II. BACKGROUND
A. The United States-Mexico Border Region
The United States-Mexico Border Region has been formally defined
as the area within 100 kilometers of the international boundary between
the United States and Mexico (United States-México Border Health Commission
2003-2005) . Administratively, this encompasses 48 counties
in four U.S. States (California,
Arizona, New Mexico, and
Texas), and in Mexico,
80 municipios in six States (Baja California,
Sonora, Chihuahua,
Coahuila, Nuevo Leon, and Tamaulipas) (see Appendix
A for a map of the border region).
Despite this formal definition, various formulations of the “border
region” continue to exist. For
example, the United States-México Border Health Commission counts
only 44 U.S. counties as part of the border region, and
the United States-Mexico Border Health Initiative of the U.S. Department
of Health and Human Services includes 45 U.S.
counties (the Arizona counties of
La Paz, Maricopa and Pinal
are excluded). These differences
in definition account for some differences in demographic estimates
between different organizations. For
this report, 48 U.S.
counties were included in the region, which corresponds with how each
border State defines its border region.
1. Border Populations
The
border region is nearly 2,000 miles long, with more than 12 million
residents on the U.S. side (see table below) and more than 6 million
residents in 80 municipios on the Mexican side
(United States-México Border Health Commission 2003) .
The border region is usually identified with its major border
cities and 43 points of entry or border crossing sites.
But, while 90 percent of the border population resides in 14
paired, inter-dependent sister cities, 3 out of 4 border counties
were classified as “frontier” in 2000 among the most isolated and
least populated areas of the United States (see page v for the definition
of frontier, and Appendix B
for a list of border counties and those classified as frontier).
Table 1: Border region
population, by race/ethnicity, 2005
| |
Arizona |
California |
New Mexico |
Texas |
Border Region |
| Number of Border
Counties |
7 |
3 |
6 |
32 |
48 |
|
|
|
|
|
|
|
|
Population |
5,062,171 |
4,880,063 |
321,607 |
2,323,880 |
12,587,721 |
|
|
|
|
|
|
|
|
Percent of Population by Race/Ethnicity |
|
|
|
|
|
|
White |
77 |
66 |
81 |
76 |
73 |
|
Black/African American |
3 |
5 |
2 |
1 |
4 |
|
American Indian/Alaska Native |
2 |
1 |
2 |
<1 |
1 |
|
Asian |
2 |
8 |
1 |
1 |
4 |
|
Native Hawaiian/ Pacific Islander |
<1 |
<1 |
<1 |
<1 |
<1 |
|
Another race/ethnicity
|
12 |
16 |
12 |
16 |
15 |
| Hispanic/Latino (any race)
|
31 |
36 |
55 |
86 |
44 |
Data
source: 2005 American Community
Survey, U.S. Census Bureau
A high proportion of the border population is of Hispanic/Latino
ethnicity, ranging from 31 percent in Arizona
to 86 percent in Texas; Hispanic/Latino
populations are the majority ethnic group in the border region of
New Mexico and Texas. In comparison, only 12.5 percent of the U.S. population
in 2000 was of Hispanic/Latino ethnicity.
Yet these statistics reveal little of the diversity among the populations
that inhabit the border region, and each group has distinct and significant
impacts on health planning and services delivery. On the U.S. side of the border, 26 Federally
recognized Native American tribes are located within the border region,
and on the Mexico side, seven indigenous groups are recognized (U.S.
Environmental Protection Agency 2006) . Some of these indigenous groups, for example
the Tohono O'odham Nation of Arizona and Sonora,
straddle the border with members living on both sides. Many U.S. citizens of Mexican or Latino ethnicity reside
on the U.S. side
of the border, yet prefer to obtain health care in Mexico from providers who share their
language and cultural traditions.
The majority of people on either side of the border are permanent
residents; some are binational, crossing the border daily for work,
while others rarely cross the border.
Some residents are temporary, such as international migrants
who typically only spend a few days in the border region. Some border region residents are seasonal, including
migrant agricultural laborers, as well as U.S. “snowbirds” living on both sides
of the border.
Many U.S. retirees
have relocated to Mexico
or reside in the border region during part of the year, and may be
dependent on affordable healthcare services in Mexico. For example, Arizona
attracts many snowbirds who seek medical services across the border
from Yuma. Baja California, Mexico,
and other northern Mexican States have growing populations of American
nationals on fixed incomes who have relocated for economic reasons
(Bach & Kiy 2006) . Despite the fact that many residents of the region
are elderly with significant health care needs, as is typical of most
frontier populations, many border health programs focus on young adults
and children.
2. Public Health Priorities – Healthy Border 2010
The Healthy Border
2010 Program is a binational agenda for health promotion and disease
prevention. Established by the
Border Health Commission in 2003, the framework builds on the Healthy People 2010 program, the Healthy Gente program (United States), and the Indicatores de Resultado (National Health
Indicators, México). The framework
sets 20 objectives for 11 focus areas (For a more detailed list of
Healthy Border 2010 indicators, see Appendix
C):
1.
Access to Health Care – ensure access
to primary care or basic health care services;
2.
Cancer – reduce breast cancer and cervical
cancer mortality;
3.
Diabetes – reduce both the mortality rate
of diabetes and the need for hospitalization;
4.
Environmental Health – improve household
access to sewage disposal and reduce hospital admissions for acute
pesticide poisoning;
5.
HIV/AIDS - reduce the number of cases
of HIV/AIDS;
6.
Immunization and Infectious Diseases –
expand immunization coverage for young children, as well as reduce
the incidence of hepatitis and tuberculosis;
7.
Injury Prevention – reduce mortality from
motor vehicle crashes as well as childhood mortality from injuries;
8.
Maternal, Infant and Child Health – reduce
overall infant mortality as well as infant deaths due to congenital
defects, improve prenatal care and reduce teenage pregnancy rates;
9.
Mental Health – reduce suicide mortality;
10.
Oral Health – improve access to oral health
care; and
11.
Respiratory Diseases – reduce the rate
of hospitalization for asthma.
(United States-México Border Health Commission 2003a) .
The “Hispanic health paradox,” in which Hispanics often
appear healthier than their American counterparts on a number of health
indicators despite lower socioeconomic development status, is largely
the result of lower rates of chronic disease.
U.S. border
residents have lower age adjusted mortality rates (494/100,000) than
the U.S. national rate (560/100,000), while border
residents in Mexico
have higher mortality rates than other Mexican residents (760/100,000
vs. 630/100,000).
B. Access to Health Services
Basic
access to health services in the border region remains one of the
most critical problems. Over 80 percent of U.S. border counties have
Health Professions Shortage Areas (HPSAs) (Bach & Kiy 2006) ,
with border populations having 25 percent fewer primary care physicians
than the general U.S. population.
Residents
of the border States also have the lowest levels of health insurance
coverage, with an estimated 21 percent of the U.S. border population uninsured.
Mexican-Americans have the lowest rates of health insurance
among U.S. population groups (Sullivan 2004) . In 2000, an estimated 14 percent of the U.S. population was uninsured; border
States had much higher rates of uninsurance, ranging from
a low of 18 percent (Arizona) to
a high of 24 percent (New Mexico). Texas
border counties had the highest rates of uninsured populations, with
nearly 1 in 3 residents lacking health insurance; 13 of its 32 border
counties had uninsured populations greater than 30 percent.
Aggregation masked large variations between counties. Among the three California
border counties, Imperial
County had the highest rates of uninsured, but is dwarfed
in the aggregate by the size of San Diego County’s
population. Similarly, Arizona had two large counties (Maricopa, Pima)
below the State average for uninsured; the other five counties had
an uninsured rate of 24 percent.
Figure 1. Data Source: U.S. Census Bureau Small Area Health
Insurance Estimates: Experimental estimates
of health insurance coverage, 2000 (release date: July 2005).
C. Organization of Border Health
Activities
In
addition to the usual array of State and local government health departments,
private providers, and non-profit providers, border health activities
involve a broad spectrum of international, Federal, and regional programs.
