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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. New Urgency Exists for Privacy Rules. Rise in managed care

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Presentation Transcript
slide1
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.
new urgency exists for privacy rules
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
secondary users of health care information
Secondary Users of Health Care Information
  • Drug Marketers
  • Public Assistance Programs
  • Law Enforcement Agencies
  • Courts
  • Private Database Companies such as Medical Information Bureau
lack of trust
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

fear is justified improper disclosures
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
fear is justified access by employers
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)

consumer anxiety
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

privacy protective behaviors
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
slide10

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)

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”
the challenge that we face1
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
top physician uses
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
health insurance portability and accountability act 1996
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
the core business of health
The Core Business of Health
  • Staying Healthy
  • Getting Better
  • Living with Illness
      • Foundation for Accountability
slide26
NHII
  • THE GOAL IS TO PUSH KNOWLEDGE TO THE POINT OF SERVICE (CONTACT)
    • EXPERT SYSTEMS
    • DECISION SUPPORT
    • PRACTICE GUIDELINES
hippocrates
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
slide28

Social

Environment

Physical

Environment

Genetic

Endowment

Individual

Response

Behavior

Biology

Health &

Function

Disease

Health

Care

Well-being

Prosperity

health
HEALTH
  • SHARED RESPONSIBILITY
    • HEALTH CARE
    • PUBLIC HEALTH
    • BUSINESS
    • FAITH COMMUNITY
    • OTHERS
      • -IOM 1997 IMPROVING HEALTH IN THE COMMUNITY-A ROLE FOR PERFORMANCE MONITORING
overview of pmri dimensions

Comparability

Interoperability

Data

Quality

Overview of PMRI Dimensions
interoperability

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
comparability

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
data standards are not enough
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
slide35
NHII

CAREGIVER

PERSONAL

COMMUNITY

vision of the nhii
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.
ncvhs web site for national health information infrastructure

NCVHS Web Site for National Health Information Infrastructure

www.ncvhs.hhs.gov

vision of the nhii1
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.