Standards Compliant?
Give Me Your Data?
What Community of Practice Do You Belong To?
Now we
know why
cats don’t
like to be
herded!
1
Children’s Health
Impact Guiding Technology
Dale Nordenberg, MD
June 25, 2005
Child Health Services Research Meeting
Lead - Children’s Health Information Technology Agenda
Office of the National Coordinator of Health Information Technology
And
Associate Director (Informatics) & Chief Information Officer
National Center for Infectious Diseases
Centers for Disease Control
2
Children’s Health Information
Infrastructure and Collaborative
• The Children’s Health Information Collaborative will
provide a forum, structure and process for child
health care stakeholders that will promote the
development of a children’s health information
infrastructure and support the overall
implementation of a National Health Information
Infrastructure
• The principal objective is to promote, identify and
diffuse innovation for the development of quality of
life driven health information technology initiatives
that can be networked to provide a national
children’s health information infrastructure
3
Inform Clinical Practice
NHII Goal I
ONCHIT Strategic Framework for Action
• Incentivize EHR adoption
– Shared investment in EHR for pediatrics centers will require a
interstate pediatric network since there is only one or a few pediatric
centers per market
• Reduce risk of EHR investment
– Changing clinical practice and establishing best practices will
require data sharing across the pediatric provisioning community
• Promote EHR diffusion in rural and underserved areas
– Pediatric centers are regional referral centers and have an
investment in supporting communications and data exchange with
hospitals in rural areas that will be looking to children’s center for
collaborative management of complex pediatric patients
4
Interconnect Clinicians
NHII Goal II
ONCHIT Strategic Framework for Action
• Foster regional collaboration
– Children ‘on travel’ usually seek pediatric specialty care at pediatric
hospitals
• Develop a national health information network
– CHIC is ‘by definition’ a national network. CHIC sites will provide
technology diffusion and adoption opportunities across the country
• Coordinate federal health information systems
– Children’s institutions will share the same challenges connecting to
the federal health system and it will be cost effective to work through
these issues as a community versus independent basis
5
Personalize Care
NHII Goal III
ONCHIT Strategic Framework for Action
• Encourage use of personal health records
– Population-based testing such as newborn screening and
immunizations can be used as critical foundation for personal health
records
• Enhance informed consumer choice
– The relatively limited number of pediatric institutions in a market
enable more comprehensive data that may inform consumer
selection of physicians and institutions
• Promote use of telehealth systems
– Since children’s specialty hospitals are regional health centers and
there are limited numbers per market, the provisioning of
teleradiography or other telemedicine tools will be cost effectively
provided because infrastructure investment will be concentrated in
one or a few sites but service a large referral region
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Improve Population Health
NHII Goal IV
ONCHIT Strategic Framework for Action
– Unify public health surveillance architectures
• CHIC can provide guidance to participating institutions to
promote adoption of appropriate standards in cost effective way.
These standards will support connectivity to a national health
surveillance architecture
– Streamline quality and health status monitoring
• National Association of Children’s Hospitals and Related
Institutions (NACHRI) already collect data from 34 and 65
hospitals respectively for quality benchmarking
• CHIC can display a dashboard of national pediatric health status
indicators at any moment in time
– Accelerate research and dissemination of evidence
• CHIC will be an effective platform for clinical trials and promotion
of best practices
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Pediatric Health Care
• 85 million children
• 25% of USA population
• 180 children’s hospitals and related institutions
– Deliver approximately 40% - 50% of hospital care
• The pediatric health care market place is
– Very diverse with complex drivers across the landscape
– United in commitment to children
– ‘Manageable’ compared to the adult care environment and the rest
of the health care landscape
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The Children’s Health Information Infrastructure
Role in Innovation
RHIO
RHIO
CHIT may seed
RHIO efforts in other
cities
• New RHIO sites
• New ideas to existing
RHIO sites
Children’s
Hospitals
CHIT
Hospitals
RHIO
RHIO
RHIO = Vertical integration
Common element = geography, heterogeneous community in single geography
CHIT = Horizontal integration
Common element = children, homogeneous community across complex geography
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Technology is Moving Fast…
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Genomics and Bioinformatics
Exponential Growth
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Microprocessor Cost Per Transistor Cycle:
Exponential Change
12
Internet Hosts by Year
Exponential Growth
13
Magnetic Data Storage
Exponential Development of Capacity
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Law of Accelerating Returns
• ‘we won't experience 100 years of progress in the
21st century -- it will be more like 20,000 years of
progress (at today's rate)’
Ray Kurzweil, KurzweilAI.Net, March 07, 2001
•
The paradigm shift rate (i.e., the overall rate of technical progress) is currently doubling (approximately) every decade;
that is, paradigm shift times are halving every decade (and the rate of acceleration is itself growing exponentially). So,
the technological progress in the twenty-first century will be equivalent to what would require (in the linear view) on the
order of 200 centuries. In contrast, the twentieth century saw only about 20 years of progress (again at today's rate of
progress) since we have been speeding up to current rates. So the twenty-first century will see about a thousand times
greater technological change than its predecessor.
•
Published on Edge.org and KurzweilAI.net Jan. 12, 2003
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Sharing Data and Information:
No Problem?
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Technology is moving fast…
But where does this get us?