In the international arena, the Pan American Health Organization,
U.S. Agency for International Development, and World Health Organization (WHO) work at the border. At the Federal level, the U.S. Department of
Health and Human Services Border Health Initiative is managed by the
HRSA Office of Rural Health Policy.
Each of the four U.S.
border States has a State Office
of Border Health, and some municipalities (e.g. San
Diego) have their own border health initiatives.
United States-México Border Health Commission.
The United States-México Border Health Commission (USMBHC) was formed
as a binational commission in 2000, and designated a Public International
Organization in 2004, to provide the leadership for “coordinated and binational actions that will
improve the health and quality of life on the border” (United States-México
Border Health Commission 2003-2005).
Commission membership consists of 26 members, with 13 members
forming 2 sections, 1 from each country led by a Commissioner, the
Secretary of Health. Other statutory members of the commission are
the chief health officers from the 10 border
States, with the remaining 14 members appointed
by the Federal governments of each nation.
The
functions of the U.S. section of
the USMBHC are identified as:
1.
To conduct a public health needs assessment in the United States-Mexico
border area as well as to conduct or support investigations or studies
designed to identify, study and monitor health problems
2.
To provide financial, technical, and administrative support to assist
the efforts of non-profit, public, and private entities to prevent
and resolve health problems
3.
To conduct or support health promotion and disease prevention activities
in the United States-Mexico border area
4.
To emphasize best practices in public health at the border
5.
To make recommendations that will guide public policy, allocation
of health resources and the development of binational health projects
6.
To establish a comprehensive and coordinated system, which utilizes
advanced technologies for gathering and disseminating health-related
data, and monitoring health problems in the United States-Mexico border
area
7.
To promote cooperation among Federal, State, and local authorities,
communities, private organizations, and others to accomplish the goals
of this Commission
(United
States-Mexico Border Health Commission 2003b)
Binational health councils. The
four border States have established
binational health councils with sister cities and regions in Mexico to address border health issues.
According to the Texas Office of Border Health, the councils “examine
health needs, problems, and available programs with particular attention
and concern to the Council's geographical area, and to consider how
its members can promote appropriate actions by the Council via participatory
activities” (Texas Department of State Health Services 2005a). There
are 12 binational health councils listed by the U.S.-Mexico Border
Health Association, and one additional council recognized by the State
of California:
- Eagle Pass, TX/Piedras Negras,
Mexico/Kickapoo
Nation (Trinational)
- Del
Rio, TX/Ciudad
Acuña, Mexico
- Brownsville,
TX/Matamoros,
Mexico/Cameron,
TX
- San
Diego, CA/Tijuana,
Mexico
- Columbus,
NM/Luna County,
NM/Palomas,
Mexico
- El
Paso, TX/Ciudad
Juarez, Mexico/Las Cruces, NM
- Laredo,
TX/Nuevo
Laredo, Mexico
- Mc
Allen, TX/Reynosa,
Mexico/Condado Hidalgo, TX
- Nogales, AZ/Nogales
(“Ambos Nogales”), Mexico
- Noreste de Sonora, Mexico/Cochise County, AZ
- Presidio,
TX/Ojinaga, Mexico
- Yuma, AZ/San Luis Rio
Colorado, Mexico
- Imperial,
CA/Mexicali, Mexicali (recognized by the State of California)
As the health system in Mexico
has more public medicine (sponsored at the Federal level), and is
more centralized and hierarchical, it is often difficult for U.S. health officers to meet directly with their
Mexican counterparts, who are typically not authorized to communicate
directly with their U.S.
counterparts. The role of binational
councils may vary depending on local needs, but they provide a forum
for public health managers and providers from both countries to speak
with each other and understand each others’ perspectives.
As U.S.
and Mexican public health officers typically do not speak each others’
language, translators play an important role at the meetings.
Institutional barriers to cross-border collaboration.
Some border health experts note that while much attention
is currently being paid to border health issues, few of the problems
are new and they are already well documented.
From an intervention perspective, despite extensive research
there has not been enough action to make a difference.
The International Community Foundation, working in
the San Diego-Baja California border region, cites two major types
of institutional impediments to improving the health of the border
population, and subsequently the health security of all Americans
(Bach & Kiy 2006) . The first is
a failure of leadership to make necessary policy changes to enable
effective action. The second
is the fragmentation of health services and programs that “focus exclusively
on one disease, treatment, or subgroup.”
This fragmentation is self-reproducing in an environment of
chronic shortage of resources and in the absence of leadership for
a more comprehensive, coordinated effort.
In turn, “fragmentation reproduces limited capacity, even when
a program is successful within its own objectives.”
Where programs are funded on the U.S. side, for
example, they may not be funded on the Mexican side of
the border, and U.S. Federal funding agencies may not permit expenditures
on the Mexican side of the border. This undercuts the ability of individuals and
organizations in Mexico
to work with their American colleagues.
In addition, a donor emphasis on “sustainability” may inadvertently
contribute to the demise of once-funded HIT initiatives. The implementation of HIT may increase operational
costs, and if support is made available only for new projects over
the short-term, non-profits will face increasing difficulty raising
funds to sustain ongoing operations.
D.
Information and Communications Technology Infrastructure in the United States
Health information technology remains a vision of the
possible rather than an everyday reality for public health and health
care programs, particularly in remote rural areas.
Compared with other developed nations, the United States lags
behind in the development and deployment of HIT
(The Economist 2005) . One reason is the difference in health systems –
a country with a national health system will face fewer hurdles to
the development and deployment of HIT. It is perhaps not surprising that many are skeptical
of the possibility of a national health information system, given
the characteristics of the U.S.
health care system: a chaotic mix of providers and payers; a blend
of public and private enterprise; tensions between cooperation and
competition in a quasi-market-based health system; layers of administration;
and a mosaic of legal regulations. The United
States also lags behind other developed
nations in the deployment of essential telecommunications infrastructure.
1. Lack of infrastructure on the United States-Mexico
border
Lack of access to essential telecommunications
infrastructure remains a major bottleneck for HIT in many parts of
the United States, as well as in Mexico. Most HIT applications require high-speed Internet
connections, and some require the strength of T1 connections. Yet rural residents are more likely to rely on
slow dial-up connections than their urban counterparts, and many places
lack any service provider. However,
data on the extent of broadband deployment in the United States are
limited and difficult to assess (United States Government Accountability Office 2006)
.
Although a recent national survey of local health departments
showed that only 1 percent lack a computer, 2 percent lack Internet
access, and only 7 percent lack high-speed Internet access, the survey
also shows a consistent pattern of lower access to information and
communication technologies among health departments that serve a population
of less than 25,000 (Leep 2006) . Data on the
populations served by local health departments for the entire border
region are not available. However,
in the 2000 Census, 27 of the 48 U.S.
counties in the border region had populations of less than 25,000. (Some counties have more than one local health
department, and some local health departments in Texas cover more than one county.)
2.
The National Health Information Technology (HIT) Strategy
“Fewer Mistakes,
Lower Costs, Less Hassle, Better Care.” The importance of HIT is summarized in this way by the U.S. Department
of Health and Human Services (U.S. Department of Health and Human Services
2005) . Evidence of
the benefits of health information technology to improve quality of
care, increase efficiency of service delivery, and reduce costs over
time are now well established (RAND Health 2005; Shekelle et al 2006) . HIT also can
increase access to care through applications such as telemedicine. Widespread use of HIT may also improve public
health initiatives through the automated collection and transmission
of data for improved surveillance and monitoring of population health
indicators.
