The Fair Health Information Practices Act of 1994 : hearings before the Information, Justice, Transportation, and Agriculture Subcommittee of the Committee on Government Operations, House of Representatives, One Hundred Third Congress, second session, on

700 Pages·1994·19.6 MB·English

by  United States. Congress. House. Committee on Government Operations. Information, Justice, Transportation, and Agriculture Subcommittee

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THE FAIR HEALTH INFORMATION PRACTICES
OF 1994
Y 4,9 74/7: H 34/13
The Fair Health Infornation Practic.
. .
n£.ARINGS
BEFORE THE
INFORMATION, JUSTICE, TRANSPORTATION,
AND AGRICULTURE SUBCOMMITTEE
OF THE
COMMITTEE ON
GOVERNMENT OPERATIONS
HOUSE OF REPRESENTATIVES
ONE HUNDRED THIRD CONGRESS
SECOND SESSION
ON
H.R. 4077
TO ESTABLISH A CODE OF FAIR INFORMATION PRACTICES FOR
HEALTH INFORMATION, TO AMEND SECTION 552A OF TITLE 5,
UNITED STATES CODE, AND FOR OTHER PURPOSES
APRIL 20, MAY 4 AND 5, 1994
Printed for the use of the Committee on Government Operations

raE FAIR HEALTH INFORMATION PRACTICES ACT
OF 1994
HEARINGS
BEFORE THE
INFORMATION, JUSTICE, TRANSPORTATION,
AND AGRICULTURE SUBCOMMITTEE
OF THE
COMMITTEE ON
GOVERNMENT OPERATIONS
HOUSE OF REPRESENTATIVES
ONE HUNDRED THIRD CONGRESS
SECOND SESSION
ON
H.R. 4077
TO ESTABLISH A CODE OF FAIR ESIFORMATION PRACTICES FOR
HEALTH INFORMATION, TO AMEND SECTION 552A OF TITLE 5,
UNITED STATES CODE, AND FOR OTHER PURPOSES
APRIL 20, MAY 4 AND 5, 1994
Printed for the use of the Committee on Government Operations
U.S. GOVERNMENT PRINTING OFFICE
84-^41 CC WASHINGTON : 1994
ForsalebytheU.S.GovernmentPrintingOffice
SuperintendentofDocuments.CongressionalSalesOffice,Washington,DC 20402
ISBN 0-16-046281-9
COMMITTEE ON GOVERNME^^^ OPERATIONS
JOHN CONYERS, Jr. Michigan, Chairman
,
CARDISS COLLINS, Illinois WILLIAM F. CLINGER, JR., Pennsylvania
HENRY A. WAXMAN, California AL McCANDLESS, California
MIKE SYNAR, Oklahoma J. DENNIS HASTERT, Illinois
STEPHEN L. NEAL, North Carolina JON L. KYL, Arizona
TOM LANTOS, California CHRISTOPHER SHAYS, Connecticut
MAJOR R. OWENS, New York STEVEN SCHIFF, New Mexico
EDOLPHUS TOWNS, New York CHRISTOPHER COX, California
JOHN M. SPRATT, JR., South Carolina CRAIG THOMAS, Wyoming
GARY A. CONDIT, California ILEANA ROS-LEHTINEN, Florida
COLLIN C. PETERSON, Minnesota RONALD K. MACHTLEY, Rhode Island
KAREN L. THURMAN. Florida DICK ZIMMER, New Jersey
BOBBY L. RUSH, Illinois WILLIAM H. ZELIFF, Jr., New Hampshire
CAROLYN B. MALONEY, New York JOHN M. McHUGH, New York
THOMAS M. BARRETT, Wisconsin STEPHEN HORN, California
DONALD M. PAYNE, New Jersey DEBORAH PRYCE, Ohio
FLOYD H. FLAKE, New York JOHN L. MICA, Florida
JAMES A. HAYES, Louisiana
CRAIG A. WASHINGTON, Texas BERNARD SANDERS, Vermont
BARBARA-ROSE COLLINS, Michigan (Indeftendent)
CORRINE BROWN, Florida
MARJORIE MARGOLIES-MEZVINSKY,
Pennsylvania
LYNN C. WOOLSEY, California
GENE GREEN, Texas
BART STUPAK, Michigan
Julian Epstein, StaffDirector
Matthew R. Fletcher, Minority StaffDirector
Information, Justice, Transportation and Agriculture Subcommittee
GARY A. CONDIT, California, Chairman
MAJOR R. OWENS, New York CRAIG THOMAS, Wyoming
KAREN L. THURMAN, Florida ILEANA ROS-LEHTINEN, Florida
LYNN C. WOOLSEY, California STEPHEN HORN, California
BART STUPAK, Michigan
Ex Officio
JOHN CONYERS, JR., Michigan WILLIAM F. CLINGER, JR., Pennsylvania
Robert GellMAN, ChiefCounsel
AURORA Ogg, Clerk
Diane Major, Minority Professional Staff
(11)
CONTENTS
Page
Hearingheldon:
April 20, 1994 1
May4, 1994 175
May 5, 1994 399
TextofH.R. 4077 15
StatBeamkeenrt,oJf:ohn, seniorvice president, Equifax, Inc., Atlanta, GA 126
Barker, Richard, M.D., president, healthcare industries, IBM Corp., ac-
companied by Martin Sepulveda, M.D., director, occupational health
services 316
Berenson, Aimee R., legislative counsel, AIDSAction Council 410
Bolan, Robert S., chairman, Medic Alert Foundation International,
CA 348
Turlock,
Condit, Hon. Gary A., a Representative in Congress from the State of
California, and chairman. Information, Justice, Transportation, and
AgricultureSubcommittee: Opening statement 1
