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4
Information and Communications
Technology Infrastructure:
A "Paperless" Health Care System
SUMMARY DESCRIPTION
The wise use of information and communications technology (ICT) has the potential to improve
the quality and safety of health care while at the same time enhancing access and reducing waste,
unnecessary delays, and administrative costs. Some degree of improvement results from use of the
recent rapid and dramatic advances in moving information among a variety of clinicians and experts.
Even more important over the long run, however, is the capacity of ICT to make it possible to work
differently and better.
The provision of health care consists of very complex processes, including initiating efforts to
diagnose or treat a patient's problem; receiving and acting on the results of laboratory, radiology, anti
other diagnostic tests; communicating with patients about results and progress; and monitoring
patient progress and ensuring appropriate follow-up (Middieton et al., forthcoming). At every step of
the way, communication among providers and between clinicians and patients is critical, and infor-
mation and knowledge must be made available to users when they need it.
. —
Demonstration projects in this category would be 5 years in duration and are intended to result in
the establishment of a state-of-the-art health care ICT infrastructure in a state, community, or a multi-
state region that is accessible to all providers and all consumers. Most patient information should be
computer-based, virtually eliminating processes based on moving, finding, or filing paper. There
would still be some situations in which paper is used (for example, an attending physician may find it
useful to carry a concise summary of patients' clinical information when making rounds or to make
handwritten notes that are subsequently scanned into the computer-based record). However, the
volume of paper would be significantly reduced. More important, ambulatory practices, hospitals,
[A
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ICT Infrastructure
ancillary providers, and others would be inter-
connected, and the availability of patient and
other information to support decision making at
the time of care delivery would be dramatically
improved.
All demonstration projects in this category
would include the formation of some form of
public-private partnership. In general, the
demonstrations would encompass three phases:
1. A planning and preparation phase, which
includes the establishment of a public-
private partnership.
2.
3.
Establishment of a secure platform for com-
munication and sharing of clinical and other
data between patients and providers and
among providers. This infrastructure-
building phase is intended to allow rapid
movement of computer-based information
to multiple sites on a need-to-know and
right-to-know basis.
Rapid incorporation of the information
made accessible through the platform to
support (1) the steady migration of adminis-
trati~e and business processes to the plat-
form (e.g., appointment scheduling, insur-
ance eligibility checking, billing and
payment), (2) development and application
of knowledge management and decision
support tools, and (3) development of new
e-health delivery modes. Critical to accom-
plishing this phase is the computerization of
all or nearly all types of patient data.
Phase ~ should be accomplished within
6 months and phase 2 between months 7 and 24.
During phase 2, the community would begin to
reap tangible benefits from the demonstration
project. Phase 3 would proceed in parallel with
phase 2 and continue indefinitely, producing
stepwise benefits with enhancements to the
applications performed using the platform.
Demonstration projects in this category
would be greatly facilitated by an immediate
emphasis on accelerated development of
58 1~
national data standards in certain key areas. All
projects should be required to conform to
national standards where they exist and to feed
back experience on the use and utility of these
new standards, thus facilitating the development
of even more robust standards. Furthermore,
there should be an expectation that the projects
will lend their expertise to and share their tech-
nology with other geographic areas.
The initial demonstration projects should
serve as the first generation or starter nodes of a
national health information infrastructure. The
committee recommends that a total of ~ to 10
demonstration projects be funded in this cate-
gory, with the expectation that a second genera-
tion will be funded in 2005.
One-time-only federal financial support
would be required to carry out phases ~ and 2.
In general, private-sector health care providers
should commit to making the ongoing financial
investments necessary to carry out the develop-
mental activities in phase 3. Payment structures
would need to be realigned so that providers
will benefit financially from the ongoing invest-
ments required to sustain the [CT infrastructure.
Some combined federal and state assistance to
safety net providers would be needed to enable
their full participation in the ICT infrastructure.
BACKGROUND
The potential for information technology to
improve the quality and safety of health care is
enormous (Institute of Medicine, 1991, 1997,
2001~. A strong ICT infrastructure can help
patients be more informed and better prepared
to engage in decision making and to carry out
their treatment plan. From a clinician's perspec-
tive, [CT includes many powerful tools that are
useful in applying scientific evidence to clinical
decision making and in providing care that is
safe. Specifically, the ICT infrastructure can
contribute to improvements in the following
areas:
.