National Health IT Strategy. The vision of
HIT received an important boost in 2004 with the establishment of
the Office of the National Coordinator for Health Information Technology
(ONCHIT) within the U.S. Department of Health and Human Services. The Office provides the leadership for the development
of a national HIT platform and promotes the widespread adoption of
HIT in health care (U.S. Department of Health and Human Services)
. Under the National
Health IT Strategy, various divisions within HHS now coordinate IT
initiatives (see Appendix D
for a list of HHS IT initiatives).
| Table 2: Goals and
Strategies of HHS’s Framework for Strategic Action |
|
Goals |
Strategies |
|
Goal
1: Inform clinical practice with the use of electronic
health records (EHR) |
1. Incentivize EHR
adoption |
|
2. Reduce risk of
EHR investment |
|
3. Promote EHR diffusion
in rural and underserved areas |
|
|
|
| Goal
2: Interconnect clinicians so that they can exchange
health information using advanced and secure electronic communication |
1. Foster regional
collaboration |
|
2. Develop a national
health information network |
|
3. Coordinate Federal
health information systems |
|
|
|
| Goal
3: Personalize care with consumer-based health
records and better information for consumers |
1. Encourage use of
personal health records |
| 2. Enhance informed
consumer choice |
|
3. Promote use of
telehealth systems |
|
|
|
| Goal
4: Improve public health through advanced biosurveillance
methods and streamlined collection of data for quality measurement
and research
|
1. Unify public health
surveillance architectures |
|
2. Streamline quality
and health status monitoring |
| 3. Accelerate research
and dissemination of evidence |
Source: United States Government Accountability Office, 2005
.
In
spite of the ambitious scope of activities, some advocates fear that
important stakeholders are not yet participating in this national
dialogue, including rural and frontier stakeholders.
In order to achieve a system that is truly national and interoperable
in scope, the resulting systems must be acceptable and accessible
to all levels within the system, including those traditionally underserved.
Community
health centers (CHCs) are an important part of the public health safety
net. According to data available from the HRSA data warehouse (Health
Resources and Services Administration, no date), there are 186 Federally-Qualified
Health Centers (FQHCs) in the 48 border counties (FQHCs are a subset
of all CHCs, however no reliable data are available for the entire
border region for CHCs that do not receive Federal funds).
In a review of recent HIT policy initiatives, proposals and
related activities, the Community Clinics Initiative in California
suggests some specific additions to ensure that community health centers
(CHCs) are part of the process:
- Specific
mention of community health clinics in all sections that list providers
(hospitals, physicians, laboratories, etc.)
- Requiring
a safety net representative on the American Health Information Community
(AHIC), a high-level advisory panel appointed by the Secretary of
Health and Human Services
-
Establishing
preferences for the awarding of grants based on designated health
care shortage areas
-
Including
language that ensures that the loan review standards and the repayment
requirement recognize the unique financial structure of CHCs. (SOURCE: DDB Issues & Advocacy 2005 )
It is generally accepted that rural and frontier providers
have less access to HIT than their urban counterparts, in part because
smaller practices and service populations render them unable to achieve
the economies of scale that support the business case for HIT. For example, in a survey of community hospitals
in Georgia, researchers found that urban hospitals had significantly
more functional electronic applications and technical devices in place
than rural hospitals, although some of these differences were attributed
to different scope of services (Culler et al 2006) . An analysis conducted
by RAND found that small size, rural status, and a high share of claims
paid by Medicare / Medicaid contribute to low adoption rates of HIT
(Fonkych & Taylor 2005) . However, the RAND study also found that hospital network membership was
a more important predictor of HIT adoption.
The urban-rural HIT disparity is explained either
as the typical lag involved in the diffusion of innovations from urban
to rural, or a naturalized economic order in a market-based system
(Bower 2005; Helitzer et al 2003) . Proponents of market-based solutions accept this
disparity in the belief that the market can achieve faster change
than planned interventions; others insist that Federal intervention
is the only way to achieve national HIT that is truly comprehensive
(Middleton 2005) .
3.
Public health informatics (PHI)
The Public Health Informatics Institute defines public health informatics
as “the systematic application of information and computer science
and technology to public health practice, research, and learning”
(Public Health Informatics Institute 2005a) . Public health information
systems range from categorical or stand-alone systems (such as a disease
registry) or those linked with other systems from which they extract
data.
Public Health Information Network.
Under the leadership of the
Centers for Disease Control and Prevention (CDC), the Public Health
Information Network (PHIN) was developed “to advance the use of interoperable
information systems” for:
- Detection
and Monitoring of Diseases and Health Threats
- Early
Event Detection
- Outbreak
Management
- Connecting
with Laboratory Systems
- Surveillance
- Communications
and Alerting
- Information
Dissemination and Knowledge Management
- Countermeasure
and Response Administration
The process of developing and implementing HIT / public health informatics
systems fundamentally involves a re-engineering of work processes.
One key lesson is that a clear understanding of these work processes
– both the current and desired reality – is essential to designing
acceptable and well-functioning systems. Participation of all key
stakeholders is essential, both for the design of the system and for
creating a shared commitment to the success of the project.
The Public Health Informatics Institute
and the National Association
of County and City Health Officials (NACCHO) recently completed
a demonstration project that tested a collaborative approach to defining
the business processes of local health departments (LHDs).
Funded by the Robert Wood Johnson Foundation (RWJF), the goal
was to “provide the foundation for developing a base set of detailed
information system requirements that meet the needs of all LHDs” (Public
Health Informatics Institute 2006b) .
The “requirements development methodology” as collaborative
process is designed to create a shared understanding among the different
actors within the system who may not be aware of each others’ roles
or information needs. “Once defined, the business processes would provide
the foundation for developing a base set of detailed information system
requirements that would meet the needs of all LHDs and serve as a
starting point for creating requests for proposals and contracts for
building or buying new information systems. With requirements in hand,
every LHD would not need to re-create the wheel when it comes to defining
their information system needs” (Public Health Informatics Institute
2006b) . Defining common business
processes does not preclude tailoring systems to meet local needs,
but rather provides for a set of common information structures that
will enable improved information exchange with other public health
agencies and the health care system.
The InfoTech Collaborative, also funded by the Robert Wood Johnson
Foundation, will assess, evaluate, and recommend innovative ways to
improve the nation's public health infrastructure in the following
ways:
- use
information technology to effectively collect, analyze, and disseminate
information
- improve
data access and community participation for making public health
decisions
- enhance
the performance of the public health system through the use of information
technology (InfoTech Collaborative no date) .
The
six participating States in this collaborative – Oklahoma,
Kansas, New Hampshire,
South Carolina, Maine,
and Missouri – do not include any
border States. The Collaborative has assembled an online catalog
of public health information systems at http://toolbox.airws.org/.
There are no entries yet from the four border
States.
4.
Health Information Exchange - Where PHI
and HIT Meet
Because
public health informatics is interdependent with clinical HIT initiatives,
its success lies in the ability of public health programs to exchange
information with a multiplicity of health service providers. Organizations
that work to enable the exchange of health data across a variety of
technologies, vendor platforms, and organizational types are referred
to as health information exchanges (HIEs) and regional health information
organizations (RHIOs), among other terms.
HIE applications differ from the clinical and business-oriented
applications of HIT; HIE applications “may include a central Web site,
health care terminology translation tools, a master patient index,
authentication and authorization infrastructure, and applications
to aggregate information from multiple sources” (Arizona Health-e Connection 2006) . (See textbox below).
Ideally,
RHIOs or HIEs, when fully operational, will bring together patient
information from hospitals, physicians, clinics, pharmacies, community
labs, radiology facilities, nursing homes, health plans, and public
health information systems. Many
emerging models of HIE, however, focus on the needs of health care
practitioners and the business of providing health care, without focusing
on population health or other public health concerns (Public Health Informatics Institute 2005b) .
Public
health is an information-intensive field that contributes to and depends
on data from the health care system. It needs to be included in the
development of health information exchanges, to ensure that any systems
developed are responsive to and can benefit from public health data
(Public Health Informatics Institute 2005b). The Robert Wood Johnson Foundation’s current grant program,
InformationLinks, supports the participation of public health agencies in
the development of health information exchanges (Robert Wood Johnson Foundation 2006) .
At this time, most RHIOs or HIEs are urban and hospital-based. Demonstration projects exist for rural areas,
although it is unclear how representative these projects are. For example, one Agency for Healthcare Research
and Quality (AHRQ)-sponsored project was the first to plan and now
to implement a “frontier model” of health information exchange in
Nebraska (AHRQ National Resource Center for Health Information Technology
no date-a; Shank et al 2005; Vogt et al 2005) . HIT grants may include
resources to pay for necessary infrastructure upgrades. Yet this particular frontier region, the Nebraska panhandle, is actually the “most wired” region
of Nebraska;
75 percent of residents have Internet access compared with 66 percent
in other regions of the State. For
other frontier regions, the lesson of this model underscores the fundamental
requirement of essential infrastructure.
