Personal Health Information Management and the Design of Consumer Health Information ...

131 Pages·2009·1.1 MB·English

Personal Health Information Management and
the Design of Consumer Health Information
Technology
Background Report
Prepared for:
AgencyforHealthcareResearchandQuality
U.S.Department ofHealthandHumanServices
540GaitherRoad
Rockville,MD20850
www.ahrq.gov
Prepared by:
Insight PolicyResearch, Inc.
1901NorthMooreStreet
Suite601
Arlington,VA22209
AHRQ Publication No.09-0075-EF
June2009
PHIMBackgroundReport
Personal Health Information Management and the
Design of Consumer Health Information Technology
Background Report
Prepared for:
AgencyforHealthcareResearchandQuality
U.S.Department ofHealthandHumanServices
540GaitherRoad
Rockville,MD20850
www.ahrq.gov
ContractNo.HHSA290200710072T
Prepared by:
Insight PolicyResearch, Inc.
1901NorthMooreStreet
Suite601
Arlington,VA22209
Supported by:
CenterforHealth InformationandDecisionSystems
Robert H.SmithSchoolofBusiness,UniversityofMaryland
VanMunchingHall
CollegePark,MD20742
Authors:
RituAgarwal,Professor andDirector,Centerfor Health Informationand DecisionSystems
(CHIDS)
JibanKhuntia,CenterforHealth Informationand DecisionSystems (CHIDS)
Project Officer:
Teresa Zayas-Caban,AHRQ
AHRQ Publication No.09-0075-EF
June2009
PHIMBackgroundReport
This document is inthepublicdomainandmaybe usedandreprintedwithout permissionexcept
thosecopyrightedmaterials that are clearlynoted inthedocument.Further reproductionofthose
copyrightedmaterials is prohibitedwithout thespecificpermissionofcopyright holders.
Suggested Citation:
Agarwal R,KhuntiaJ. Personal Health InformationandtheDesignofConsumerHealth
InformationTechnology: BackgroundReport. (PreparedbyInsight PolicyResearchunder
Contract No.HHSA290200710072T). AHRQPublicationNo.09-0075-EF. Rockville,MD:
AgencyforHealthcareResearchandQuality.June2009.
Noneof theinvestigators has anyaffiliations orfinancial involvementthatconflicts
with thematerial presented in this report.
Thefindings andconclusions inthis document arethoseoftheauthors who areresponsible
forits contents; thefindings andtheconclusions donot necessarilyrepresent theviews of
AHRQ. Nostatement in this articleshouldbeconstruedas anofficial positionofthe
AgencyforHealthcareResearchandQualityorof theU.S.Department of Healthand
HumanServices.
PHIMBackgroundReport
Acknowledgments
This report was prepared byInsight PolicyResearch, Inc.undercontract no.
HHSA290200710072Tfrom theAgencyforHealthcareResearchandQuality. This report
represents ateam effort inwhichmanyindividuals madekeycontributions inadditiontothe
authors. Wegratefullyacknowledgetheir assistance. Wewouldliketorecognizethesustained
helpofTeresa Zayas-Caban,theAHRQProject Officer. The authors wouldalso liketothank
thenumerous individuals from Insight PolicyResearch, Inc.whohelpedwiththis report,
particularlyAnnePeterson,ExecutiveProject Director,ClaireWilson andEmilyO.Smith,who
helpedwithwritingandediting. Wewouldalso liketothankSidSchneider,SeniorStudy
DirectorofWestat,who providedexpert advice andreview.