Communication Web-based interactions
between patients and clinicians and among
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ICT Infrastructure
members of the care team, including e-mail,
home monitoring, teleconsulting, and other
applications.
.
.
.
Access to patient information Computer-
based health and clinical information for
each patient that is complete, organized, and
available in real time to the patient and the
patient's providers, while at the same time
being confidential and secure.
Knowledge management Easy access to
reliable information from the science base
in forms that are useful to both clinicians
and patients (and accommodate both
English- and non-English-speaking patients
and different levels of health literacy).
Decision support Computer-aided deci-
sion support tools for both patients and
clinicians, such as reminder systems
targeted at clinicians or patients, medication
order entry systems, and chronic disease
management systems.
Properly structured ICT also has great
potential to reduce some administrative costs
and burden. Administrative costs are estimated
to account for 20 to 30 percent of the nation's
health care expenditures (Evans and Roos,
1999; WooThandier, 1997; Woolhandler and
Himmelstein, 2002~. The development of a
secure ICT platform to support clinical, admin-
istrative, and financial transactions, as well as
the use of computer-based clinical records,
should over time reduce some administrative
costs and dramatically improve the effective-
ness, safety, and timeliness of the health care
system.
As the ICT infrastructure expands beyond
the boundaries of a single or several organiza-
tions to span a community, a state, and eventu-
ally the nation, there is the potential for it to
support many additional clinical, research,
professional education, and public health appli-
cations (National Research Council, 2000~. A
community-wide infrastructure can facilitate
access to far more complete clinical information
by all of the patient's providers, not just those
within a given institution (e.g., hospital or
health system). This interconnectedness offered
by a Web-based platform, accompanied by
protocols for data exchange, has great potential
to improve quality and efficiency, especially in
communities where health care delivery is
highly decentralized. Clinical research applica-
tions include the development of large-scale
biomedical databases that can support popula-
tion-based, longitudinal studies. Professional
education applications include improved access
to the knowledge base, virtual conferences, and
other distance-learning applications.
Of particular importance in light of height-
ened concerns about chemical and biological
terrorism are the public health applications of an
ICT infrastructure. These applications include
improved tracking and surveillance for bioter-
rorism and other public health threats, and rapid
dissemination of important health and medical
information to providers and possibly citizens
(Tang, 2002~.
With the passage of the Health Insurance
Portability and Accountability Act of ~ 996
(HIPAA) (Public Law 104-191) and the Depart-
ment of Health and Human Services' recent
promulgation of regulations to protect data
r ~ -A
privacy and security, one major impediment to
the establishment of an ICT infrastructure has
been removed. The time is right for widespread
adoption of computer-based clinical records.
A health information infrastructure as envi-
sioned by the National Committee on Vital and
Health Statistics (2001) involves three dimen-
s~ons:
Personal health cttimension~reation of a
personal health record by an individual (and
his or her family or caregivers), which
includes both information from the clinical
record that is relevant to patients and non-
cTinical information' such as self-care tracl`-
ers and directories of health care and public
health service providers.
Health care provider dimension~reation
of a computer-based clinical record includ-
.~
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f TOT Infrastructure
ing such information as clinical orders,
prescriptions, and clinician notes; ready
access to practice guidelines and the science
base; and the application of decision
support tools.
Population health dimension- Collection of
information on the health of the population
and the salient influences, making it possi-
ble to identify and track health threats,
assess population health, sponsor targeted
health education campaigns, and conduct
research. Much of the necessary data can
come from deidentified personal and patient
records that are accessed on a right- and
need-to-know basis.
Although the potential applications and
benefits likely increase logarithmically as the
boundaries of the [CT infrastructure expand, so,
too, does the complexity of implementation.
Establishing such an infrastructure involves the
development of data standards, laws, regula-
tions, business practices, and technologies
(National Committee on Vital and Health Statis-
tics, 2000~. Payment policies must be modified
to recognize new methods of care delivery (e.g.,
e-visits, remote consultations, remote monitor-
ing of patients). In many of these areas, federal
leadership will be needed to move forward,
because numerous issues of clinical data owner-
ship, security, and privacy have yet to be
addressed.