Rapid implementation of HIT, especially if financed by various
Federal agencies as well as national and local private foundations,
may result in increasing difficulty coordinating HIT efforts at a
local, regional, or State level. “Partners"
are often competitors, and turf issues erupt and need resolution. For example, in New Mexico, at least two RHIO
initiatives – one funded by CMS and one funded by AHRQ – were initiated
at roughly the same time, with very different business models
(Blair 2005; Gunter 2005) .
Much of the work of information exchange involves the development
of standards, protocols, and vocabularies to enable the exchange of
both data and information with
shared meaning when data are exchanged.
Health Level Seven (HL7), an ANSI-accredited Standards Developing
Organization, focuses on producing standards for clinical and administrative
data in the health care arena (Health Level Seven no date) . The data exchange standards developed by the
organization are also referred to as HL7.
The CDC has adopted HL7 messaging standards, which enable different
information systems to communicate and exchange data, for the Public
Health Information Network.
The importance of the HL7 standard was demonstrated
after Hurricane Katrina, when providers across the United States needed
to access Louisiana’s immunization registry to enroll displaced children
in school (Brewin 2005) . Because the immunization registries in Louisiana and Houston were
both HL7-compliant, two-way information exchange was enabled within
a few days, allowing health care providers at the Houston's
Astrodome to log into the Louisiana
registry and retrieve immunization records.
All HL7-compliant registries were eventually able to perform
two-way data exchanges, while others were able to achieve read-only
access and had to re-enter data into their own system.
The Hurricane Katrina example demonstrates both the benefits and
challenges of health information exchange – the main objective being
to turn stand-alone, local or regional, and “silo” systems into interoperable
networks that overcome the geographical and/or functional limitations
of any one system. These challenges
increase dramatically in the border context, given different languages,
infrastructures, governance, and clinical protocols.
In the next three chapters, examples of HIT applications supporting
three Healthy Border 2010 objectives are described:
immunizations, obesity/diabetes, and tuberculosis.
|
III. TUBERCULOSIS
Among the focal issues discussed in this report, tuberculosis
(TB) prevention and treatment projects have had the most sustained
binational attention. In 2001,
a work group reporting to the CDC identified a number of “converging
factors” resulted in higher TB rates in the border region for both
the United States and Mexico (Lobato et al 2001) . These factors include:
·
Mexico's higher TB rate;
·
Low socioeconomic status
and limited access to health care in the border area;
·
Frequent border crossings
and travel in the United
States for employment, commerce,
health services, and leisure;
·
Language and sociocultural
differences;
·
Lack of coordinated care
across health jurisdictions on both sides of the United States-Mexico
border.
The work group report describes select cooperative tuberculosis
activities along the United States-Mexico Border, including three
Texas-Mexico projects (Project Juntos, Los Dos Laredos, and Grupo
Sin Fronteras); three Arizona-Sonora cross-border projects; the California-Baja
California TB committee; Imperial-Mexicali farmworker projects; CURE-TB,
operated by San Diego County as a binational referral system; TB Net,
an Austin, TX-based migrant support system operated by Migrant Clinician’s
Network (MCN); Ten Against TB; and the United States-Mexico Border
TB Laboratorian Binational Training Project (Lobato et al 2001) .
The work group also reported that “TB control programs along the
border identify locally defined binational cases in their own TB registries,
but none maintains local or statewide electronic records for these
cases,” and that the lack of a unified electronic binational TB registry
was “hampering effective TB prevention and treatment programs.” The report further described various models that
could be explored for such a registry.
A.
The Binational Tuberculosis
Referral and Tracking Project
In 2003, three programs, the Binational Card project, CURE TB, and TB Net, were integrated as the Binational
Tuberculosis Referral and Tracking Project (Laswell 2005). The Binational Card project was piloted in target
sites in the United States
and Mexico
by CURE TB and TB Net, who divided territory so as not to duplicate
efforts. TB Net, based in Austin, TX, covers patients who initiate
treatment in Texas, who move within the United States, and who move
to countries other than Mexico (from Central America to as far away
as China). CURE TB is operated
by the San Diego County Department of Public Health, and covers patients
who move from the United States
to Mexico (except
those from Texas).
In cooperation with Mexico’s
National Tuberculosis Program, patients in either country are registered
in a central database, one in Mexico City
and one in the United States;
the U.S.
database is managed by the CURE TB project.
The Binational Card Project is a collaborative effort between
the CDC and the National Tuberculosis program of Mexico, in partnership with a number
of State, local, and international agencies. The card, given to TB+ patients at participating
sites in Mexico
and the United
States, is designed to ensure completion
of treatment among patients with a planned move out of the jurisdiction
of the initiating care provider, and facilitates access to the referral
network on both sides of the border. Patients receive a portable health record to
carry with them; patients’ names are not on this card but instead
a system of unique identifying numbers are used.
The record displays the 800-number that patients can call to
locate a provider in their new location.
An
evaluation of the Binational Referral System and Card Project conducted
in 2005 showed that despite many successes, prescribed data exchanges
between nations did not occur routinely (Laserson 2005) . Formal protocols for transmission of information
were hierarchical: from local up to national, then between national
programs, and then down to the local level again. This process could be time consuming, face bottlenecks,
and often information was delivered in batches; this time lag meant
that the process was not completed as quickly as the patient moved,
and referral information was sometimes delivered too late to be of
use for patients and providers (Laserson 2006) . Direct communication at the local level between
countries did occur where strong personal connections existed, however,
this level of communication was outside of the program protocol. Necessary modifications are being made to the
data collection and communication and referral systems. The Binational Card project has now moved beyond
the pilot phase and is expanding to new sites.
CURE TB. The CURE TB program is a referral program
for TB patients who move between the United States and Mexico, based
in the TB control program of San Diego County Health and Human Services
Agency (County of San Diego no date) . When a patient is diagnosed with TB and has plans
to move, providers or health departments provide a patient referral
sheet (usually via fax or telephone) to the CURE TB office, along
with details (if known) about where the patient is moving.
CURE TB staff may contact the patient to clarify the location,
as well as provide the patient with information on where to go for
services. Patients can call toll-free numbers in both the
United States and
Mexico for assistance
or if their plans change. CURE
TB will transmit patient information to the Ministry of Health in
Mexico and will follow up with providers in Mexico as well.
CURE TB staff are primarily Mexican MDs who are bilingual and
familiar with both countries’ health systems.
The project is “low tech,” using an over-the-phone case management
system to assist and motivate patients, monitor patient treatment,
and document outcomes, primarily utilizing telephone and fax communications (Stop
TB Partnership) . This presents some difficulty in communicating
with health authorities and providers in Mexico, as most
fax lines are shared with telephone lines, necessitating multiple
calls to send a single fax. It
can be difficult for contacts in Mexico to return calls, as many do
not have access to international telephone lines (Moser 2006) . The project is finding that, as in many parts
of the world, Mexico
is “leapfrogging” over old technology to new, and email is increasingly
used as a more reliable mode of communication with Mexico.
At the CURE TB office, patient data is stored in an Access database.
The database is in the process of being migrated to and integrated
with a new county electronic TB registry.
Ideally, the program would like to be able to simultaneously
transmit patient information to the National TB Program in Mexico
City and to local providers.
At this time, however, the program does not have the IT expertise
or financial resources to develop new information and communication
technology (ICT) applications (Moser 2006).
TB Net
and the MCN Health Network. TB
Net is a Binational Tuberculosis
Referral and Tracking Project operated by the Migrant Clinician’s
Network (MCN), currently with 57 participating clinics in 17 States
in the United States and Mexico (Migrant Clinicians Network 2006c;
no date) (Migrant Clinicians Network 2006b). A potentially mobile patient who tests positive
can have all treatment records centralized and accessible to clinicians
to improve continuity of care and successful completion of treatment.
