Standards & Vocabulary

1. Standards & Vocabulary

2. Standards in Informatics • Why use standards? • Exchange data and share information efficiently (HIE within RHIOs/NHIN) • Correctly interpret data (Males=1 or 0) • Improve data quality (Allows for easy grouping) • Collaboration opportunities (Multi-state outbreaks) • Handle more complex information (Laboratory reports) Public Health Informatics: An Overview of Key Issues

3. Standards in Informatics • Everyone benefits from a common approach to representing and exchanging public health data • Those who collect it from outside sources • Those who enter it into electronic format • Those who analyze it • Those who verify the findings • Those that communicate the information for public health interventions Public Health Informatics: An Overview of Key Issues

4. A Figure of Speech… • Conversation • Vocabulary • The words you choose to use • Content standards • Grammar • The way you put the words together • Format standards • Context • The environment where you have the conversation • Software, hardware, and resources required for data exchange Public Health Informatics: An Overview of Key Issues

5. Vocabulary • Big tables of codes that describe things • Numbers as county codes (FIPS) • Reportable diseases as numbered codes • ICD-9, ICD-9 CM, ICD-10 codes for underlying cause of death • Vocabularies can be: • Locally-defined vs universally-defined • Lumpers vs splitters Public Health Informatics: An Overview of Key Issues

6. Vocabulary Examples • LOINC-Logical Observation Identifiers Names and Codes(www.regenstrief.org/loinc) • Developed for billing purposes in early 1990s • Gathers concepts into a single code • “13951-9” = “Serum EIA for Hep A Antibody” • PHIN standard for reportable disease test requests • Codes not assigned in systematic or hierarchical way – the actual number is meaningless Public Health Informatics: An Overview of Key Issues

7. Vocabulary Examples • SNOMED CT-Systematized Nomenclature of Medicine Clinical Terms (www.snomed.org) • Pathologist developed – mid – 1960s • Teases out concepts into atomic elements • “Enzyme immunoassay”, “Serum”, “Hepatitis A Virus”, “Antibody” • PHIN standard for reportable disease test results Public Health Informatics: An Overview of Key Issues

8. Vocabulary Examples - UMLS • UMLS - Unified Medical Language System (1994-present) (http://www.nlm.nih.gov/research/umls/) • Goal: To integrate systems by allowing the mapping of concepts to different standardized vocabularies and the development of vocabularies in biomedicine and health that have not been previously developed Public Health Informatics: An Overview of Key Issues

9. Vocabulary Examples - UMLS • Metathesaurus - Very large, multi-purpose, and multi-lingual vocabulary database that links all included vocabularies • Lexicon – A dictionary-like database organized by concept or meaning with attributes that help to define its meaning • Semantic Network – A database of biomedical and health related concepts, their various names, and the relationships among them Public Health Informatics: An Overview of Key Issues

10. Grammar • The way you put words together is important • “The disinfectant is contaminated with blood” • “The blood is contaminated with disinfectant” • Critical in Natural Language Processing (NLP) • Can be: • Storage (database) or Message (transmissions from one database to another over a network) • Flat files or Relational databases Public Health Informatics: An Overview of Key Issues

11. Grammar Examples • Storage: comma-delimited, tab-delimited, MS Access, SAS • Message: HL7-Health Level Seven (www.hl7.org) • Clinical and administrative data • Standardizes format and protocol • Defines the sequence in the message for data elements as well as the data type • Currently implemented in immunization and cancer registries, emergency department reporting, and lab reporting Public Health Informatics: An Overview of Key Issues

12. Grammar Example • HL7 allows multiple patients per message, multiple orders per patient, multiple tests per order, multiple results per test, etc. MSH|^~\&||LABMED-SOUTHWEST^68D089677^CLIA|… PID|1||78893565||DOE^JOHN||490 Elm St^Phoenix^AZ OBR|1||05099409000|220738^STD SCREEN^L|… OBX|1|CE|5292-8^RPR-SYPHILIS^LN||G-A200^POSITIVE^SNM| OBX|2|CE|6487-3^GONNORRHEA ANTIGEN^LN||G-A201^NEGATIVE OBX|3|CE|14468-3^CHLAMYDIA ANTIGEN^LN||G-A201^NEGATIVE Public Health Informatics: An Overview of Key Issues

13. Context • Along with the vocabulary and format, there needs to be an infrastructure to support the data exchange • Data model • Communication (business rules, protocols, etc.) • Security software • Support staff • Standard approaches to implementation of interoperable systems are needed Public Health Informatics: An Overview of Key Issues

14. Context Example • What it the NHIN? Public Health Informatics: An Overview of Key Issues

15. Nationwide Health Information Network • Nationwide “system” • Interoperable Exchange of Data, Information, Knowledge (ultimately) • Secure • Containing multiple Regional Health Information Organizations (RHIOs) Public Health Informatics: An Overview of Key Issues

16. NHIN - RHIOs • RHIOs – at the regional / local level • Provide: • Leadership • Oversight • Governance • Funding Coordination Public Health Informatics: An Overview of Key Issues

17. NHIN • Overall Issues that must be (are) being addressed: • Organization and Business Framework • Privacy and Security • Legal Issues • Management and Operational Considerations • Standards and Policies to Achieve Interoperability Public Health Informatics: An Overview of Key Issues

18. Privacy, Security & Confidentiality

19. Background • Technology versus people/practices? • Technology • Always a moving target • Excellent track record overall • People • Human errors in judgment • Social engineering • Lack of standardization in laws across states • Good record in public health Public Health Informatics: An Overview of Key Issues

20. NHIN Privacy & Security Project • AHRQ, ONC (HIT) collaborative initiative with 34 states/territories • Goals: • Identify both best practices and challenges • Develop consensus-based solutions for interoperable electronic health information exchange (HIE) that protect the privacy and security of health information, and • Develop detailed implementation plans to implement solutions. • Nationwide report due early summer 2007 Public Health Informatics: An Overview of Key Issues

21. HIPAA • Health Insurance Portability and Accountability Act (1996) (www.hipaa.org) • Improved efficiency and effectiveness of healthcare through standardization of shared electronic information including financial and administrative data • Improved privacy of personal information • Public health exemption Public Health Informatics: An Overview of Key Issues

22. HIPAA • Two rules: • Security rule • Need for hardware security, access security, and transmission security • Privacy rule • Need for de-identified data to provide for patients’ privacy of personal information Public Health Informatics: An Overview of Key Issues

23. HIPAA • Personal identifiers that cannot be included in shared data: • Names, address, zip codes • Telephone numbers, Fax numbers, Email addresses • Birth date, admission date, discharge date, date of death, age • Social security numbers • Medical record numbers, Health plan beneficiary numbers • Account numbers, Certificate/license numbers • License plate numbers • Device identifiers and serial numbers • Web URL, IP address numbers • Biometric identifiers • Full face photographic images • Any other unique identifying number, characteristic, or code Public Health Informatics: An Overview of Key Issues