1. EXPLORING INFORMATION SHARING AT HHS A rchitecturePlus Seminar American Institute of Architects, Washington, DC March 6, 2007 John Teeter, Chief Enterprise Architect, Department of Health and Human Services

2. AGENDA  Introduction to the HHS Information Sharing Approach  Explore a few examples of the different data sharing efforts and activities currently taking place across the department  Data governance - How HHS is strengthening it to make sure it is effective at the project level  Lessons Learned and Best Practices  Conclusion 1

3. Introduction To The HHS Information Sharing Approach  The HHS culture has embraced the need to share health information, which was evident from our strategic planning workshops  A federated model is in place at HHS to allow for focus on the disparate missions across the department  Across the federated model, HHS maintains a functional view that is represented by communities of interests that we refer to as segments  The focus of this presentation is on information sharing within and across those communities of interest 2

4. Exploring HHS Data Sharing Exploring HHS Data Sharing 3 HHS Federated Enterprise Data Sharing Initiatives Internal and External Stakeholders Researchers State Govt. Local Govt. Federal Agencies Tribes Public & Private Healthcare Communities Private Payers

5. Health IT Data Sharing Initiatives American Health Information Community (AHIC) Formed workgroups in 2006 that will make recommendations to the AHIC in the following areas: The Confidentiality, Privacy and Security Workgroup – To address privacy and security policy issues for nationwide use of health IT Privacy and Security across State Lines - To ensure that every patient’s privacy is consistently protected no matter where they receive care, a regular forum will convene state leaders to reach consensus on cross-border issues of privacy, security, physician licensure and health-care practice, and the states’ roles in health information exchange. In addition, a nation-wide summary of state privacy and security assessments, solutions, and implementation plans will be presented and used to consider national policy issues Link http://www.hhs.gov/healthit/ahic Federal Health Architecture LoB (FHA) Link http://www.hhs.gov/fedhealtharch/index.html ONC AHIC FHA Nationwide Health Information Network (NHIN) HITSP CHI 4

6. Health IT Data Sharing Initiatives (cont.) Nationwide Health Information Network (NHIN) Four prototype architectures for a Nationwide Health Information Network were delivered in January, 2007 These prototypes were developed with functional requirements and security and business models for health information exchange Their delivery marks the beginning of the next phase of NHIN work – to connect the prototypes and state and regional health information exchange efforts in “trial implementations” that will make up the “networks of networks” of the NHIN Link http://www.hhs.gov/healthit/NHINdemos.html ONC AHIC FHA Nationwide Health Information Network (NHIN) HITSP CHI 5 HITSP (Health Information Technology Standards Panel) Standards Adoption Link http://www.hhs.gov/healthit/privacy/ CHI (Consolidated Health Informatics) Link http://www.hhs.gov/healthit/chiinitiative.html

7. HHS Data Sharing Initiatives HHS HHS Data Council Gateway to Data & Statistics HHS Data Finder Meta Dictionary of HHS Data Resources HHS Department Wide Search Engine Research Data Centers HHS Data Council Gateway to Data & Statistics This web-based tool brings together key health and human services data and statistics It is designed to complement other government resources such as FirstGov and FedStats The Gateway covers federal, state and local government sponsored information Link http://www.hhs-stat.net/ HHS Data Finder Provides access to health and human services related data and statistics resources supported by the Department of Health and Human Services, other federal agencies, states, and local Governments It contains a search engine and a categorized set of topic areas Link http://www.hhs-stat.net/scripts/datafinder.cfm Meta Directory of HHS Data Resources This site contains descriptions and links for virtually all the statistical and surveillance systems supported by HHS agencies Link http://aspe.hhs.gov/datacncl/datadir/index.shtml 6

8. HHS Data Sharing Initiatives (cont.) HHS HHS Data Council Gateway to Data & Statistics HHS Data Finder Meta Dictionary of HHS Data Resources HHS Department Wide Search Engine Research Data Centers HHS Department Wide Search Engine HHS adopted an industry-standard search engine, a Google Search Appliance, to provide an HHS-wide internet search of all Departmental public web sites. Link http://www.hhs.gov 7 Links SAMHSA http://www. Samhsa.gov AHRQ http://www.ahrq.gov CDC NCHS http://www.cdc.gov/nchs/about.htm

9. Population Health Management Data Sharing Initiatives CDC- Wonder Database Search & Query Site Provides a single point of access to a wide variety of reports and numeric public health data Capabilities include querying numeric data sets on CDC’s mainframe and other computers via fill-in-blank web pages Public-use data sets about mortality (deaths), cancer incidence, HIV and AIDS, behavioral risk factors, diabetes, natality (births), census data and many other topics are available for query, and the requested data are readily summarized and analyzed Link http://wonder.cdc.gov/Welcome.html CDC Wonder Database Search & Query Site Public Health Information Network (PHIN) Faststats National Center for Health Statistics (NCHS) 8

10. Population Health Management Data Sharing Initiatives (cont.) CDC Wonder Database Search & Query Site Public Health Information Network (PHIN) Faststats National Center for Health Statistics (NCHS) 9