Here, a mobile patient is “one who moves regularly for work
(such as migrant/seasonal farm workers), one whose employment status
is marginal (increasing the likelihood of mobility), or one who receives
medical care and/or lives on both sides of the U.S.-Mexico border.”
TB Net also helps providers on each side of the border understand
each other’s treatment protocols. Providers
call TB Net to update the registry.
TB
Net has recently been integrated with three other MCN tracking programs
under the MCN Health Network (Migrant Clinicians Network 2006a) . Previously, the only automation occurred at the
central database level; communications were paper-based, by telephone,
or by email. The program is
moving toward the provision of more electronic services.
Patients will now receive a single ID card for all four Network
programs with a unique identifying number, and a signature panel to
designate a single first and last name for consistent usage (many
Hispanic patients have several first names and at least two last names,
creating confusion for clinic staff). Patients must choose a PIN number
which providers will use to access their medical records, and will
facilitate future electronic transmission of records.
B.
Grupo Sin Fronteras
Grupo Sin Fronteras is a binational tuberculosis project (Brownsville
/ Matamoros and McAllen / Reynosa) representing cooperation between
the States of Texas and Tamaulipas (Texas Department of State Health
Services 2005b) . Funded with
a grant from the CDC, the project also works with the Texas State
Public Health laboratories to provide testing services for Mexican
patients; results are reported to both Texas and Mexican public health
authorities (Association of Public Health Laboratories 2004) .
C.
National TB Surveillance
Program
At the national level, the CDC collects data from all health jurisdictions
in the United States
on TB cases for its National TB Surveillance program.
Since 1993, the CDC has operated the Tuberculosis Information
Management System (TIMS). All TB reporting jurisdictions in the United States
reported TB cases to the CDC using TIMS.
TIMS also included extensive patient management functions,
however, few made use of these functions, even though the software
was supplied by the CDC. Instead,
some State and local programs developed their own patient management
systems, ranging from focused applications such as contact investigation
to comprehensive patient management applications. However, “Even today,
many local and state programs lack any information system capability
to support patient management activities” (Banerji 2003).
Now, the CDC is in the process of developing interoperable and integrated
systems based on new public health information standards: the Public
Health Information Network and the National Electronic Disease Surveillance
System (NEDSS) (Baptiste 2005) . The national TB surveillance program will be
integrated into these other systems; TIMS is being replaced by a new
TB Surveillance Program Area Module (TB PAM) of NEDSS. The TB module is being designed so that it can
be used as part of the larger system but also as a stand-alone module.
Another project sponsored by the CDC, the TB Patient Management
Project, sought to address the need for TB patient management systems
in a way that recognized variations in local systems and patient management,
rather then develop another “one size fits all” application that few
would use (Banerji 2003) . It had two goals:
- Document
the functional requirements and identify core TB patient management
practices and program evaluation activities across programs.
- Use
this information to develop evaluation criteria to assess and evaluate
various existing information system options.
The result of the project is the Tuberculosis Patient Management Applications Assessment Guide. The
Guide is hosted online by the InfoTech project and
includes criteria to help users determine whether a particular application
meets PHIN standards for compatibility (InfoTech Collaborative no date; National Tuberculosis Controller's
Association 2005) . The guide “is
intended to help programs procure a patient management system that
meets local needs while ensuring compliance with surveillance reporting”
(Banerji 2006).
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IV. IMMUNIZATIONS
According
to the CDC, one-fifth of all children have been seen by more than one doctor
by the age of 2 (Centers for Disease Control and Prevention 2005a) .
When medical records are scattered, clinicians may not know which
immunizations are needed by the children they see. This increases the likelihood
of both under- and over-vaccination. It
also makes it more difficult for immunization outreach programs to target
their interventions and resources. One study estimated that scattered records
in the United States resulted in over 150,000 completely vaccinated children
being misclassified as needing vaccination (Stokley et al 2001) .
Immunization
registries are one tool to consolidate records for improved information
management and are usually organized at the State level.
Electronic registries with additional functionality are referred
to as immunization information systems. An
immunization information system (IIS) can assist in clinical decision-making
and automatically remind parents of their child’s immunization schedule.
These systems can also provide a central source of immunization information
for research and vital statistics needs, as well as for local officials
who are required to collect immunization information in schools, day care
centers, and camps. An immunization information system may be one component
of a more comprehensive Child Health Information System (CHIS), and is often
the first module developed and implemented on the road to a CHIS (Saarlas
et al 2004). Immunization information systems have most commonly
been developed at the State level, through two main programs: the All Kids
Count program, sponsored by the Robert Wood Johnson Foundation, and the
National Immunization Program of the CDC (Freeman & DeFriese 2003) .
It
is estimated that 48 percent of children under the age of 6 were enrolled
in an immunization information system in the United States
in 2004. While the benefits of immunization
registries may be obvious, actual participation in registries remains low,
particularly among private providers (Clark et al 2006) . In a survey of private providers, the most common
barrier to participation is a perception of a cost to the practice, both
in terms of the technology and in terms of staff time. The most frequently reported impetus to participation
was the need to consolidate records across multiple sites of a single provider
/ organization; the second most important reason was a State mandate.
A. Arizona
Arizona is among the 10 States who had achieved the national
health objective of greater than 95 percent of children greater than age 6 enrolled in an immunization
information system (Centers for Disease Control and Prevention 2005b)
. Reporting to Arizona’s
State registry is mandated by law; the system is flexible enough to enable
paper, Web, and data-exchange reporting (Arizona Department of Health Services 2006).
Organizations that have developed HIE capacity, including the Indian
Health Service and some managed care organizations, can connect to the Arizona
State Immunization Information System using HL7 standards to exchange data.
B. California
In contrast with Arizona, California ranks near the bottom
of the States in terms of proportion of children in registries (California Statewide Immunization Registry System 2005)
. California’s statewide immunization registry
initiative involves the support of nine regional and two county registries
and the planned development of a statewide HIE that is interoperable with
the regional registries. In the border
region, the San Diego Regional Registry is a Web-based system requiring
high-speed Internet access that serves only San Diego County. Riverside County uses an immunization information
system called VaxTrack with all of the public health and community clinics
and more than 120 private practices participating (Riverside County Department of Public Health 2000).
Imperial County is the only California
border county classified as frontier. The
county has its own Web-based immunization registry that is currently utilized
by public health departments, community clinics, and some private physicians
(Binggeli & Vargas 2006) . The immunization registry
is one module of a comprehensive public health information management system
(PHIMS) that was developed by the county. At this time, the county IIS
cannot exchange data with the State IIS.
An estimated 40 percent of the county’s immunization providers
are “active users”; another 30 percent have used the system but do not do
so on a regular basis (Binggeli & Vargas 2006).
The remaining 30 percent are largely small private practitioners,
many of whom lack a high-speed Internet connection.
Although most areas have a high-speed Internet service provider,
the service is costly, and many continue to use a dial-up service that is
too slow to effectively use the IIS. Providers
who do not use the Web-based system continue to submit paper reports.
On a read-only basis, all public schools can access a school immunization
card. The county is currently working
on connecting Head Start and childcare centers.
Imperial
County Health Information Exchange
Over 5 years, the Imperial
County Health Information Exchange developed in partnership between the
Imperial County Public Health Department, Advanced Business Software (ABS),
local pediatricians, Clinicas de Salud Del Pueblo Community Clinic Network,
the Department of Health Services Lead Branch, and the Reference Lab (Quest
Lab). Based on this experience, the partners identified three key challenges
to the development of a health information exchange:
• Lack of trust,
buy-in, and understanding: Existing collaborative partners and/or potential
new partners may perceive conflicting missions between public health, providers,
and other agencies. They may perceive that the system doesn’t serve
its purpose, support workflow, inform, or improve community status.
• Lack of partner
resources/capacity: Collaborative partners may not have necessary resources,
such as adequate staff or adequate technology capabilities, i.e., no/inadequate
computers systems, dial-up and slow Internet connection.
• Inability to
obtain long-term funding: Scarce resources in a small county may make it
difficult to maintain the system.
SOURCE: Public Health Informatics Institute 2006a.
