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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!

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Children’s Health Impact Guiding Technology

Dale Nordenberg, MD

June 25, 2005Child Health Services Research Meeting

Lead - Children’s Health Information Technology AgendaOffice of the National Coordinator of Health Information Technology

And Associate Director (Informatics) & Chief Information Officer

National Center for Infectious DiseasesCenters for Disease Control

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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

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Inform Clinical PracticeNHII 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

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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

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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 InfrastructureRole in Innovation

RHIO = Vertical integrationCommon element = geography, heterogeneous community in single geography

CHIT = Horizontal integrationCommon element = children, homogeneous community across complex geography

Children’s Hospitals

Hospitals

CHIT may seed RHIO efforts in othercities • New RHIO sites• New ideas to existing RHIO sites

CHIT

RHIO RHIO

RHIO RHIO

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Technology is Moving Fast…

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Genomics and BioinformaticsExponential Growth

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Microprocessor Cost Per Transistor Cycle:Exponential Change

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Internet Hosts by YearExponential Growth

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Magnetic Data StorageExponential 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)’

• 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

Ray Kurzweil, KurzweilAI.Net, March 07, 2001

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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 InitiativesDrive Children’s Health Information Infrastructure

• CDCs deliverable is health impact

• Program experts must set the health impact agenda

• The health impact agenda drives the data and information needs

• Informatics builds to support health impact data and information needs– Determine technical specifications– Build systems and infrastructure– Should be transparent

• Program

• Process

• Technology

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Informatics Zone of Opportunity

C

P = Program area Projects

I = InformaticsInfrastructure

C = CollaborationGovernancePartnershipsVision OperationsMetrics

I

P

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Zone of OpportunityAssumptions

• 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

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Zone of OpportunityProgram Areas

C

I

Quality

Surveillance/Response

CRO

e healthrecords

Inform Clinical Practice Interconnect Clinicians

Personalize Care Improve Population Health

EHR

ClinicalTrials

P

Tele-health

Hospital Network

AAP research network

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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…..

Some issues include policy support, budgets, capability, planning, and implementationYou Will Adopt!

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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

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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

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CommunitiesBuilding 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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CapacityBuilding 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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AssetsBuilding 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.

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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

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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

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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

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Got Standards, an EHR, and a….

…community with a

technologyadoption

plan

Innovative collaboration….

leading to....

Collaborative innovation

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Think About….

• Pioneers establishing the information infrastructure to support quality driven health care

Innovative collaboration….

Leading to....

Collaborative innovation

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It is Sometimes Necessary to State the Obvious