. The American Telemedicine
Association (www.americantelemed.org) is actively seeking reforms in the United States (ATA,
2014). The International Society for Telemedicine & eHealth (http://www.isfteh.org) is also
involved in global policy changes. Asian countries are moving toward mutual recognition of
medical practitioners in the Asia/Pacific region (ASEAN, 2014). Under Directive 2005/36/EC, the
European Union has agreements between member nations for the recognition of professional
qualifications of some medical professionals. Extending practice privileges beyond state and
national boundaries will facilitate more delivery of care at a distance;
Privacy and regulation: Healthcare privacy laws present a major challenge to the
development of care at a distance. The number of privacy laws is growing worldwide
(BAKER, 2015). While the importance of privacy is widely recognized, implementation
can be difficult, since existing regulations are extensive and complex. In the United
States, medical privacy is governed by state and federal regulations such as the Health
Insurance Portability and Accountability Act (HIPAA) (http://www.hhs.gov/ocr/privacy).
In Europe, medical privacy is governed by regulations such as the European Convention
on Human Rights (http://human-rights-convention.org), and in the United Kingdom
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by the Data Protection Act (DPA) (http://www.legislation.gov.uk/ukpga/1998/29/contents).
Unification and coordination of privacy laws would facilitate development of systems that
could be used more widely;
Designing interfaces: The growing number of device format factors will require more effort
in the design of user interfaces that can work across devices and languages and for different
age groups. User interfaces for seniors will require more appropriate presentation formats to
make them usable. The World Wide Web Consortium has developed some standards for web
accessibility for seniors under project WAI-AGE Project IST 035015 (http://www.w3.org/WAI/
WAI-AGE/). Additional guidelines are available from the National Institute on Aging (www.nia.
nih.gov). More research and standards will be needed to make systems accessible to seniors;
Family-centered design: Elders need the care and support of their families and communities.
In addition to designing systems that take into account the special issues of elders, systems
also need to incorporate families into their design and use. Among the myriad of challenges
for elders and their families are considerations of governance and control.
CONCLUSIONS
This article has reviewed care-at-a-distance programs that use technologies to reach patients
at home and in underserved regions. Many programs have been shown to result in both
positive patient outcomes and reduction of costs. The majority of the published articles show
the effectiveness of such programs. However, the literature also shows that better-designed,
controlled studies with larger numbers of patients are needed to allow replication of programs
in other regions. Major drivers in the development of this field include new communication
technologies, particularly mobile devices, new interoperability technologies, and growing
evidence on effective implementation. Major challenges include the need to implement
complex privacy and security requirements, data integration, licensing and credentialing, and
reimbursement. Growing populations coupled with a limited number of healthcare providers
pose both a challenge and an opportunity for finding innovative ways to deliver affordable and
effective health care. Continued investments in research and implementation are necessary
to reach scalability of solutions to meet global needs. Measuring outcomes will be key to
providing evidence for the future growth of these coordinated care networks.
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