Imperial County is a
current grantee of the RWJF InformationLinks
program that supports the development and implementation of health information
exchanges (Public Health Informatics Institute 2006a).
Imperial’s HIE project is focused on improving information exchange
at the community level. The project
focuses on developing data exchange applications for communicable disease,
laboratory result reporting, immunization registry, access to health care
and HIV/AIDS. Imperial
County shares a border with Yuma County, Arizona, and
is currently in talks with the Arizona
State immunization
registry to develop an exchange.
C. New Mexico
After
a decade of discussion, New Mexico’s statewide immunization registry, NMSIIS,
is completing its pilot test and is set to “go live” this year (New Mexico
Department of Health, no date). New
Mexico adopted its Internet-based system from the
Wisconsin Immunization Registry, now available as public domain software. CMS is funding the hardware and ongoing support
for the project (Scientific Technologies Corporation 2005). When fully operational, immunization providers
will have three options to report to the NMSIIS: electronic data transfer, direct data entry through
the Internet, or submission of a scannable paper form.
A
key barrier to full participation, particularly of private providers, is
that the development of the HIE – the technology to transfer data from practice
information systems to the NMSIIS – will not be sponsored by the New Mexico
Department of Health, leaving the costs to be borne by providers (Blair
2005; Lovelace Clinic Foundation 2005)
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V. DIABETES
IT tools to assist in the management of patients
with chronic disease range from comprehensive applications such as
electronic medical records (EMRs), to chronic disease management modules,
to disease-specific registries.
Chronic disease management systems (CDMS) are dedicated
modules with more intensive patient management tools than are found
in a generic patient management system. CDMS can also be developed
to coordinate care for patients with multiple chronic diseases, such
as diabetes, asthma, and depression.
Although EMRs and CDMS offer many similar functions, one survey
found that potential users rated CDMS higher than EMRs in their ability
to support chronic disease management (Jantos & Holmes 2006). Of course, EMRs provide functionality beyond
the management of chronic disease.
Disease registries are different from CDMS in that they focus
on tracking cases of a disease in a population.
Some registries blend population information functions with
patient care functions and may be referred to as CDMS (Skinner et
al 2006).
According to one report on the use of CDMS in rural health care,
applications are readily available to rural clinics and able to be
used and maintained with minimal expenditures (Skinner et al 2006). For example, the Washington State Diabetes Prevention
and Control Program first developed a diabetes registry and later
a more comprehensive CDMS; both modules are available for free and
work on basic PCs with Microsoft software.
Federally Qualified Health Centers (FQHCs) that participate
in the National Health Disparities Collaborative have free access
to a Patient Electronic Care System (PECS), modeled on a CDMS.
Registries need not be expensive; one proponent describes the
development of a diabetes registry using Microsoft Access or Excel,
and offers a downloadable Excel database design (Ortiz 2006).
However, one border health project that worked with five community
health centers in Arizona and Texas to improve clinical adherence
to national diabetes guidelines reported that all of the CHCs in the
study used paper-based records (Schachter & Cohen 2005) . Many diabetes projects in the border region have
focused on community-based interventions (see for example Cohen &
Ingram 2005) . The patient self-care model emphasizes education,
and information technology has supported health education efforts
by supplying access to health information for community members, through
electronic information kiosks, for example.
“Rural clinics are beginning to feel increasing pressure to
implement some type of electronic disease management system. Successful
implementation, use, and sustainability of simple CDMSs have helped
introduce technology into small rural clinics and have positively
impacted chronic disease management programs” (Skinner et al
2006).
Migrant Clinicians Network – Diabetes Track
II. One program of the Migrant
Clinician’s Network (MCN) Health Network project (described above
with TBNet) is the diabetes program that “is designed to track mobile
individuals with diabetes to encourage continuity of care with the
transfer of vital health information between clinics, assistance to
finding and accessing services, and support as they implement their
treatment plan” (Migrant Clinicians Network 2006d) . Track II is one component of the MCN Diabetes
program. Track II maintains
a database of a patient’s diabetes medical record that can be accessed
by providers. The program also provides guidance to providers
on the comparative availability of diabetes medications in the United States and Mexico, as well as price comparisons.
The
MCN Diabetes Program also provides a number of resources for both
patients and providers. A Diabetes
Moving Pack is distributed to patients through providers.
The materials are in English and Spanish, at a basic reading
level. A clinic directory, key chain, and a flyer entitled “Living
with Diabetes” from the Texas Department of Health are included; providers
are encouraged to personalize the packs for patients and add items
relevant to specific patients.
VI. DISCUSSION
AND CONCLUSIONS
As stated earlier, this report is being written during the early
phases of the development of HIT, especially along the United States-Mexico
border. In many ways it is a snapshot of the baseline as of 2006.
Large scale experiments with the alphabet of health information systems,
HIT, PHI, and HIE to name a few, have only recently begun operations
and appear to be diffusing to frontier regions last – with some notable
exceptions. The slow dissemination has numerous causes including infrastructure,
financial, social, and cultural reasons. Many frontier providers are
not at the forefront of technology and systems development, and many
feel left out of the ongoing collaborative initiatives that will result
in a national HIT architecture.
“Another related challenge is Arizona’s geographic
diversity. Each region has its own opportunities and challenges. For
example, some rural areas of Arizona are fairly isolated without bandwidth
to take advantage of many of today’s technologies. Some consumers
live on the borders of other states and receive medical services in
those states. Also, some communities, such as Yuma, have close relationships
with the medical communities in Mexico.” (Arizona Health-e Connection
2006).
Yet clearly, the border context has influenced the adoption of HIT
/ PHI in a number of ways. In
terms of HIT more generally deployed within health services, it is
not surprising that HIT lags in the border region compared with more
affluent, urbanized areas of the United
States.
However, this generalization does not adequately describe a
varied and dynamic region. The
urban areas along the border are dynamic and well connected – particularly
San Diego, California and Yuma, Arizona – and compare favorably with
other parts of the country. A recent focus on biosecurity has also helped
fund innovation in disease surveillance along the border. And finally, national and international focus
on health concerns relevant to border populations has promoted local
and regional innovations mixing paper-based and computer-based technologies.
The following discussion will address issues that constrain PHI
in the border region or require innovations specific to the region.
A. Infrastructure Issues
Broadband access remains a bottleneck. In spite of significant gains in broadband
deployment in rural and frontier areas, the benefits of HIT / PHI
will remain out of reach for those who lack access to essential ICT
infrastructure. In frontier
communities, factors such as low population densities, long distances,
extreme topography, and limited financial resources combine to discourage
market-based development of ICT. IT leadership and State-based or
quasi-public initiatives can succeed where the market fails, however.
The Texas Association of Community Health Centers developed its
wide area network using funds from the Telecommunications Infrastructure
Fund Board (Texas Association of Community Health Centers no date).
The funding was used to purchase computers, network consulting
services, and videoconferencing and telemedicine equipment for community
health centers. Over 100 sites were also equipped with broadband
access. The association continues
to support the network by providing Internet access, email accounts,
teleconferencing, and technical support.
Frontier economics: higher capital costs, lower financial gains. Because of the many situations where market
failures are a barrier to HIT adoption (Middleton 2005), the need
for State intervention at many levels is recognized.
Yet the barriers are exacerbated by the frontier context. As with basic ICT infrastructure, the frontier
context negatively influences the “business case” for HIT. Rural practitioners and care delivery organizations
may find that they will not experience financial gains to offset the
costs of HIT, and local financial resources are insufficient to fund
HIT.
In
general, the cost gains of HIT accrue “upstream” to payers, not to
providers who are expected to invest in HIT.
This imbalance is widely recognized as a major impediment to
the diffusion of HIT. In the case of CHCs, few financial rewards would
accrue to the centers themselves; according to Fiscella and Geiger,
“compared with most practices, CHCs will realize relatively little
return on their HIT investments” and savings would accrue to the U.S.
Department of Health and Human Services (Fiscella & Geiger 2006).
“Failure
to provide a dedicated funding stream for HIT at health centers will
only widen the digital divide between safety net providers and other
providers, thus hampering health centers’ ability to further
reduce health care disparities” (National Association of Community
Health Centers, Inc. 2006).