The up-front capital investments required to
establish the ICT infrastructure will be quite siz-
able. The United States has successfully
confronted similar challenges, however. Follow-
ing World War II, the federal government
supported the development of the Interstate
highway system, and years later, the Defense
Advanced Research Projects Agency fitnded the
work that led to the modern Internet (National
Research Council, 2000; Weingroff, ~ 996~.
Today, the challenge is not just one of ensuring
access to public health data for homeland secu-
rity, but also one of ensuring national health and
economic productivity through a healthy work-
force. The committee is confident that over time clinicians
1
the return on investment in terms of dollars and
health will rival the success of these other major
national infrastructure investments, and that
Americans of all socioeconomic levels will
benefit (U.S. Department of Commerce, 2000~.
GOALS
Demonstration projects in this category are
intended to result in a practice environment that
relies on computer-based patient records, and
allows clinicians and patients immediate access
to evidence and other information needed to
support decision making. The goal is for the
following capabilities to be available, for the
most part, in real time:
1. Ready access to information by clinicians
and patients on a right- and need-to-know
basis
Eligibility, appointment, and account
status information
Computer-based patient records; for
example, a summary of current prob-
lems, medications, and allergies,
together with all results, notes, and
summaries
Disease management guidelines
2. Support tools for patients
Educational materials
Tools to monitor individual health
status and needs
Tools to track progress in meeting clini-
cal goals and compliance with treatment
plans
Tools to model preferences and the
impact of alternative treatment deci-
sions and outcomes
Tools to access patient records and to
contribute information to these records
3. E-maiT and audiovisual communication
between patients and clinicians and among
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f
ICT Infrastructure
Nonepisodic care (e.g., short questions
and answers)
Home monitoring
Remote consultation
4. Data capture and decision support tools for
.. . .
clinicians
Reminder systems
Computer-based order entry and pre-
scription writing, with dosage and inter-
action checking
Note capture with immediate coding for
billing
Individual registries for chronic disease
management
5. Management
Appointment scheduling and admis-
sions
Workload scheduling and staffing
Automated charge capture
Contract modeling
Enrollment in insurance programs
.
- Claim subrn~ssion, with immediate veri-
fication of completeness and eligibility
for payment
6. Performance measurement data for ongoing
assessment of quality and safety improve-
ments
7. Accountability
Compliance with performance reporting
requirements in the areas of safety and
quality
Demonstration of improvements in
safety and quality
Reporting of relevant data to public
health authorities
DEMONSTRATION ATTRIBUTES
Demonstration projects in this category
6 WOUi] likely include the three phases enumer-
ated earlier. The work in phases ~ and 2 should
establish an initial track record of stakeholders
working together on a substantial statewide
undertaking that has enormous potential to
benefit patients and the community but also
requires extensive collaboration and shared
decision making. Although critical, these phases
would accomplish only a subset of the goals
listed above. Phase 3 would entail extensive
change within every health care organization.
Emphasis is on the computerization of many
types of patient and other data that currently are
paper-based in most health care settings. This
phase would also involve doing work differ-
ently. The increasing computerization of clinical
data and the availability of knowledge manage-
ment and other decision support tools would
open up new opportunities to redesign care
processes in ways that would improve safety,
effectiveness, and efficiency and be more
responsive to patient preferences and needs.
Phase 3 would continue indefinitely as advances
in medicine, science, and technology offer new
possibilities, but by year 5, each demonstration
site should be within reach of the goal of a near
"paperless" health care system. Each of the
three phases is discussed in detail below.
Phase I: Planning and Preparation
During this phase, a lead organization, such
as a state agency, an academic health center, a
consortium of providers, or a state hospitaV
health system association, would be responsible
for establishing a broad-based public-private
partnership. It is critical that the commitment of
all major stakeholders in the community be
secured at this stage. The demonstration
projects would directly impact patients, physi-
cians, nurses, hospitals, nursing homes, home
health agencies, free-standing clinical laborato-
ries, imaging centers, and others. Careful atten-
tion should be paid to ensuring that each of
these stakeholders derives both near- and iong-
term benefits Tom the ICT infrastructure.
