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From Regional Healthcare Information Organizations to a National Healthcare Information Infrastructure
Abstract:
Recently there has been increased focus on the need to modernize the healthcare information
infrastructure in the United States[1,2]. The US healthcare
industry is by far the largest in the world in both absolute dollars and in per
cent of GDP (>$1.5T – 15% of GDP). It is also quite fragmented and complex.
This complexity, coupled with an antiquated infrastructure for medical data, leads
to enormous inefficiencies and sources of error. Driven by consumer, regulatory,
and governmental pressure, there is a growing consensus that the time has come
to modernize the US Healthcare Information Infrastructure (HII). A modern HII
will provide care givers with better and timelier access to data. The launch of
a National Health Infrastructure Initiative (NHII) in the US in May 2004 – with
the goal of providing an electronic health record for every American within the
next decade- will eventually transform the healthcare industry in general just
as I/T has transformed other industries in the past. While such transformation
may be disruptive in the short term, it will in the future significantly
improve the quality, efficient, and successful delivery of healthcare while
decreasing costs to patients and payers and improving the overall experiences
of consumers and providers. The key to this successful outcome will be based
on the way we apply I/T to healthcare data and to the services delivered through
that I/T. This must be accomplished in a way that protects individuals, allows
competition, but gives caregivers reliable and efficient access to the data
required to treat patients and to improve the practice of medical science.
Introduction:
Improving the state of healthcare I/T has become a bipartisan top-priority issue for the United States. In his State of the Union Address on January 20, 2004, President George W. Bush stated[1]:
By computerizing health records, we can avoid dangerous medical mistakes, reduce
costs, and improve care.
Also in 2004, Congressman Patrick J. Kennedy
(D-RI) officially introduced the "Josie King Act" (also called the "QUEST Act")[3].
This act is named in honor of an 18-month old child who died as a result of
preventable medical error. The bill proposes to create an I/T backbone
for the American healthcare industry by 2015.
The largest
challenge we face in realizing a national information infrastructure is to
define an implementation model that is<> simultaneously consumer-centric, cross-institutional and supports the longitudinal healthcare and health record standards emerging around the globe[4-9].
Furthermore the model needs to support the private healthcare provider model of
the United States[4]. The system should be scaleable and
capable of supporting (in the near term) the Regional Healthcare Information
Organizations (RHIOs) and networks that are now emerging at the county and
state levels[10,11,12]. As the system grows, RHIOs will become interconnected
through a larger NHII network. In a national system, the RHIOs must have
access to pointers to Patient data regardless of where the records are located.
Through a data federation mechanism, the RHIO will be able to bring together,
on the fly, all required patient’s records and present them to a clinician at
the point of care.
This new
infrastructure would enable providers to cut long-term archiving costs and to
provide better care as patient medical histories would always be available.
Insurers would benefit, too, as quality of care for their customers improves.
Patient safety would be significantly improved and unnecessary testing would be
avoided. Privacy would be better protected, as no global patient identifiers
would be needed. Most importantly, a true EHR with summary and topical parts
could be available at the point of care, based on processes that would
constantly reconcile and summarize the incoming temporal data received from all
providers who have seen a given patient.
Towards a National Health Information Infrastructure
There are many
complex regulatory and policy decisions required to establish an NHII system[5-9].
We must meet critical technical requirements while satisfying a Social Contract
for medical care appropriate to the United States. Fortunately
the technical challenges are greatly reduced by recent advances in Web Service technologies[13].
The most important of these recent advances is the development of the
Enterprise Service Bus (ESB). The Enterprise Services bus is a scaleable
integration architecture that permits incremental integration or addition of
new data sources and data services driven by business requirements. Each new
integrated component can be wrapped as a web service so the system is not
limited by legacy standards or constraints. In IBM Research, we are working
with IBM’s Healthcare/Life Sciences Division to prototype a multipurpose HII
test bed based on an ESB architecture. The goal of this testbed is to
- Demonstrate a web service architecture that provides for scaleable integration of
healthcare information across the distributed healthcare enterprise.
