New Urgency Exists for Privacy Rules

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. 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. Do You Know Where Your Medical Information Goes?

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. Lack of Trust Only a thirdof 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. Fear is Justified:Improper Disclosures One in fiveAmerican 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, January1999

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

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. 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. 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. 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

14. Kaiser Family Foundation Nov-Dec 2000

15. Kaiser Family Foundation Nov-Dec 2000

16. Physician Computer Usage

17. Top Physician Uses • 1997 1999 2000 • Non Pt E-mail 91 91 96 • Med Inf Source 83 84 86 • Travel Info 72 80 85 • Product Info 65 76 77 • Association 59 66 68 • Conf Info 45 52 61 • Prchse Prod&Ser 38 66 70 • Shopping 33 58 66 • Finacial (Brooker) 19 27 35

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

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

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

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

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. Comparability Interoperability Data Quality Overview of PMRI Dimensions

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

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

33. Provider Person PMRI Population PMRI & Health Information Infrastructure

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. NHII CAREGIVER PERSONAL COMMUNITY

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 occurWhen THE RIGHT DECISIONS ARE MADE AT THE RIGHT TIME

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

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.