Strong leadership from professional and hospi-
tal associations, academic health centers, the
state government, and consumer groups would
be needed.
IT
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~ ICT Infrastructure
This first phase would also involve the
development of a detailed operational plan for
carrying out the 5-year demonstration project.
The operational plan should include proposed
contractual agreements with all participants and
vendors; a business and financial plan; and poli-
cies and procedures for data access and manage-
ment, including security and authentication.
Phase 2: Data Exchange PIafform
The primary advantage of establishing a
data exchange platform is that it facilitates
access to computer-based patient inflation in
real time regardless of the form in which that
information is currently being collected, coded,
and classified by the provider or ancillary
service organization. Establishment of a plat-
form for sharing data poses a reasonably low
risk of failure because it does not require
providers (e.g., hospitals, health systems, physi-
cian groups) or other participating organizations
(e.g., laboratories, imaging centers) to make
major changes in their existing systems. Effect-
ing the collaboration required for such data
exchanges can be challenging, however, and
hence leadership from the federal government
could be quite useful in this regard.
Perhaps the best-known example of a data
exchange platform for patient information is
operated by CareScience in Santa Barbara There are other examples of data sharing
County, California (carescience' 2001~. Care networks. With support from the National
Data Exchange was initiated in 1991 as a low- Library of Medicine ~M), the Regenstrief
cost public utility mode] that would allow Institute has developed a community-wide elec-
participat~ng organizations to share data through Ironic medical record system called the Indiana
an Tnternet-based system About 25 participat- Network for Patient Care (lNPC) (Regenstrief
sing organizations accounting for the majority of Institute, 2002~. The lNPC is being used by ~ ~
care provided in Santa Barbara County include geographically separated hospitals in the Indian-
hosp~tals and health systems, physician prac- apolis metropolitan area to improve care for
tices laboratories and ancillary providers clin-
~ ~ patients presenting to their emergency depart-
ics and outpatient facilities public health agen- ~ ~ ~
~ meets. In W~nona, Minnesota, Cerner Corpora-
cies, health plans and payers, pharmacies, an] lion and Hiawatha Broadband Communications
employers. The key characteristics of the initiated. a partnership with Winona Health to
system are as follows
create W~nona Health Online, a network con-
necting the local health system, clinics, physi-
cians, and patients (Chin, 2000~. In addition, the
Patient Safety Institute (PSI), a nonprofit
organization that has developed a secure com-
.
Users (i.e., clinicians, hospitals, laborato-
ries) need only a Web browser and an Inter-
net connection to participate.
Patient data remain at the* original sources
(e.g., hospital legacy system, imaging center
data system), but authorized users are
allowed to view the data.
Participants determine who can and cannot
access patient data according to protocols.
For instance, when a participant requests
patient information, the data exchange veri-
fies the requester's digital credentials.
Patients do not have unique identifiers;
rather, the data exchange maintains a file
with patient demographic data and corre-
lates these data with those maintained by
the provider organization to produce a vali-
dated patient search. The locations of the
patient records are then stored with the
patient's demographic data as "pointers" or
"locators."
The data exchange maintains a secure portal
through which data may be exchanged
"peer-to-peer."
The data exchange maintains audit logs of
all requests (i.e., who, when, what data
requested).
t 62
OCR for page 63
ICT Infrastructure
munications network for real-time access to
clinical information at the point of care, has
selected two hospital sites in Washington State
to demonstrate this network (Patient Safety In-
stitute, 2002~. One of the major benefits of a
data exchange is that it makes more complete
clinical data available at the point of service.
The availability of this information should result
in fewer medical errors, less waste in terms of
redundant services, and improved timeliness of
services.
The magnitude of benefits derived from a
data exchange depends on the extent to which
patient data are computer-based. The types of
transactions and applications that can be carried
out over the network expand dramatically with
the availability of more computer-based clinical
and other patient data. The committee expects
that the mere existence of a data exchange
within a community would generate momentum
to add other types of data.
Phase 3: Comprehensive ICT
Infrastructure
All of the demonstration projects are
intended to result in a health care system that
relies on computer-based patient records. The
committee recognizes that not all sites will
achieve this goal by year 5, but believes that
most can make considerable progress in com-
puterizing key aspects of the patient record,
such as laboratory, imaging, and prescription
drugs.