- Illustrate a replicable methodology for healthcare data and application integration from
the RHIO to the NHII scale
The architecture of the HII testbed will utilize the new Service-Oriented Architecture (SOA). In
this model, participants in a regional network will make use of JServices
running on a common Enterprise Service Bus. SOA enables flexible connectivity
of applications and resources by representing them as services with
standardized interface that exchange standardized structures (Service Data
Objects SDOs). This allows rapid integration of new and existing services and
a staged development of a full National Scale system.

Figure 1: A Services Oriented Architecture for a
Model Healthcare Organization
An important goal of our Research effort is to demonstrate cross institutional EHR as depicted in
Figure 2. In a regional system, organizations including local hospitals and
ambulatory networks will continue to rely on local and unique infrastructures
of PACS system, etc. Such enterprises include providers, regulatory agencies
(e.g., the CDC), payers, and individuals (personalized medicine portals). Each
of these will have their own enterprise service bus with appropriate services
attached, while an additional cross-enterprise service bus will operate the
cross-enterprise services. Data that moves across enterprises (red dashed line
in Figure 2) will need to be de-identified according to HIPAA unless patient
consent is secured. To understand the requirements for an NHII system,
let us first consider the integration across two regional systems or RHIOs.
Each institutional system emulates a community, and as such represents much
more than a single hospital or healthcare enterprise. It is the enterprises
service bus that takes a heterogeneous institution and transforms it into a
single integrated (virtual) healthcare organization. A fully interconnected
national system is represented by a network or hierarchy of RHIOs and satellite
institutions (Figure 2).
To hide the complexity of the diverse and heterogeneous data definitions in use today, cross-institutional functions will be enabled based on the recently approved "HL7 EHR Functional Model" definition[14]. A key component required to accomplish this is an institutional extraction/translation
service within each RHIO. The job of this "extractor" is to translate data from
individual (ISV) data sources converting proprietary formats into a common
standard schema (e.g., CDA R2). By converting to a standard schema, RHIOs can
exchange data nationwide. Data received in the standard schema can in turn be
converted to the specific data definition used by particular data stores in the
receiving RHIO. Other services and data adapters will support the most
important existing standards including HL7, DICOM, HIPAA, LOINC, SNOMED,
thereby addressing the whole spectrum of biomedical care including healthcare,
public health, clinical trials, and the life sciences[14-18].
Examples of some possible cross-enterprise services are:
- Patient
Healthcare Information Location Service - a service to locate for an identified
consumer, the actual location of his data. It includes an index of consumers
and references to their data.
- Characteristics Healthcare Information Location Service - a service to locate data by
characteristics such as locate data with a specific observation. It includes an
index of de-identified consumers data and references to the original data.
- Person Identification Service - a service that correlates the various ids of the same
consumer as well as assigns an anonymous patient id (AGPI) when needed.
- Clinical Terminology Service - a service that enhances the data by adding codes from
controlled vocabularies such as LOINC, SNOMED, ICD9.
The composite of the core components and services will form the infrastructure for a Universal
Health Information Integrator. Extraction, transformation and aggregation
services designed to operate on the electronic health records in the Healthcare
Information Systems will allow the NHII offersuch innovative functions as:
- Virtualization/federation: the ability to assemble a composite health record from the partial records contained in disparate RHIO’s.
- Distribution: the ability to move a record among systems (through a standard data exchange
format).
- Windowing: the ability to reveal/transmit only relevant portions of a health record for a
given purpose and to a given user controlled by record owner policies.
- Delegation: the ability for a record owner to delegate windowing authority to a trusted
expert such as a primary care physician.

