1. 1 Standards Compliant? Give Me Your Data? What Community of Practice Do You Belong To? Now we know why cats dont like to be herded!

2. 2 Childrens Health Impact Guiding Technology Dale Nordenberg, MD June 25, 2005 Child Health Services Research Meeting Lead - Childrens 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. 3 Childrens Health Information Infrastructure and Collaborative The Childrens Health Information Collaborative will provide a forum, structure and process for child health care stakeholders that will promote the development of a childrens 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 childrens health information infrastructure

4. 4 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 childrens center for collaborative management of complex pediatric patients

5. 5 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 –Childrens 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. 6 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 childrens 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. 7 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 Childrens 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. 8 Pediatric Health Care 85 million children 25% of USA population 180 childrens 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. 9 The Childrens Health Information Infrastructure Role in Innovation RHIO = Vertical integration Common element = geography, heterogeneous community in single geography CHIT = Horizontal integration Common element = children, homogeneous community across complex geography Childrens Hospitals Hospitals CHIT may seed RHIO efforts in other cities New RHIO sites New ideas to existing RHIO sites CHIT RHIO

10. 10 Technology is Moving Fast…

11. 11 Genomics and Bioinformatics Exponential Growth

12. 12 Microprocessor Cost Per Transistor Cycle: Exponential Change

13. 13 Internet Hosts by Year Exponential Growth

14. 14 Magnetic Data Storage Exponential Development of Capacity

15. 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.linear Published on Edge.org and KurzweilAI.net Jan. 12, 2003 Ray Kurzweil, KurzweilAI.Net, March 07, 2001

16. 16 Sharing Data and Information: No Problem?

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

18. 18 Quality of Life Initiatives Drive Childrens 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

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

20. 20 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

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

22. 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. 23 Technology Standards….Are Not Enough! ?

24. 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. 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. 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. 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. 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. 29 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

30. 30 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

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

32. 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. 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. 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. 35 Examples of Usefulness Electronic Health Records –Promotion and leveraging of the EHR Enables effective resource management to protect and treat the nations children –Enable resourcing of hard goods, pharmaceuticals, staff etc during a nationwide event by accessing inventory of such across all pediatric institutions Childrens advocacy –A nationwide network of all childrens hospitals will be an asset demonstrating the pediatric communities ability to collaborate in the interest of our nations children –May be leveraged to address many childrens 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. 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. 37 Got Standards, an EHR, and a…. …community with a technology adoption plan Innovative collaboration…. leading to.... Collaborative innovation

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

39. 39 It is Sometimes Necessary to State the Obvious