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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.

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New Urgency Exists New Urgency Exists for Privacy Rulesfor Privacy Rules

New Urgency Exists New Urgency Exists for Privacy Rulesfor Privacy Rules

Rise in managed careNew information and communications

technologyConcerns raised by mapping of the

human genomeIncreased demand for health dataCommercial use of health data

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Do You Know Where Your Medical Information Goes?

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Secondary Users of Secondary Users of Health Care Health Care InformationInformation

Secondary Users of Secondary Users of Health Care Health Care InformationInformation

Drug Marketers

Public Assistance Programs

Law Enforcement Agencies

Courts

Private Database Companies such as Medical Information Bureau

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Lack of TrustLack of TrustLack of TrustLack 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

33%

67%

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Fear is Justified:Fear is Justified:Improper DisclosuresImproper Disclosures

Fear is Justified:Fear is Justified:Improper DisclosuresImproper 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

20%

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Fear is Justified:Fear is Justified:Access by EmployersAccess by Employers

Fear is Justified:Fear is Justified:Access by EmployersAccess by EmployersIn 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)

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Consumer AnxietyConsumer AnxietyConsumer AnxietyConsumer 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

17%

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Privacy-protective Privacy-protective BehaviorsBehaviors

Privacy-protective Privacy-protective BehaviorsBehaviors

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

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The question remains:

“When all is said When all is said and done, will our and done, will our

health care health care records be used to records be used to heal us or reveal heal us or reveal

us?”us?”

(Donna Shalala, U.S. Secretary of Health and Human Services)

The question remains:

“When all is said When all is said and done, will our and done, will our

health care health care records be used to records be used to heal us or reveal heal us or reveal

us?”us?”

(Donna Shalala, U.S. Secretary of Health and Human Services)

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The Challenge that we face

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”

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The Challenge that we face

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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Concern about quality of Health Care in Future

23%

25%

18%

32%

2%

Very worriedSomewhatNot tooNot at all?

Kaiser Family Foundation Nov-Dec 2000

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Gov Regulation of Health Care

5%

62%

19%

14%

too muchnot enoughabout right?

Kaiser Family Foundation Nov-Dec 2000

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Physician Computer UsagePhysician Computer Usage

42

20

4137

7570

0

10

20

30

40

50

60

70

80

1997 1999 2000

Computer usersWeb users3-D Column 3

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Top Physician UsesTop Physician Uses

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

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19

20

21

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Health Insurance Portability and

Accountability Act 1996

Health Insurance Portability and

Accountability Act 1996PUBLIC LAW 104-191Title II Subtitle FIt 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

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The Core Business of Health

The Core Business of Health

Staying HealthyGetting BetterLiving with Illness

Foundation for Accountability

The best outcomes occurWhen

THE RIGHT DECISIONS ARE MADE AT THE

RIGHT TIME

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NHIINHII

THE GOAL IS TO PUSH KNOWLEDGE TO THE POINT OF SERVICE (CONTACT)

EXPERT SYSTEMSDECISION SUPPORTPRACTICE GUIDELINES

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HIPPOCRATESHIPPOCRATES

NOTED THAT IF YOU WANTED TO KNOW ABOUT THE HEALTH OF A PEOPLES NOTE

THE WINDS AND THE CHARACTER OF THE AIRTHE WATER AND THAT THEY DRINKTHE LAY OF THE LANDTHE HABITS OF THE PEOPLE

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Social EnvironmentIndividual

ResponseBehaviorBiology

PhysicalEnvironment

Genetic Endowment

Health &Function Disease

Health Care

Well-being Prosperity

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HEALTHHEALTH

SHARED RESPONSIBILITY HEALTH CAREPUBLIC HEALTHBUSINESSFAITH COMMUNITYOTHERS

-IOM 1997 IMPROVING HEALTH IN THE COMMUNITY-A ROLE FOR PERFORMANCE MONITORING

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Overview of PMRI Dimensions

Overview of PMRI Dimensions

Interoperability

Data

Quality

Comparability

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HL7 &

DICOM HL7 & ASTM

HL7

HL7

ASTM

& HL7

IEEE

PMRIPMRI

Laboratories

ASC

X12N &

NCPDP

NCPDP &

ASC X12N

NCPDP &

X12N

Radiology

Hospital

Pharmacy

Knowledge

bases

Physiological

monitors

Medical

devicesBedside

computer

Patient

Registration/

Admissions

Billing

Clinical

content

Orders

&

results

Community

Pharmacies

Pharmacy

Benefits Mgrs

Payers

HL7

HL7

&

ASTM

HL7

IEEE

(Adapted from Electronic Health Records: Changing the Vision, Eds. GF Murphy,MA Hanken, and KA Waters. Philadelphia: W. B. Saunders Company, 1999)

InteroperabilityInteroperability

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ComparabilityComparability

ConvergenceSNOMED 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 UMLS Metathesaurus as of March 1, 2000

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PMRI & Health Information Infrastructure

PMRI & Health Information Infrastructure

PMRI

ProviderProvider

PopulationPopulation

PersonPerson

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Data Standards are not enough!

Data Standards are not enough!

Push Knowledge to the Point of ServiceStructured Terminology leads to standard dataStandard data enables order entry systemsStandard data enables decisional support

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NHIINHII

COMMUNITY

CAREGIVERPERSONAL

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Vision of the NHIIVision 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.

The best outcomes occurWhen

THE RIGHT DECISIONS ARE MADE AT THE

RIGHT TIME

NCVHS Web Site for National Health

Information Infrastructure

www.ncvhs.hhs.gov

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Vision of the NHIIVision 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.