Figure 2: Cross Institutional EHR Platform
In the future, individuals will require the ability to control and manage their own
healthcare. The ESB architecture supports the creation of various web portal
based applications to support personalized medicine as well as more efficient
physician access to patient data. This paradigm change will also enable new service
and utility models for the healthcare industry. Once individuals can access
and control their own medical data, they can make better informed decisions.
The availability of more complete medical data will also lead to the creation
of new medical and health services, giving individuals greater choice and
control in planning their own care. Electronic data sources will provide the
information necessary to understand the real outcomes of accepted medical
treatments, advance medical research, and advance the science of medical care.
Table I:
Services enabled by a modern NHII
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Data Enabled Services
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Other I/T
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New Provider Information Services
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Web Portal Services (e.g., Enterprise to Web)
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Semantic Data Integration
Semantic Application Integration
ISV Connectors and Adapters
Data Integration Services
Data Transformation and Extraction
Data Mining Service
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Clinical Terminology
Pharmacy Interaction Services
Enterprise Master Patient Index:
Enterprise Location Service
EHR Virtualization
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Relationship Discovery:
Indexing and Search:
Content Management
Business Process Integration
Standard workflows:
Workflows and Scheduling
Key Performance Indicators (KPI’s)
Performance Monitoring
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Collaboration/Community
Decision
Support Services
Clinical
Genomics
Outcomes
Analysis
Community-based Health
Portals, User Interaction, Personalized Medicine
Enhanced Clinical Trial Recruitment
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With the HII test bed, we can explore many of the advanced services that will be enabled by a nation wide health information infrastructure. All of these I/T services can
be built around reusable technology components per the framework depicted in
Figure 1. Some - but not all - of the services detailed below are also
referenced in the figure. Some of the many future services are also listed in
Table I above.
Conclusion:
The time is right to begin the work to transform our national healthcare infrastructure through the proper application of IT. However, unlike IT for finance, which evolved over several decades, the
escalating cost, demand for, and error rate of our current health care
infrastructure dictates that a significant change in healthcare IT must take
place this decade as the baby boomers retire. We must achieve this rapid change
in a cost affective way that does not violate the social contract between
individuals and care givers, and we must get it right the first time. To
guarantee success, and to act quickly, we can take advantage of the latest web
services technologies and enterprise service bus architecture to create a
scaleable system wherein new data sources and new I/T services can be added
incrementally as required by an emerging new infrastructure. With proper
application of I/T, we have the opportunity to turn a revolution in healthcare
into a renaissance of healthcare that provides better, safer, and more
efficient care for all.
References:
- See:
http://www.whitehouse.gov/infocus/healthcare/
and references therein
- http://nihroadmap.nih.gov/clinicalresearch/index.asp
- The
Josie King act of 2004 (H.R. 4880), http://www.afehct.org/library/pdfs/HR4880section-by-section.pdf
- http://aspe.hhs.gov/sp/nhii/
- Health
Information Technology Report http://www.hhs.gov/news/press/2004pres/20040721.html,
- and
http://www.hhs.gov/ocr/hipaa/
- NY
Times (7/21/04) http://www.nytimes.com/2004/07/21/technology/21record.html
- Center
for Health Transformation (7/21/04)
http://www.healthtransformation.net/news/chtnews.asp
- iHealthbeat
(7/26/04) http://www.ihealthbeat.org/index.cfm?Action=dspItem&itemid=104473
- http://www.taconicipa.com/
- Berman, J., NY
Presbyterian Inks Big Multi-Year Deal with GE Medical, Health-IT World,
http://www.imakenews.com/health-itworld/e_article000183666.cfm
- IBM
Healthcare and Life Sciences, http://www-1.ibm.com/industries/healthcare/
- HL7
functional model http://www.hl7.org/
- DICOM
standard, http://medical.nema.org/
- National
Standards to Protect the Privacy of Personal Health Information, http://www.hhs.gov/ocr/hipaa/
- Logical
Observation Identifiers Names and Codes, http://www.loinc.org/
- http://www.snomed.org/
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