Entin, Fredric, senior vice president and general counsel, American Hos-
pitalAssociation 221
Frawley, Kathleen, director, Washington office, American Health Infor-
mationManagementAssociation 291
Gimpel, Joel E., associate general counsel. Blue Cross and Blue Shield
Association, Chicago, IL, representing the Workgroup on Electronic
Data Interchange • 250
Goldman, Janlori, director, privacy and technology project, American
Civil Liberties Union 448
Hunter, Nan D., deputy general counsel. Department of Health and
HumanServices 104
Jacobs, Susan L., staffattorney. Legal Action Center, NewYork, NY 426
Lewers, Donald, M.D., member, board of trustees, American Medical
Association 176
Sawyer, Hon. Thomas C, a Representative in Congress from the State
ofOhio 399
Schwartz, Paul, associate professor of law. University of Arkansas Law
School, Fayetteville, AR 358
Velazquez, Hon. Nydia, a Representative in Congress from the State
ofNewYork 95
Westin, Alan, professor of public law and government, Columbia Univer-
sity, New York, NY 152
Letters, statements, etc., submitted forthe recordby:
Baker,John, seniorvice president, Equifax, Inc., Atlanta, GA:
Booklet entitled "Consumer Information and Privacy, the Equifax
128
Perspective"
Prepared statement 139
Barker, Richard, M.D., president, healthcare industries, IBM Corp.: Pre-
pared statement 320
Berenson, Aimee R., legislative counsel, AIDS Action Council: F*repared
statement 413
Bolan, Robert S., chairman, Medic Alert Foundation International,
Turlock, CA: Prepared statement 351
Condit, Hon. Gary A., a Representative in Congress from the State of
California, and chairman. Information, Justice, Transportation, and
Agriculture Subcommittee: Opening statement 2
Conyers, Hon. John, Jr., a Representative in Congress from the State
oi Michigan: PreparedStatement 94
(III)
IV
— Page
Letters, statements, etc., submitted forthe recordby Continued
Entin, Fredric, senior vice president and general counsel, American Hos-
pitalAssociation: Preparedstatement 224
Frawley, Kathleen, director, Washington office, American Health Infor-
mation ManagementAssociation: Prepared statement 293
Gimpel, Joel E., associate general counsel, Blue Cross and Blue Shield
Association, Chicago, IL, representing the Workgroup on Electronic
Data Interchange: Prepared statement 254
Goldman, Janlon, director, privacy and technology project, American
Civil Liberties Union:
ViewsconcerningH.R. 4077 470
Prepared statement 451
Hunter, Nan D., deputy general counsel. Department of Health and
HumanServices: Prepared statement 109
Jacobs, Susan L., staft attorney, Legal Action Center, New York, NY:
Prepared statement 429
Lewers, Donald, M.D., member, board of trustees, American Medical
Association: Preparedstatement 178
Owens, Hon. Major R., a Representive in Congress from the State of
NewYork: Prepared statement 406
Sawyer, Hon. Thomas C, a Representative in Congress from the State
ofOhio: Prepared statement 402
Schwartz, Paul, associate professor of law. University of Arkansas Law
School, Fayetteville, AR: Prepared statement 362
Sepulveda, Martin, M.D., director, occupational health services, IBM
Corp.: Prepared statement 320
Thomas, Hon. Craig, a Representative in Congress from the State of
Wyoming: Prepared statement 405
Westin, Alan, professor of public law and government, Columbia Univer-
sity, NewYork, NY: Prepared statement 158
Woolsey, Hon. Lynn C, a Representative in Congress from the State
ofCalifornia: F*repared statement 103
APPENDIXES
—
Appendix 1. Response to subcommittee questions by Ms. Patti Goldman,
senior associate director, congressional and executive branch relations,
American Hospital Association 479
Appendix 2.^^tatements submitted forthe record 499
Appendix 3.—Health information privacy survey 1993. Conducted for Equifax
by Louis Harris andAssociates in association with Dr. Alan Westin, Colum-
biaUniversity 532
THE FAIR HEALTH INFORMATION PRACTICES
ACT OF
1994
WEDNESDAY, APRIL 20, 1994
House of Representatives,
Information, Justice, Transportation,
AND Agriculture Subcommittee
OF THE Committee on Government Operations,
Washington, DC.