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Quality of Life Initiatives
Drive Children’s Health Information Infrastructure
• Program
• CDCs deliverable is health impact
• Program experts must set the health impact
agenda
• The health impact agenda drives the data
and information needs
• Process
• Informatics builds to support health impact
data and information needs
– Determine technical specifications
– Build systems and infrastructure
– Should be transparent
• Technology
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Informatics
Zone of Opportunity
P
P = Program area
Projects
I
C
I = Informatics
Infrastructure
C = Collaboration
Governance
Partnerships
Vision
Operations
Metrics
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Zone of Opportunity
Assumptions
•
•
•
•
Thousands of information dependent projects ongoing
Finite universe of data
Data is use neutral
Current projects are a reflection of the business objectives
of the stakeholders
• Leverage current projects to build infrastructure aligned
with priorities of stakeholders
20
Zone of Opportunity
Program Areas
Inform Clinical Practice
P
Clinical
Trials
EHR
Interconnect Clinicians
Hospital Network
AAP research network
I
Tele-health
Quality
C
CRO
e health
records
Personalize Care
Surveillance/Response
Improve Population Health
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Drivers vs. Work
• The universe of drivers for our pediatric community
is too complex to ‘manage’ against
• We need to respect the business decisions of our
stakeholder community
• We need to harness sustainable informatics
infrastructure contribution from each information
management activity
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Technology Standards….Are Not Enough!
?
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Expectations
We are all a node on the
network….
Nodes are diverse with
complex interactions of drivers
and challenges as well as
different capacities…
Successful public health
impact depends on
community…..
You Will Adopt!
Some issues include policy
support, budgets, capability,
planning, and implementation
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Innovations Portal
• An interactive web site that will:
–
–
–
–
–
–
–
Identify and build community
Document capacity
Document assets
Create a shared vision
Provide gap analysis and opportunity identification
Link quality and technology
Provide technology adoption progress tracking
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Pediatric Health Care Community:
Infrastructure Math
• Shared vision =
stakeholder(1) + stakeholder(2) + stakeholder(3) + …….
+ stakeholder(n)
• Total work =
work(1) + work (2) + work (3) + …. + work (n)
• Opportunity = Shared vision – Total work
• Do we have a shared vision?
• Is our work driving towards our vision?
• Are we maximizing our resources?
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Open Source Development
• Proven concept for software development
– Linux is excellent example
– Leverages large committed community
• Proven concept for infrastructure
– CETI project
• Leverages personal computers harnessing them
towards a common goal though each computer has
other diverse interests/purposes
27
Open Source Infrastructure Development
•
•
•
•
Community creates shared vision
Objectives are posted
Current activities are identified
Partnerships are encouraged to fulfill objectives
leveraging an integrated approach
• Resources are maximized by harnessing current
expenditures
28
Communities
Building Block I
• Local, city, state, regional, national, international
• Technology adoption occurs across communities
• Driven by communication and data/information
sharing desires/needs of the members/nodes of
the community
• Who are they…..get them together first
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Capacity
Building Block II
• Adoption of standards may enable communication
among nodes of a community
• Necessary for efficient communications and
data/information sharing but not sufficient
• What can they do….leverage what they have done
and migrate to future
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Assets
Building Block III
• Data, networks/relationships and memoranda of
understanding
• What do they have….leverage current assets to
progress program objectives
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Key Links Between Health Impact and
Technology
• What are the key health issues?
• What data is needed to manage these health
issues?
• What technical specifications, e.g. standards, are
needed to facilitate an interoperable network?
• Health impact must drive technology impact.
32
Examples of Usefulness
• Public health
– Support detection, containment, and treatment of infectious
diseases
– Unique in that it closes loop between surveillance and response
– Health care quality data resource
– Support surveillance for non-infectious diseases
– Promotes linkage of clinical and public health communities
• Academia
– Support clinical research activities
• Pharmaceuticals
–
–
–
–
–
Environment to facilitate clinical drug trials
Promotes pediatric drug dosing approval
Promote preparedness pediatric antidote
Adverse drug event monitoring
Monitor antibiotic resistance
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Examples of Usefulness
• Data exchange node
– Data aggregation and exchange executed according to memoranda of
understanding of participating institutions and governance activity
– Facilitates pediatric communities ability to adapt to evolving information
needs
• Communication node
– The network of relationships and the underlying technology that creates the
data exchange asset can be used for multi-directional communications
• Education
• Technology adoption activities
• Afferent pathway for hospital notifications
• Facilitate interface with public health community and other partners
• Standardized data exchange
– The networked community will provide collaborative support and expertise
to promote
• Standardized data exchange through education and capability
development for adoption of evolving standards
• Adoption of standards per Consolidated Health Informatics, Public
Health Informatics Network, National Health Information Infrastructure,
etc
34
Examples of Usefulness
• Electronic Health Records
– Promotion and leveraging of the EHR
• Enables effective resource management to protect and treat the
nation’s children
– Enable resourcing of hard goods, pharmaceuticals, staff etc during a
nationwide event by accessing inventory of such across all pediatric
institutions
• Children’s advocacy
– A nationwide network of all children’s hospitals will be an asset
demonstrating the pediatric communities ability to collaborate in the interest
of our nation’s children
– May be leveraged to address many children’s health care challenges
• Creation of strategic information resource
– Platform to organize increasing disparate data activities
• Training
– Utilization of network to promote best practice development and adoption
• Quality programs, response, etc
35
Examples of Usefulness
• Promote adoption of technologies, methodologies, and
applications
• Provides a live-lab to conduct important informatics systems
research
– Current state of technology and connectedness
– Technology adoption rates for specific technologies and
applications
• Perhaps most uniquely….
The attribute of ‘being national’ and crossing borders
enables CHIC to seed ideas from one RHIO area to others
36
Got Standards, an EHR, and a….
Innovative collaboration….
leading to....
…community
with a
technology
adoption
plan
Collaborative innovation
37
Think About….
• Pioneers establishing the information infrastructure
to support quality driven health care
Innovative collaboration….
Leading to....
Collaborative innovation
38
It is Sometimes Necessary to
State the Obvious
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