Need for financial and technical assistance – on both sides of the border.
Funding for frontier providers must accompany any HIT mandates.
Implementation of HIT / PHI on the border will require funds
and technical assistance for both the deployment of basic ICT infrastructure
and the implementation of HIT / PHI technologies and applications. In the cross-border context, however, the full
benefits of these investments cannot be realized if Mexican partner
organizations lack the capacity to collaborate and exchange information. Given the realities of binational interdependencies,
such assistance is required on both sides of the border, and policy
barriers to the expenditure of funds across the border should be re-examined.
Health service providers. One of the “lessons learned” from the Hurricane
Katrina Health e-Initiative was that, by limiting the electronic access
of patient medical and pharmacy records to physicians and pharmacists,
the service was not utilized to its fullest potential.
Midlevel practitioners (nurse practitioners, physician assistants)
were not authorized to access prescription information, hampering
their role as both primary care providers and physician extenders
(Markle Foundation et al 2006).
As frontier communities rely heavily on mid-level providers,
this lesson for disaster preparedness also applies to frontier and
border health IT initiatives.
Rapid change in the HIT environment. In
some cases, the decision to implement a system was delayed due to
the expectation of better tools and new requirements in the near future.
For example, one respondent cited by Skinner et al. reported
not installing a local CDMS in new clinics because of the expectation
that CMS will be releasing a better product in the near future
(Skinner et al 2006).
B.
Undocumented Immigrants
Because of their particular social, political, economic,
and cultural circumstances, undocumented immigrants may interact differently
with health services than other populations. As a significant subpopulation in the border
region, this has important impacts on both the acceptability and the
efficacy of HIT / PHI applications.
Fear of detention and deportation can contribute to
distrust of the health care system, and this fear may be exacerbated
by the use of computerized information systems.
For some, the fear may be a sufficient deterrent to avoid seeking
necessary care. While HIPAA
has greatly improved privacy standards and health data security, use
of health records for law enforcement purposes is permitted.
And incidents, such as when Immigration and Customs Enforcement
(ICE) agents posed as OSHA trainers to snare 48 undocumented immigrants
in 2005, will only increase distrust and reluctance to seek care
(Migrant Clinicians Network 2005).
As noted by the American
College of Occupational and Environmental
Medicine,
Raising suspicion among them
of the potential for identification and deportation as a result of
trying to learn how to do their job safely or how to prevent the spread
of serious communicable diseases such as drug-resistant TB (widespread
in their ranks) can only lead to additional pain and suffering as
well as the increased costs to society for their health care for such
injuries and illnesses. (American College of Occupational and Environmental
Medicine 2005)
When they do seek care, undocumented immigrants often
prefer to conceal their identity, and frequently provide false names
and addresses to health care providers.
As one of the main benefits of HIT and PHI is to link disparate
records and create accurate histories and registries, false or unreliable
data from undocumented immigrants can detract from data quality and
the efficacy of the entire system.
The CURE-TB Project has not encountered any problems
regarding immigration status with their members (Moser 2006). When
patients phone the project hotline, trained providers respond to their
concerns. When the patients
feel comfortable with the system, they are very interested in using
the system to complete their treatment.
As is often noted, HIT / PHI cannot solve the many
problems of our health care system, but these problems can and will
undermine the anticipated benefits of HIT / PHI initiatives.
C.
Mobile Populations and the Limitation of Local / Regional Approaches
Local and regional initiatives to develop interoperable HIT systems
are important steps on the way to a national health information system
and may provide important benefits to residents. In the border region, however, the high proportion
of mobile populations can affect their data. Incomplete records result when care is obtained
outside of the regional exchange. Data derived from an RHIO may reflect
a population that is no longer within the region or conversely fail
to reflect the resident population.
Exacerbating the data problem is the generally poor quality
of population estimates for non-permanent residents, seasonal residents,
and transient populations.
From a border health management perspective, the region of interest
is the border region, yet an RHIO encompassing the entire border region
– across State and national boundaries – is a long way off. Tuberculosis
projects are the closest to developing a regional information system,
but HIT / PHI initiatives remain fragmented by multiple health jurisdictions
and the relative infancy of health information exchanges.
High rates of uninsured populations, as well as lack of reimbursement
for technology-based services, represent a barrier to the advancement
of HIT in the border region in at least four ways:
·
The uninsured,
when they seek care, are most likely to seek care from an emergency
room rather than appropriate preventive services.
·
The uninsured
are less likely to use available services; insufficient volume of
specialist service (already a problem in frontier regions) make even
telemedicine applications unsustainable (Alverson et al 2004) .
·
The burden
of uncompensated care in the border region not only reduces financial
resources available to invest in HIT, but threatens the entire healthcare
safety net (MGT of America 2002; Sullivan 2004).
·
Development
of insurance coverage schemes of technology-based services is widely
viewed as an essential step in the promotion of HIT, as an uncompensated
innovation is unlikely to be adopted (Shortliffe 2005) .
Among those who are Medicaid and Medicare eligible, the lack of portability
of benefits between States (Medicaid) or to Mexico (Medicare and Medicaid)
effectively renders many beneficiaries without insurance (Eldridge 2002; Warner & Jahnke 2001).
Retirees in Mexico
either go without services or return to the United
States for covered – but costlier
– care. Seasonal
migrants face barriers to accessing health services outside their
State of Medicaid registration,
and may end up using the emergency room.
Portability of benefits would improve the use of appropriate
care and enable the use of lower cost services in Mexico.
D. Unmet Needs, Potential Applications
The “connectivity conundrum” and public health. Access to appropriate health services remains
difficult in the frontier and border contexts. Lack of primary care providers, as well as specialist
care within a reasonable travel distance, continue to characterize
the frontier. Residents of the
frontier could potentially benefit greatly from various HIT applications. Yet given the relatively poor ICT infrastructure,
the lack of financial resources, and the lesser deployment of HIT
in rural and frontier communities, they are the least likely to benefit.
This is the “connectivity conundrum” – those most likely to
benefit from ICT are the least likely to have access to it.
Thus the digital divide has a role in maintaining or increasing
health disparities.
Telehomecare. Many believe
that HIT / PHI has an important role to play in reducing health disparities,
particularly for rural residents, through applications including telehomecare
(Chang et al 2004) . For the management of chronic diseases like diabetes
that require monitoring and follow up care, home-based telemedicine
applications could significantly reduce the burden of distance for
frontier patients and improve the quality of monitoring and follow
up care. Innovations such as the IDEATel Project’s home-based
diabetes monitoring units were designed to work over ordinary telephone
lines, in English and Spanish, and could be adapted to work with a
variety of telecommunication systems (Starren et al 2002) (IDEATel
2006) . Although tested in urban and rural New York, the “electronic
house call” could significantly improve access to and quality of care
for diabetic patients in the frontier.
Personal health records. Most
of the key informants spontaneously mentioned the need for some kind
of portable, personal health record.
Given the time required to implement a fully integrated, interoperable
health information system, the difficulties with cross-border information
exchange, and the reality that many patients obtain care in more than
one health jurisdiction, many feel that a portable personal medical
record is one way to empower consumers with their own health information
and improve quality of care right now.
For example, many residents of Imperial County reportedly prefer
to obtain health services in Mexico, but cannot currently access their
own health records (Binggeli & Vargas 2006) . A portable, personal health record (PHR) would
support the choice of residents of one geographic health authority
to go elsewhere for care, as well as enable the chosen provider to
provide better quality of care.
The binational health card is one example of a portable medical record,
but is program-specific. Also,
such records can be lost or destroyed and exist alongside electronic
systems. Electronic PHRs can be provider or patient owned
and controlled. The Community
Hospital of Anaconda, Montana, aims to be the Nation’s “first rural
online health record-keeping initiative” (California Healthcare Foundation 2006a) , where patients’ health records will be available
to them online. In a provider-
or institution-based PHR, data are entered and updated by physicians
and stored electronically in one place.
Patients will receive cards that will enable them to access
secure records on the Internet and share data with other physicians
and family members.