The committee met, pursuant to notice, at 9:35 a.m., in room
2247, Rayburn House Office Building, Hon, Gary A. Condit (chair-
man ofthe subcommittee), presiding.
Present: Representatives Gary A. Condit, Lynn C. Woolsey, Craig
Thomas, Ileana Ros-Lehtinen and Stephen Horn.
Also present: Representative John Conyers, Jr.
Staff present: Robert Gellman, chief counsel; Aurora Ogg, clerk;
and Diane Major, minority professional staff, Committee on Grov-
ernment Operatons.
OPENING STATEMENT OF CHAIRMAN CONDIT
Mr. Condit. If I could have your attention, we'll begin the meet-
ing. Today we're holding the nrst in a series of hearings on H.R.
4077, The Health Information Practice Act of 1994.
The purpose of the legislation is to establish a uniform Federal
code of fair information practices for health data. The bill covers
individually identifiable health information that originated or is
used in the health treatment and payment process.
The need for Federal legislation was clearly established in a
hearing held by this subcommittee last November. The Office of
Technology Assessment reported that the present system of pro-
tecting health care information is based on a patchwork quilt of
laws. State laws vary significantly in scope and Federal laws are
applicable only to limited kinds ofinformation.
I have a lengthy statement that I would like to add that gives
an explanation of the bill and answers some questions that have
been asked about the bill, and I will include that in the record and
make that available to anyone who would like to review it.
[The opening statement of Mr. Condit and a copy ofthe bill H.R.
4077 follows:]
(1)
Opening Statement
CHAIRMAN GARY CONDIT
Subcommittee on Information,Justice,Transportation and Agriculture
FAIR HEALTH INFORMATION PRACTICES ACTOF 1994(H.R. 4077)
April20, 1994
Todayweholdthefirstin aseriesofhearingson H.R.4077, theFairHealth
InformationPracticesActof 1994. Thepurposeofthelegislationistoestablishauniform
federalcodeoffairinformationpracticesforhealthdata. Thebillcoversindividually
identifiablehealth information thatoriginatesorisused inthehealth treatmentandpayment
process.
Theneedforfederallegislation wasclearlyestablishedinahearingheldbythis
SubcommitteelastNovember. TheOfficeofTechnologyAssessmentreportedthatthe
presentsystemofprotectinghealthcareinformation isbasedonapatchworkquiltoflaws.
Statelawsvarysignificantly inscope,andfederal lawsareapplicableonlytolimitedkindsof
information. Overall, OTAfoundthatthepresentlegalschemedoesnotprovideconsistent,
comprehensiveprotectionforprivacyin healthcareinformation. Similarconclusionswere
reachedbyotherwitnessesandinotherstudies.
The needforlegislationisevenstrongernowbecauseoftheprospectofhealthreform.
Increasedtransferanduseofhealth information willbekeyelementsinanyhealthreform
plan. Establishingrulesthatdefinetheproperusesofidentifiablehealth informationisa
necessaryfeatureofhealthreformlegislation. H.R. 4077willprovideacomprehensive,
uniform,andreasonablesetofguidelinesthatwillbecompatiblewith anyhealthbillthat
passestheCongress.