. . . ~ ~
. · .
The immediate objective of these demon-
strations is to provide electronic access to those
portions of a patient's clinical record that are
computerized, and to encourage steady progress
towards more complete computerization of
patient information. Of course, access would be
limited to authorized users (e.g., clinicians,
ancillary service organizations, patients and
their families). The ICT infrastructure should
facilitate Internet-based communication
between patients and clinicians, between
patients and patient groups, and among cTini-
cians. Over time, the infrastructure should be
capable of securely supporting a wealth of
applications, including (~) insurance enrollment
and eligibility verification, (2) claims process-
ing and payment, (3) clinical knowledge man-
agement for clinicians and patients (e.g., guide-
lines, chronic disease management sites),
(4) decision support tools (e.g.' reminders, pro-
vider order entry systems, (5) telemedicine (e.g.,
specialist consults, in-home monitoring),
(6) disease surveillance, and (7) a public health
rapid alert system.
The demonstration sites selected should be
ones for which there is a reasonable expectation
that this more extensive ICT infrastructure can
be established within 5 years. This may mean
selecting sites in geographic areas in which
some investments in building an ICT infrastruc-
ture have already been made, the necessary
expertise exists, and there is strong interest in
working toward the accomplishment of commu-
nity-wide goals. Sites that already have some
building blocks in place will be able to move
more expeditiously and will be more likely to
achieve the 5-year goal. The potential for resis-
tance to change from one or more important
stakeholders should not be underestimated.
Applicants should also be asked to detail the
benefits that each major stakeholder is expected
to derive from the demonstration project during
the first few years.
In many geographic areas, there are pockets
of innovation where strong ICT infrastructures
are already available. A number of academic
health centers, health systems, and large multis-
pecialty groups have developed strong TCT
capabilities (Doolan and Bates, 2002; McDon-
ald et al., 1999; Overhage et al., 2000; Teich et
al., 1999), and it should be possible for some
communities and regions to build upon these
successful efforts. In the public sector, the
Veterans Health Administration (VHA) has one
of the largest and most sophisticated health
information systems in the nation, serving about
5 million veterans annually in 22 designated
regions. The VHA system includes an architec-
ture that supports information exchange across
multiple clinical disciplines and lines of busi-
ness, a computer-based patient record system
for clinical documentation and information
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f ICT ]:nfrastructure
retrieval, and an e-health communications
system to provide veterans with online access to
their medical records and other health informa-
tion (Christopherson, 2002~.
Careful consideration should be given to the
best means of creating a public-private partner-
ship in a geographic area to leverage existing
resources and to ensure that no providers or
consumers are excluded. One possibility might
be for the state government, VHA, and private-
sector health care organizations and vendors to
work in partnership to establish the ICT infra-
structure. Additional support might be provided
to VHA so it can offer safety net providers (e.g.,
public hospitals, community health centers) the
opportunity to participate in its ICT system and
receive technical assistance for that purpose.
Another possibility for providing assistance to
safety net providers would be to allow a state
Medicaid program to work collaboratively with
such providers (who generally receive a sizable
proportion of their revenues from Medicaid and
the State Children' s Health Insurance Program)
to establish the necessary ICT infrastructure,
and for the federal government to provide a
90 percent federal matching rate for these
expenditures in the same way it pays for state-
leve! Medicaid Management Information
System development expenditures under Medi-
caid (Congressional Research Service, 1993~.
MAKING PROGRESS TOWARD A
NATIONAL ICT INFRASTRUCTURE
There is a good deal of truth to the saying
that "all health care is local." For the most part,
health care is provided by local institutions and
clinicians. Communities take great pride in their
health systems, and efforts to develop TCT infra-
structure would best build on this foundation.
As important as grassroots support may be,
however, a strong federal role in setting stan-
dards for ICT infrastructure is critical for
several reasons. First, patient care-seeking
behavior does not respect strict geographic
boundaries, and this will likely be the case
increasingly in the fixture. An estimated 25 per-
cent of the U.S. population resides in a metro-
politan area that crosses state boundaries
(Salinsky, 2002), and many likely receive
services in more than one state. The Internet has
opened up many opportunities for telemedicine,
a method of health care delivery that often
crosses state and sometimes national bounda-
ries. A patient' s computer-based record should
be accessible to all health care providers regard-
less of geographic location.