Other personal health records are created and controlled by the patient
rather than a physician. Patient-owned
personal health records allow patients to manage their own information
and are not limited to the input of a single provider or health system
(Gearon 2005). Several
options exist to individuals, ranging from the largest (WebMD) to
smaller firms (FollowMe, CapMed, Vital Vault, and Laxor).
Patients enter medical conditions, treatments, allergies, and
test results; PHRs can also be used to set up appointment reminders,
as well as provide access to health information.
Some PHRs allow members to store digitized documents (e.g.
x-rays). Some are Web-based, others use storage devices
like CDs and flash drives to store information. Costs to the patient may include an annual subscription
fee as well as costs related to Internet/computer access and producing
the medical record itself.
One of the pioneers in PHRs, Follow Me, is a Web-based PHR launched in
2000. A customized bilingual
version of the PHR, VIA, has been developed for migrant health workers,
offered through Vineyard Worker Services, www.vwvia.org
(Steakley 2002). The
PHR is offered free to farm workers who come to Sonoma Valley
and includes a printable emergency medical card, a secure Web-based
PHR, and an email account. An
early review of the program by the Connecting for Health Collaborative
indicates that successful use of the PHR does not require a high level
of IT capacity or expertise, and that “While the program is still
evolving, the simple technology required for this practice could allow
it to flourish in many settings” (Connecting for Health 2003).
While PHRs may be a way forward for mobile populations, there is no guarantee
that providers will accept them. Some
physician offices continue to lack PCs, and Web-based PHRs cannot
be accessed without Internet connectivity.
Some providers simply have an aversion to the technology, and
others may not trust the content of a PHR, even though they rely on
verbal histories provided by the patient (Gearon 2005). A
third model envisioned is an integrated EHR-PHR, where personal health
records can exchange data with provider or facility-based EHRs. From a provider perspective, this is the preferred
model, as “all the advantages of PHRs for providers depend on the
PHR being integrated with the provider’s EHR” (Tang 2006). Yet this is the most complex model, with the
primary barrier being the lack of widespread EHR usage.
Public domain systems. The move toward increasing the availability of public
domain systems will make HIT / PHI more affordable to clinics and
programs with limited resources, as well as more standardized across
systems. Examples range from comprehensive systems to stand-alone
modules. The code of the widely-lauded VA patient management
system, VistA, is in the public domain and is being transformed by
the open source movement into OpenVistA; it is also being developed
as a customized product from vendors (Goulde et al 2006).
The Centers for Medicare and Medicaid Services is working on
a repackaged version, VistA-Office EHR, designed for small physician
offices. VistA formed the basis of the Indian Health Service’s
Resource and Patient Management System (RPMS), which in turn contributed
modules back to VistA. It has also been adopted by Mexico and other
countries for use in its public healthcare systems, as well as some
State and local health systems in the United States (California Healthcare
Foundation 2006b).
Dedicated modules are also available in the public domain. A number of systems available for free have been
described in this report, such as the Wisconsin Immunization Registry.
A recent assessment of the use of chronic disease management systems
(CDMS) in rural health care concluded that such technology is available
and being implemented in rural clinics; a key benefit is that the
“use of a standardized system in a collaborative helps provide data
comparisons and share costs involved with technical assistance services
across the group” (Skinner et al 2006).
The increasing availability of public domain modules and systems
promises to transform the economics of public health information technology,
for the benefit of all.
E. Conclusions
Recognizing that information technology relies on agreed-upon standards,
structures, and vocabularies helps explain, in part, why it has been
difficult for public health agencies to make greater advances in the
use of HIT and PHI. The diversity
in the organization, financing, and management of public health agencies
reduces the possibility of achieving economies of scale (for example,
adopting off-the-shelf, public domain applications).
It also increases the technological challenge of achieving
interoperability, as well as meaningful information exchange (as opposed
to data sharing). This underscores the importance of initiatives such
as those undertaken by NACCHO and the Public Health Informatics Institute
to define the business processes of local health departments.
The binational challenges of public health at the border only increase
the complexity of HIT in border health applications. The adoption of the VistA system for use in government
hospitals by Mexico
suggests a possible future strategy to achieve interoperability with
Mexican providers at the border. Adoption
of VistA-based systems on the U.S.
side of the border may enable improved cross-border data sharing in
the future.
Although there are many challenges in implementing HIT in the border region,
the diversity of the region also translates into diversity in experience
with HIT. There were as many
positive examples of HIT implementation as there were obstacles to
its adoption. In many ways,
the challenges are the same as anywhere else in the country.
And some border communities fulfill a leadership role in HIT
/ PHI. For example, Imperial County’s TB Module has
been ranked by the CDC as one of the top PHIN-compliant modules in
the country, based on technical requirements, core business functionality,
and usability (Binggeli & Vargas 2006) . Informants
of Imperial
County reported “no special challenges”
beyond the usual rural constraints and the typical issues associated
with the adoption of HIT.
Frontier stakeholders need to be part of the national dialog on the development
of standards for HIT, PHI, and health information exchange. Involving frontier stakeholders is in itself
a challenge. For a frontier
resident to participate in meetings at a statewide or even local level
usually involves long travel times.
As one informant stated, it “it is impossible to overestimate
the amount of time we spend in our cars, even to organize a county-wide
meeting.” In spite of the logistical challenges, frontier stakeholders
must be “at the table” to achieve the goal of a functional national
health information system and to transform public health in the frontier.
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LIST
OF ACRONYMS
AHRQ Agency for Healthcare
Research and Quality
ANSI American National
Standards Institute
ASTM ASTM International, originally American Society for Testing and Materials
CDC Centers for Disease
Control and Prevention
CDMS Chronic Disease
Management System
CDO Care Delivery
Organization
CHIS Child Health
Information System
EHR Electronic Health
Record
EMR Electronic Medical
Record
FQHC Federally Qualified
Health
Center
HIE
Health Information Exchange
HIS Health Information
System
HIT Health Information
Technology
HIMS Health Information
Management System
HL7 Health Level
Seven (a standard for health information exchange)
ICT Information and
Communication Technology
IIS Immunization Information System
IOM Institute of
Medicine
MCN Migrant Clinicians’
Network
NACCHO National Association
of City and County
Health Officials
NEDSS National Electronic
Disease Surveillance System
PHI Public Health
Informatics
PHIN Public Health
Information Network (CDC)
PHR Personal Health
Records
RWJF Robert Wood Johnson
Foundation
TIMS Tuberculosis
Information Management System
USMBHC The U.S.-México
Border Health Commission
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![Text Box: Electronic Medical Records (EMR) and Electronic Health Records (EHR):
What's the Difference?
Excerpted from Garets, D. and M. Davis (2005). Electronic patient records: EMRs and EHRs. Healthcare Informatics Online: http://www.healthcare-nformatics.com/issues/2005/10/garets.htm
EMRs are computerized legal clinical records created in [care delivery organizations] CDOs, such as hospitals and physician offices. EHRs represent the ability to easily share medical information among stakeholders and to allow it to follow the patient through various modalities of care from different CDOs. Stakeholders in this context are consumers, healthcare providers, employers and payers, including the government. Because our organization focuses on researching healthcare IT and must be clear in questions to healthcare providers, we've established the following definitions:
EMR: An application environment composed of the clinical data repository (CDR), clinical decision support system (CDSS), controlled medical vocabulary (CMV), computerized provider order entry (CPOE), pharmacy and clinical documentation applications. The patient's electronic record is supported across inpatient and outpatient environments; is used by healthcare practitioners to document, monitor and manage care delivery within the CDO; and is owned by the CDO. The data in the EMR is the legal record of what happened to the patient during encounters at the CDO.
EHR: A subset of each CDO's EMR, presently assumed to include summaries, such as ASTM's Continuity of Care Record (CCR) and HL7's Care Record Summary (CRS), and possibly information from pharmacy benefit management firms, reference labs and other organizations about the health status of patients in the community. It contains patient input and access spanning episodes of care across multiple CDOs within a community, region, or state (or in some countries, the entire country). The patient controls access to information. In the United States, EHRs will ride on the proposed National Health Information Network (NHIN).](image013.gif)
