Standards Compliant? Give Me Your Data? What Community of Practice Do You Belong To?

1. 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!

2. 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

3. 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

4. Inform Clinical PracticeNHII Goal IONCHIT 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

5. Interconnect CliniciansNHII 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

6. Personalize CareNHII 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

7. Improve Population HealthNHII 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

8. 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

9. The Children’s Health Information InfrastructureRole 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

10. Technology is Moving Fast…

11. Genomics and BioinformaticsExponential Growth

12. Microprocessor Cost Per Transistor Cycle:Exponential Change

13. Internet Hosts by YearExponential Growth

14. Magnetic Data StorageExponential Development of Capacity

15. 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

16. Sharing Data and Information: No Problem?

17. Technology is moving fast…But where does this get us?

18. 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 Quality of Life InitiativesDrive Children’s Health Information Infrastructure

19. Informatics Zone of Opportunity P P = Program area Projects I = Informatics Infrastructure C = Collaboration Governance Partnerships Vision Operations Metrics I C

20. 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

21. Zone of OpportunityProgram Areas P Inform Clinical Practice Interconnect Clinicians Clinical Trials Hospital Network AAP research network EHR I Tele-health Quality C CRO e health records Surveillance/Response Personalize Care Improve Population Health

22. 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

23. Technology Standards….Are Not Enough!?

24. 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 implementation You Will Adopt!

25. 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

26. 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?

27. 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

28. 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

29. 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

30. 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

31. AssetsBuilding Block III • Data, networks/relationships and memoranda of understanding • What do they have….leverage current assets to progress program objectives

32. 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.

33. 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

34. 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

35. 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

36. 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

37. Got Standards, an EHR, and a…. Innovative collaboration…. leading to.... Collaborative innovation …community with a technology adoption plan

38. Think About…. • Pioneers establishing the information infrastructure to support quality driven health care Innovative collaboration…. Leading to.... Collaborative innovation

39. It is Sometimes Necessary to State the Obvious