Second, the capability to monitor and
respond to infectious disease outbreaks and
bioterrorist attacks requires a national if not
global ICT infrastructure. The ICT infrastruc-
tures developed by the various demonstration
sites should be able to interface with each other,
and over time these state- or community-based
systems should become part of a nationwide
infrastructure.
Third, the return on investment in knowI-
edge management and other clinical decision
support tools would be much greater if the soft-
ware can be readily used in multiple geographic
settings. The promulgation of national standards
in some areas is critical to achieving this objec-
tive.
Fourth, many health care administrative
functions, such as insurance and federal regula-
tory requirements, are national in scope.
National data standards in certain areas are im-
portant to lessen the burden associated with
provider compliance with these requirements.
The committee wishes to emphasize the
importance of viewing the state- or community-
based ICT demonstrations as part of a broader
strategy intended to result in the establishment
of a national ICT infrastructure. Specifically,
demonstration projects in this category are
intended to accomplish two objectives:
.
Each individual demonstration project
should result in the establishment of a com-
munity- or state-wide ICT infrastructure
that begins to yield benefits to the commu-
nity in the near term.
Collectively, the demonstration projects in
this category should within 3 years consti-
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I:CT Infrastructure
tute primary or starter nodes of what will be
expanded to constitute a national ICT
infrastructure .
One impediment to establishing an ICT
infrastructure either locally or nationally is the
difficulty of getting all participating health care
providers and vendors to agree on uniform data
standards (i.e., the methods, protocols, and
terminology adhered to by everyone for the
purpose of allowing disparate information
systems to interoperate successfully). The term
"uniform data standards" is not intended to im-
ply that all clinical and other information in the
patient record must be coded and classified in
exactly the same way, although in some
instances strict adherence to what is known as
"controlled vocabulary" may be desirable. In
many cases, the development of"reference stan-
dards or terminology" may be adequate, with all
participants agreeing to code data at a sufficient
level of detail to allow mapping of local data to
the national reference standard (Stead et al.,
2000).
forward by implementing the standards recom-
mended by the National Committee on Vital
and Health Statistics in reports sent to the Secre-
tary in the past 3 years. In particular, the report
entitled Uniform Data Stanclards for Patient
Medical Record Information contains a number
of standards that deserve prompt use in the
Medicare and Medicaid programs and within all
portions of the federal government that utilize
health data standards (National Committee on
Vital and Health Statistics, 2000~. A partial list
of these standards is Health Level 7 (HL7),
Version 2; Digital Imaging and Communica-
tions in Medicine (DICOM); National Council
for Prescription Drug Programs (NCPDP); and
for early adoption, Institute of Electrical and
Electronics Engineers, Series 1073 (IEEE 1073)
Medical Device Communications and HL7,
Version 3.
It will be critical for the Secretary of Health
and Human Services, working with the Presi-
dent and Congress, to pursue an aggressive
agenda for the adoption of national health data
standards. Some degree of standardization is
important to improve the interoperability of ICT
systems; the comparability and usefulness of the
data; and the quality, accountability' and integ-
rity of the data. Numerous expert panels have
recommended a stronger federal role in the
promulgation of standards to be used nation-
wide (National Committee on Vital and Health
Statistics, 2001; National Research Council,
2000), but to date, progress in this area has been
slow. The proposed demonstration projects are
unlikely to thrive in the absence of progress in
establishing data standards. The American
public will reap a far greater return on invest-
ments in these demonstration projects if they are
pursued in tandem with national and global
efforts to establish data standards.
The Secretary of Health and Human
Services can immediately move this agenda
Of particular importance is the work of
HL7, one of the largest pnvate-sector standards-
setting organizations, focusing on Version 3
standards for data interchange. With some addi-
tional financial resources, the work of this group
could be accelerated, thereby completing some
important aspects of standards setting within
about 18 months (Hammond, 2002~. The com-
pletion of this work would greatly facilitate the
development of the ICT demonstration projects
proposed in this report and perhaps even reduce
the costs of such demonstrations.