Anyonewhohaseverlookedatanyhealthcarelegislationknowsthatitcanbe
complex. H.R. 4077isnoexception. Thehealthcaresystem islargeandcomplicated,
involvingmanydifferentinstitutions,organizations, andgovernmentagencies. Balancingthe
confidentialityinterestsofpatientswith theinformationneedsofthehealthcaresystemis not
asimpletask.
IbelievethatmostAmericans wouldbesurprised -- and notespeciallypleased--
abouttheextensiveuseofhealth informationfornon-treatmentpurposesboth insideand
outside thehealthcaresystem. As apracticalmatter,however, itisnotbepossibleto
promisepatientsabsoluteprivacy. Butwhereuseofhealthrecordsmustbetolerated,wecan
askthatusersacceptagreaterresponsibilityasaconditionofaccess. Acodeoffair
informationpractices meansthattherewillbesomechangesinthehandlingofpatientdata.
Userswillbeaccountableforthewaysin which they useanddisclosedata.
I will nottakethetime nowtodescribe H.R.4077. Attachedtomyopeningsutcment
isasetofquestionsand answerswith more informationaboutthebill. Wewillcertainly
coversomeofthespecificsatthesehearings.
TheSubcommitteehas scheduledtwoadditional hearingsnextweek, onWednesday
andThursday. Thewitnesseswillincluderepresentativesofsomeofthemajorhealthcare
organizationsandadvocacygroups. Thosewhocannotbeaccommodatedatthehearingsmay
submitwrittencommentsortestimony.
Today,wewillhearfromRep. NydiaVelizquez,RepresentativefromtheTwelfth
DistrictofNewYork,andacosponsorofthebill. Shewillsharewith usherown story
abouttheimproperdisclosureofsensitivehealth information. Wewillalsoreceivetestimony
fromtheQinton Administration,representedbyNan Hunter,DeputyGeneralCounselatthe
DepartmentofHealthandHumanServices.
Finally,we willheartheresultsofarecentpublicopinionpollonhealthprivacy
issues. Equifaxhasperformedan importantpublicserviceby sponsoringthisverytimely
survey. Equifax isrepresentedtodaybyJohnBaker,SeniorVicePresident Theanalysiswill
beprovidedbyProfessorAlanWestinofColumbiaUniversity. ProfessorWestin isoneof
theleadingprivacyscholars,andheconductedthefirststudyoncomputersandhealthrecords
in 1976.
Fair Hcallh Information Practices Actof 1994 (H.R. 4077)
Executive Summary
The Fair Health Infomiation Practices Actof 1994 (H.R. 4077) was introduced
on March 17, 1994, by Rep. Gary Condit, Chairman ofthe Subcommitteeon
Information,Justice, Transportation, and Agriculture. The bill is intended to be
considered as partofthe Health Security Act(H.R. 3600). SubtitleB ofTitleV ofthe
Health Security Act has beenreferred to the Subcommittee.
Tliepurpose ofthe Act is toestablish acode offairinformation practicesfor
the use anddisclosure ofhealth information thatoriginates in orbecomes apartofthe
health treatment orpayment system. The Actestablishes uniform federal rules that
will apply tocovered health information in all states.
Thereare two new basic concepts in the Act. First, identifiable health
information relating to theprovision oforpaymentforhealth care that iscreated or
used during the medical treatnientorpaymentprocess becomesprotectedhealth
infomiation. In general,protected health information remains subject to statutory
restriction no matterhow itis used ordisclosed.
The second basicconcept is thatofahealth information trustee. Almostanyone
who has access to protected health information becomes a health information trustee
underthe bill. There arethreedifferenttypes oftrustees. Thosedirectlyinvolved in
providing treatment and inpaying fortreatment arehealth use trustees. Thosewho
use identifiable information forpublic healthorhealthresearch purposes arepublic
health trustees. Finally, otherswho havean occasional need forhealth information to
accomplish aspecific purposeauthorizedbylaw arespecialpurpose trustees.
Each class oftrusteehas a setofresponsibilitiesand authorities thathavebeen
carefully defined to balancelegitimate societal needs fordata againsteachpatient's
right to privacy and the need forconfidentiality in the health treatmentprocess.
Trustees arerequired to --
• maintain appropriate administrative, technical, and physical safeguards
toprotect integrityandprivacy ofhealth information;
• maintain an accountingofthedate, nature, and purposeofany
disclosure ofprotected health information;