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Information for Health: A Strategy for Building the
National Health Information Infrastructure
Report and Recommendations From the National Committee on Vital and Health Statistics
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2. THE NHII VISION IN BRIEF
Definition and Key Elements
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Avoiding adverse events:
Concerned about his persistent cough,
Mr. A. visits his doctor, Dr. Z. At the
end of the visit, Dr. Z. advises Mr. A.
that she will transmit an electronic
prescription to the pharmacy. Dr. Z.
enters the medication choice in Mr. A. 's
electronic medical record, which is
integrated with a prescription alert
system, and receives a warning that,
after taking this same medication, some
patients with similar health conditions
have experienced adverse effects, such
as a rash and muscle cramps. Dr. Z.
substitutes a different medication that
is equally effective, which Mr. A. can
take without incident. Dr. Z's clinical
practice management system also has
received a general alert from the drug
manufacturer to avoid prescribing Dr.
Z's first medication choice to patients
with certain health conditions. The
system automatically reviews all
patients' records, finds no others
currently taking the medications, and
updates its internal drug review
program.
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As envisioned, the National Health Information
Infrastructure is fundamentally about bringing
timely health information to, and aiding
communication among, those making health
decisions for themselves, their families, their
patients, and their communities. Individuals,
healthcare providers, and public health
professionals are key NHII stakeholders and
users, and the applications that meet their
respective needs are distinct dimensions of the
infrastructure.
Health information is stored in many locations,
including providers' offices, organizational and
governmental Web sites, and population health
databases. The NHII will give users access —
when it is appropriate, authorized by law and
patient approval, and protected by security
policies and mechanisms — to a hugely diverse
array of information that includes community
health data, personal health histories,
consumer and clinical information, research
findings, and much more.
Because information technology can be useful
only when the nontechnical elements are well
established, the NHII is only secondarily about
technology. Taken as a whole, the NHII
includes the values, practices, relationships,
laws, standards, systems, applications, and
technologies that support all facets of
individual health, health care, and population
health. It encompasses tools such as clinical
practice guidelines, educational resources for
the public and professionals, geographic
information systems permitting regional
analysis and comparisons, health statistics at
all levels of government, and many forms of
communication among users.
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Responding rapidly to individual emergencies and local public health threats:
66-year-old Mrs. F. and her sister are camping in a national park. While hiking, she experiences
severe stomach and chest pains. She activates her wireless automated medical alert system,
which includes a global positioning system. It alerts the closest emergency medical team, which
arrives quickly. Simultaneously, Mrs. F. 's own cardiologist, Dr. Y., in another State receives the
same alert. The emergency team, which has standing permission to access relevant medical
history in patients' online records, rushes Mrs. F. to the closest emergency room. All the
necessary patient information is available to Dr. X., the physician on duty in the emergency
room, when Mrs. F. arrives. After a thorough examination and tests and online consultation
with Dr. Y., Dr. X. determines that Mrs. F. probably has gastroenteritis, advises her to drink lots
of fluids, and clears her to return to her camping trip. Mrs. F. 's electronic personal health
history and medical record are simultaneously updated with the information from the
emergency room visit. Dr. Y., the cardiologist, is notified that Mrs. F. is cleared to continue her
trip. The local public health department automatically is notified and de-identified health
information from Mrs. F. 's emergency room visit is added to its database on incidents in local
parks. That afternoon, health department staff identify a broken sewer line that contaminated
park drinking water and caused the outbreak of bacterial gastroenteritis.
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As defined by the Committee, the infrastructure
includes these basic elements, each of which is
necessary, but none of which is by itself
sufficient:
- Values
The guiding purpose of this NHII initiative
is making possible the appropriate use of
data, information, and knowledge in
support of optimal health and quality of life
for all Americans. This purpose
emphasizes that the full potential of the
NHII will not be achieved until its benefits
can be shared equally by all. This means
that technology and electronic information
and services must be available in all homes
and communities. This purpose also
reflects the importance of privacy and
confidentiality, consumers' control of their
personal health information, cooperation,
respect for the doctor/ patient relationship,
and prudent use of resources to minimize
both overuse and underuse as the
underlying values of the NHII.
- Practices and relationships
The NHII will be established to facilitate
appropriate health information and
knowledge flow and communication both
within sectors and between them. These
sectors encompass, among others,
healthcare organizations, community
organizations, physicians, consumers,
public health professionals, researchers,
and policymakers. Knowledge sharing,
information management, and
communication are vital facets of the
relationships between healthcare providers
and patients, between public health
organizations and healthcare
organizations, and among peers (e. g.,
provider-to-provider or consumer-to-consumer).
To date, structural and
cultural — and, frequently, competitive —
forces have worked against horizontal
information flows in the health field.
Realizing the full value of the NHII will
involve changes in the information sharing
practices of every constituency, including
consumers, that will only happen when
individuals and organizations recognize the
benefits they can derive once they make
those changes.
- Laws and regulations
Laws and regulations create the framework
for the NHII. They set the ground rules
within which private entities and
Government agencies may conduct health-related
business and individuals may use
information. In addition to issues of
privacy, security, and standards, which are
covered below, Federal and State
legislation establishes requirements for
payment for medical services, professional
licensure and liability, and intellectual
property protection and equitable access.
It also set rules for reporting information
considered vital for public health.
Legislation authorizes the use of public
resources for NHII-related research,
development, and training, not only for
leading-edge technologies but also for
innovative public health and medical
practices. Laws and regulations promoting
the portability of health information will be
essential for the NHII.