11. Population Health Management Data Sharing Initiatives (cont.) CDC- National Center for Health Statistics (NCHS) NCHS compiles statistical information to guide actions and policies to improve the health of our people. NCHS collects data from birth and death records, medical records, interview surveys, and through direct physical exams and laboratory testing The NCHS website includes an overview of major data collection activities, data links are provided to publications that include the statistics presented, to sources of more findings, and provide information about special activities and initiatives to improve access to and the quality of health statistics information Link http://www.cdc.gov/nchs/ CDC Wonder Database Search & Query Site Public Health Information Network (PHIN) Faststats National Center for Health Statistics (NCHS) 10

12. Consumer Safety Data Sharing Initiatives FDA Databases This site provides the capability to search the contents of a number of databases maintained by the FDA Link http://www.fda.gov/search/databases.html FDA -Data Reference Model (DRM) Adoption FDA is one of the leaders within HHS in adopting the DRM The FDA DRM identifies 8 different data areas/categories. It consist of a logically group data class inventory with descriptions and identifies information exchange packages Link www.fda.gov FDA FDA Databases DRM Adoption Food Safety Workgroup 11 FHA Food Safety Workgroup (Led by FDA & USDA) Published common business processes, data assets and information exchange packages in OMB’s Federal Transition Framework (FTF) Link http://www.whitehouse.gov/omb/egov/a-2-EAFTF.html

13. Health Care Administration Data Sharing Initiatives CMS- Integrated Data Repository (IDR) A centralized, scalable, enterprise-wide repository for the Agency’s health care. It will enable comprehensive reporting, research, and analysis by CMS and the research community It will also provide CMS the capability to share Medicare and Medicaid data within the enterprise and with CMS partners as appropriate Link http://www.cms.gov CMS- Research and Statistical Data Website Provides access to health and human services related data and statistics resources supported by the Department of Health and Human Services, other federal agencies, states, and local governments Contains a search engine and a categorized set of topic areas Link http://www.cms.hhs.hhs.gov/home/rsds.asp CMS Integrated Data Repository (IDR) Research & Statistical Data Website 12

14. Health Care Research Data Sharing Initiatives NIH- National Cancer Institute – Cancer Biomedical Informatics Grid (caBIG) caBig is an informatics platform that is open to all who wish to use it, and completely voluntarily in nature Based on common standards, and built by members of the cancer research community, caBIG links institutions, organizations and individuals together in a manner that promises to accelerate progress in all aspects of cancer research – from etiologic research to prevention, early detection and treatment Link https://www.nih.gov NIH -National Library of Medicine (NLM) The NLM Gateway allows users to search online in multiple retrieval systems at the National Library of Medicine (NLM), including MEDLINE/PubMed, MedlinePlus, and ClinicalTrials.gov Link http://www.nlm.gov NIH National Cancer Institute – ca BIG National Library of Medicine (NLM) 13

15. Data Governance at HHS Data Governance Organizations Management & Decision Making HHS DATA COUNCIL HHS DATA ARCHITECTURE WORKING GROUP (DAWG) BUSINESSTECHNICAL HHS Data Council The HHS Data council coordinates all health and human services data collection and analysis activities of the Department of Health and Human Services, including an integrated data collection strategy, coordination of health data standards and health and human services and privacy policy activities. Link https://aspe.hhs.gov/datacncl/index.shtml 14 HHS Data Architecture Working Group (DAWG) Link http://www. hhs.gov/ocio/ea/working/proworkgroups.html

16. Data Governance at HHS (cont.) Data Governance Organizations Management & Decision Making HHS DATA COUNCIL HHS DATA ARCHITECTURE WORKING GROUP (DAWG) BUSINESSTECHNICAL Enterprise Performance Life Cycle The EPLC is a performance-driven framework that provides a consistent, effective and evolving project management methodology to guide IT investment management at HHS. The integrated EPLC processes include procedures to ensure that HHS investments comply with applicable data standards. The EPLC supports HHS Information Technology investment management and governance processes by providing a framework through which the processes and activities of critical partners are integrated and coordinated to ensure more effective and efficient planning, development, maintenance, and management of IT investments using an enterprise approach. 15

17. Lessons Learned and Best Practices Seek consensus with external partners Reach agreement on the high-level concepts Seek to adopt existing industry standards before developing new standards COIs may have specific requirements but core concepts will extend across COIs Harmonize data semantics Data is an enterprise asset and should be managed as such Emphasize the importance of privacy and confidentiality early There are both technical and policy impediments to data sharing, both need to evolve Accept wrestling with terminology standards and data mapping, especially during transitions Use ontologies to manage the complexities and relationships of data concepts Focus on sharing the most critical information first 16

18. Exploring HHS Data Sharing Exploring HHS Data Sharing 18 HHS Federated Enterprise Data Sharing Initiatives Internal and External Stakeholders Researchers State Govt. Local Govt. Federal Agencies Tribes Public & Private Healthcare Communities Private Payers

19. Conclusion To learn more about HHS data sharing initiatives, contact: John Teeter, HHS Chief Enterprise Architect John.Teeter@HHS.GOV (202) 690-6162 19 BEGIN WITH THE END IN MIND!