There are some important standards-setting
efforts in the federal government as well. The
work of the Consolidated Health Informatics
Initiative (CHTI) and NLM is particularly note-
worthy and can be leveraged. CHIl was created
under the auspices of the White House Office of
Management and Budget in 2001 to facilitate
the development of standards that would ensure
compatible ICT systems across the government
health programs (Office of Management and
Budget, 2002~. NLM has made extensive efforts
through the Unified Medical Language System
project to consolidate the various controlled
vocabularies used in medicine and to provide
tools needed to make the relationships among
terms clear to human and machine alike
(Humphreys et al., l 998; Lindberg et al., l993~.
_
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f ICT Infrastructure
These groups are well positioned to play impor-
tant roles in the further development of clinical
data standards.
Recent private-sector efforts also present an
excellent opportunity for the federal govern-
ment to collaborate in and obtain broad-based
support for national standards-setting initiatives.
Specifically, the Markle Foundation's Connect-
ing for Health Initiative is focused on building
consensus on and accelerating the rate of adop-
tion of clinical data standards within health care.
The group has already obtained general agree-
ment among a broad stakeholder group on
several clinical data standards that are ready for
adoption, and more work is under way. An early
product of this effort is an inventory of stan-
dards domains necessary to support computer-
based records; these include reference informa-
tion models, data types, terminology, clinical
documents, clinical templates, data interchange,
implementation manuals, rules, toot sets, termi-
nology services, security, unique identifiers for
patients and clinicians, and guidelines (Marble
Foundation, 2002~. The IOM Committee on Pa-
tient Safety Data Standards, scheduled to
release a report in fall 2003, is currently work-
ing to identify the types of standards needed for
monitoring safety and quality, and is providing
guidance to the federal government on actions it
might take to facilitate the development of such
standards.
Although a more intensive effort at the
national level to establish data standards is de-
sirable, the committee does not intend to imply
that the development of ICT infrastructures at
the state or community level should be post-
poned until national standards are promulgated.
The setting of national standards will be an
ongoing process for many years if not decades
to come. All information systems will need to
accommodate frequent updates in standards.
Also, as discussed above, some national data
standards provide room for local sites to map
their coding systems to a national reference
standard.
The goal of having these initial demonstra-
tion projects serve as the hubs of a national ICT
infrastructure has implications for the selection
66 11
of demonstration sites. Consideration should be
given to ensuring balanced geographic represen-
tation when selecting the demonstration sites.
All major regions of the country (northeast,
south, central, northwest, and southwest) and
both urban and rural areas should be represented
since the issues involved in implementing ICT
capabilities differ greatly depending on the size
and [CT sophistication of clinical groups. All
participants in the demonstration program
should be willing to sponsor site visits so others
can learn from their experiences.
The Agency for Healthcare Research and
Quality should be charged with establishing a
central coordinating unit for the demonstrations
in this category. Such a unit might be estab-
lished in an academic or other applied research
setting. The coordinating unit should be tasked
with the following:
Monitoring and evaluating the progress of
the demonstrations
Documenting successful and unsuccessful
change management strategies pursued by
the various demonstration sites
Establishing ongoing communication
among demonstration sites to share learning
experiences and to discuss how best to over-
come challenges
Quantifying the benefits and costs associ-
ated with the demonstrations, and identify-
ing and communicating best practices in
care redesign
This last point deserves special attention. Reap-
ing a return on investment in the ICT infrastruc-
ture will require changes in care processes. The
costs associated with making these changes
should be captured and included in the cost-
benefit analysis. Another complicating factor is
that benefits from investing in ICT accrue to
many stakeholders, and not necessarily those
who made the investment. Substantiating who
benefits and who pays should be part of the
evaluation.
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f
ICT Infrastructure
The coordinating unit should have a strong
communication capacity. It should be responsi-
ble for reaching out to various stakeholders,
such as professional societies, health care asso-
ciations, academic health centers, and others, to
assist in disseminating knowledge gained Tom
the demonstrations and in building a strong base
of support for the establishment of a national
ICT infrastructure.
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Representative terms from entire chapter:
data standards