- Privacy
The health information infrastructure's
proper functioning depends on enactment
of national legislation on the privacy,
confidentiality, and security of health
information. The legislation must specify
the conditions under which personal health
information may be collected, stored, and
shared, as well as penalties for abuses.
The HHS privacy regulations are a step in
that direction. In this context, it is
important to stress what the NHII is not.
The NHII does not require an integrated
national database of medical records. In
fact, healthcare providers will retain
responsibility for maintaining their own
patients' medical records. The
confidentiality of personal health records
and consumers' control over their own
records are basic tenets of this vision,
consistent with the HHS privacy
regulations. The Committee expects that
privacy and confidentiality protections will
improve in the context of the NHII.
- Standards
Standards are the building blocks of
effective health information systems and are
essential for efficient and effective public
health and healthcare delivery systems.
The Committee believes that standards set
the foundation upon which innovation in
the health information technology field can
be built. Health data standards are critical
to support the flow of information
throughout the public health and
healthcare systems. Standards are needed
for core data sets; classifications and
terminologies; uniform identifiers;
comparable methods for data collection
and reporting; data access, disclosure, and
confidentiality; and data transmittal.
Section 3 contains further information
about electronic data standards. The
Health Insurance Portability and
Accountability Act (HIPAA) has put in
motion activities that are moving health
information toward standardization.
NCVHS has set forth a comprehensive set of
recommendations to enhance the
effectiveness of clinical transaction
standards and the development,
distribution, and maintenance of clinical
medical terminologies in its Report to the
Secretary on PMRI Standards. 12
- Technology
The tangible technical aspects of the NHII
include network backbones such as the
Internet in its present and future versions;
the World Wide Web; wireless connections;
hardware such as computers, Internet
appliances, and handheld devices; and
applications for information management,
decision-support tools, communication,
and transactional programs. Also involved
are technical capabilities in areas such as
bandwidth and latency. 13 A critical part of
the NHII strategy will be proactive efforts to
ensure that technologies and standards that
enable these technologies evolve
specifically to meet health needs.
- Systems and applications
Clinical and public health information
systems are the chief engines of the NHII.
They capture, store, organize, and present
data about medical care and population
health status that are crucial for routine
work, problem solving, planning, and
emergency response. Applications enabling
these systems to perform and communicate
are already quite robust, but they tend to
be vertical stovepipes of numerical content
only. A fully developed NHII would
improve cross-system data exchange and
enhance multimedia and geospatial
capacities. Essential nondata applications
include interpersonal communications
(text, voice, and video), remote monitoring
and reporting, transactional services such
as scheduling appointments and purchasing
items, and interactive educational and
decision-support tools for professionals
and the public.
An overarching principle applies to all the
elements mentioned above. It is critically
important that the NHII vision and its
embodiment be large enough to accommodate
major changes in the future. The NHII is by its
nature dynamic; every one of the elements
listed above will evolve, just as the content of
information and knowledge will change. All of
the entities contributing to the NHII must
therefore think big — especially the Federal
Government in its leadership role. In order to
coordinate stakeholders appropriately and see
that everyone can benefit from the evolving
information infrastructure, HHS must craft a
national health information policy that is broad
and flexible enough to encourage and
channel — rather than inhibit — positive
change.
Three Dimensions: Personal Health, Healthcare Provider, and Population Health
As noted, the NCVHS Interim Report on the
NHII (in the Appendix) presents
the Committee's thinking in some detail, with
extensive examples. Here we summarize the
structure as conceptualized by the Committee
and affirmed by stakeholders. The functions of
the NHII can be illustrated by exploring three
interactive and interdependent dimensions.
(See the figure below.) They are defined
by what they encompass, whom they serve, how
they are used, and who has primary
responsibility for content and control. The
dimensions provide a means for
conceptualizing the capture, storage,
communication, processing, and presentation
of information pertaining to the three major
groups of users of information for health:
consumers, healthcare providers (both
individuals and organizations), and
communities (local, State, and national). The
Committee calls them, respectively, the
personal health dimension, the healthcare
provider dimension, and the population health
dimension.
- The personal health dimension supports
individuals in managing their own wellness
and healthcare decisionmaking. It
includes a personal health record that is
maintained and controlled by the
individual or family, plus nonclinical
information such as self-care trackers and
directories of healthcare and public health
service providers.
- The healthcare provider dimension
promotes quality patient care by providing
access to more complete and accurate
patient data on the spot, around the clock.
It encompasses information such as
provider notes, clinical orders, decision-support
programs, and practice guidelines.
- The population health dimension
(called the community health dimension in
the Interim Report) includes information
on both the health of the population and
the influences on it. The population health
dimension makes it possible for public
health officials and other data users at
local, State, and national levels to identify
and track health threats, assess population
health, create and monitor programs and
services including health education
campaigns, and conduct research.
Consumers, providers, and those responsible
for population health at all levels use much of
the same information; but they do so for
different purposes — respectively, to manage
personal and family health, to care for patients,
and to protect and promote the health of the
community and the Nation. All of these groups
also have an interest in using information to
track the effects of public policy and to engage
in efforts to influence it. The role of some key
participants in the NHII may cross multiple
dimensions. Health plans' activities, for
example, are reflected in both the healthcare
provider and personal health dimensions. The
idea behind the NHII is to push information
and knowledge to the point where all these
health decisions are made, so the right
decisions can be made at the right time.
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