1. 1 The Health Privacy Project is dedicated to raising public awareness of the importance of ensuring health privacy in order to improve health care access and quality, for individuals and their communities.

2. 2 New Urgency Exists for Privacy Rules  Rise in managed care  New information and communications technology  Concerns raised by mapping of the human genome  Increased demand for health data  Commercial use of health data

3. 3 Do You Know Where Your Medical Information Goes?

4. 4 Secondary Users of Health Care Information  Drug Marketers  Public Assistance Programs  Law Enforcement Agencies  Courts  Private Database Companies such as Medical Information Bureau

5. 5 Lack of Trust Only a third of U.S. adults say they trust health plans and government programs to maintain confidentiality all or most of the time. California HealthCare Foundation, national poll, January 1999

6. 6 Fear is Justified: Improper Disclosures One in five American adults believe that a health care provider, insurance plan, government agency, or employer has improperly disclosed personal medical information. Half of these people say it resulted in personal embarrassment or harm.  Health Privacy Project 1999, California HealthCare Foundation, national poll, January 1999

7. 7 Fear is Justified: Access by Employers In a recent survey of Fortune 500 companies, only 38% responded that they do not use or disclose employee health information for employment decisions. (Report prepared for Rep. Henry A. Waxman by Minority Staff Special Investigations Division Committee on Government Reform, U.S. House of Representatives April 6, 2000)

8. 8 Consumer Anxiety One in six American adults say they have done something out of the ordinary to keep medical information confidential. California HealthCare Foundation, national poll, January 1999

9. 9 Privacy-protective Behaviors  Paying out-of-pocket  Doctor-hopping  Giving inaccurate or incomplete information  Asking a doctor not to write down certain health information or to record a less serious or embarrassing condition  Avoiding care altogether

10. 10 When all is said and done, will our health care records be used to heal us or reveal us?” The question remains: “When all is said and done, will our health care records be used to heal us or reveal us?” (Donna Shalala, U.S. Secretary of Health and Human Services)

11. 11 The Challenge that we face  “THE MANAGED-CARE-BASED HEALTH SYSTEM IS FAILING. MEDICAL INFLATION IS BACK. CONSUMER DISTRUST, PROVIDER HOSTILITY, COSTLY NEW TECHNOLOGIES AND POLITICAL OPPORTUNISM WILL NO LONGER ALLOW COSTS AND QUALITY TO BE CONTROLLED BY MOST EXISTING MANAGED CARE ARRANGEMENTS”

12. 12 The Challenge that we face  “OVERALL, QUALITY HAS NOT BEEN DELETERIOUSLY AFFECTED BY MANAGED CARE, BUT MANAGED CARE HAS NOT SUBSTANTIALLY REDUCED UNSAFE PRACTICES, OVERUSE, UNDERUSE AND MISUSE OF HEALTH CARE” - PAUL ELLWOOD

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14. 14 Kaiser Family Foundation Nov-Dec 2000

15. 15 Kaiser Family Foundation Nov-Dec 2000

16. 16 Physician Computer Usage

17. 17 Top Physician Uses  199719992000  Non Pt E-mail919196  Med Inf Source838486  Travel Info728085  Product Info657677  Association596668  Conf Info455261  Prchse Prod&Ser386670  Shopping335866  Finacial (Brooker)192735

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23. 23 Health Insurance Portability and Accountability Act 1996  PUBLIC LAW 104-191  Title II Subtitle F  It is the purpose of this subtitle to improve the Medicare program under title XVIII of the Social Security Act, the Medicaid program under title XIX of such Act, and the efficiency and effectiveness of the health care system, by encouraging the development of a health information system through the establishment of standards and requirements for the electronic transmission of certain health information

24. 24 The Core Business of Health  Staying Healthy  Getting Better  Living with Illness  Foundation for Accountability

25. The best outcomes occur When THE RIGHT DECISIONS ARE MADE AT THE RIGHT TIME

26. 26 NHII  THE GOAL IS TO PUSH KNOWLEDGE TO THE POINT OF SERVICE (CONTACT)  EXPERT SYSTEMS  DECISION SUPPORT  PRACTICE GUIDELINES

27. 27 HIPPOCRATES  NOTED THAT IF YOU WANTED TO KNOW ABOUT THE HEALTH OF A PEOPLES NOTE  THE WINDS AND THE CHARACTER OF THE AIR  THE WATER AND THAT THEY DRINK  THE LAY OF THE LAND  THE HABITS OF THE PEOPLE

28. 28 Social Environment Individual Response Behavior Biology Physical Environment Genetic Endowment Health & Function Disease Health Care Well-beingProsperity

29. 29 HEALTH  SHARED RESPONSIBILITY  HEALTH CARE  PUBLIC HEALTH  BUSINESS  FAITH COMMUNITY  OTHERS  -IOM 1997 IMPROVING HEALTH IN THE COMMUNITY-A ROLE FOR PERFORMANCE MONITORING

30. 30 Overview of PMRI Dimensions Interoperability Data Quality Comparability

31. 31 HL7 & DICOM HL7 & ASTM HL7 ASTM & HL7 IEEE PMRI Laboratories ASC X12N & NCPDP NCPDP & ASC X12N NCPDP & X12N Radiology Hospital Pharmacy Knowledge bases Physiological monitors Medical devices Bedside computer Patient Registration/ Admissions Billing Clinical content Orders & results Community Pharmacies Pharmacy Benefits Mgrs Payers HL7 & ASTM HL7 IEEE Interoperability

32. 32 Comparability Convergence SNOMED RT/ NHS Clinical Terms Message Specific Codes DICOM NCPDP IEEE HL7* X12N Nursing Codes HHCC* NANDA* NIC* NMMDS NOC* OMAHA* PCDS* PNDS Drug Codes First Data Bank* Multum* NDC Diagnoses & Procedure Codes Alternative Link* CDT-2* CPT-4* HCPCS* ICD-9-CM/ICD-9-V3* ICD-10-CM* ICD-10-PCS ICIDH-2 Other Codes Health Language Center UMDNS (ECRI)* DEEDS UPN (HIBCC)/UPC (UCC) Clinically Specific Codes DSM* Gabrieli LOINC* MEDCIN MedDRA SNOMED V3* NHS Clinical Terms* * Fully or partially included in the UMLSMetathesaurus as of March 1, 2000

33. 33 PMRI & Health Information Infrastructure PMRI Provider Population Person

34. 34 Data Standards are not enough!  Push Knowledge to the Point of Service  Structured Terminology leads to standard data  Standard data enables order entry systems  Standard data enables decisional support

35. 35 NHII COMMUNITY CAREGIVER PERSONAL

36. 36 Vision of the NHII  The set of technologies, standards, applications, systems, values, and laws that support all facets of individual health, health care, and public health.  NOT a centralized database.  Connects distributed health information in the framework of a secure network with strict confidentiality protections.

37. The best outcomes occur When THE RIGHT DECISIONS ARE MADE AT THE RIGHT TIME

38. NCVHS Web Site for National Health Information Infrastructure www.ncvhs.hhs.gov

39. 39 Vision of the NHII  The set of technologies, standards, applications, systems, values, and laws that support all facets of individual health, health care, and public health.  NOT a centralized database.  Connects distributed health information in the framework of a secure network with strict confidentiality protections.