PHIMBackgroundReport
CONTENTS
ExecutiveSummary.........................................................................................................................i
Chapter1: TheDomainofPersonal Health InformationManagement and
ConsumerHealth InformationTechnology..................................................................................1
1.1 Backgroundand Introduction..................................................................................1
1.2 Goal oftheReport....................................................................................................5
1.3 Personal Health InformationManagement as aSpecial CaseofPersonal
InformationManagement.........................................................................................5
1.4 OrganizationoftheReport.......................................................................................6
Chapter2: AConceptual Mapofthe Literature..............................................................................9
2.1 The“Informational” FoundationofPersonal Information
Management andPersonal Health InformationManagement.................................9
2.2 Essential Personal InformationManagement Activities........................................11
2.3 ThePersonal InformationManagement “System” ...............................................12
2.4 Summary................................................................................................................14
Chapter3: Sources andTypes ofPersonal Health Information.....................................................15
3.1 Types ofPersonal Health Information...................................................................16
3.2 AnAlternateClassificationBasedonChronology................................................20
3.3 Sources ofPersonal Health Information................................................................25
3.4 Summary................................................................................................................31
Chapter4: Users ofPersonal Health Information..........................................................................32
4.1 Who Is theUserinPersonal Health Information
Management? ExtendingtheConcept ofUser......................................................32
4.2 DiversityinUserGoals andAttributes..................................................................35
4.3 Tensions CausedbyUser Diversity.......................................................................37
4.4 Summary................................................................................................................38
Chapter5: Strategies for ManagingandOrganizingPersonal Healthand
OtherPersonal Information.........................................................................................................39
5.1 OverviewofManagingandOrganizingPersonal Information..............................40
5.2 Strategies forManagingandOrganizingPersonal Information............................42
5.3 The InterplaybetweenPersonal InformationManagement Strategy
andtheDesignofTools.........................................................................................51
5.4 Summary................................................................................................................52
PHIMBackgroundReport
Chapter6: Tools andArtifacts forPersonal InformationManagement........................................53
6.1 PaperandDigital Forms ofArtifacts forPersonal Information
Management andPersonal Health InformationManagement...............................54
6.2 CategorizationofTools andArtifacts forPersonal Information
Management andPersonal Health InformationManagement...............................55
6.3 Summary................................................................................................................62
Chapter7: DesignConsiderations andPrinciples forConsumerHealth Information
Technology…….........................................................................................................................66
7.1 TheDesignProcess................................................................................................68
7.2 General DesignConsiderations andPrinciples for Personal Information
Management andPersonal Health InformationManagement Tools.....................69
7.3. DesignConsiderations andPrinciples forSpecific Personal Information
Management andPersonal Health InformationManagement Tools.....................75
7.4. Discussion..............................................................................................................79
7.5 Summary................................................................................................................80
Chapter8: Barriers toEffectivePersonal Health InformationManagement.................................81
8.1 Barriers toEffectivePersonal InformationManagement andPersonal
Health InformationManagement...........................................................................82
8.2 Barriers totheUseofTools forPersonal Health InformationManagement.........85
8.3 Summary................................................................................................................88
Chapter9: ResearchMethods UsedtoStudyPersonal InformationManagement
andPersonal Health InformationManagement..........................................................................89
9.1 NaturalisticApproaches.........................................................................................91
9.2 LaboratoryApproaches..........................................................................................94
9.3 Summary................................................................................................................96
Chapter10: Critical Assessment ofGaps inKnowledgeandUnderstanding ..............................98
10.1 Gaps inKnowledge and Understanding................................................................98
10.2 Recommendations for FutureWork.......................................................................99
10.3 Summary..............................................................................................................103
Chapter11: Conclusion................................................................................................................104
References....................................................................................................................................106
PHIMBackgroundReport
Figures
Figure1.Thedomainof Personal InformationManagement........................................................10
Figure2.Thebalancemodel ofaworksystem ............................................................................13
Figure3.Classificationschemaofinformationfor Personal Health InformationManagement...15
Figure4.Extendingthe concept ofuser........................................................................................33
Figure5.User goals and attributes relevant forPersonal Health InformationManagement ........36
Figure6.Personal informationmanagement strategies.................................................................39
Figure7.Tools and artifacts forsupportingPersonal InformationManagement..........................53
Figure8.Design considerations forconsumerhealth IT...............................................................67
Figure9. Barriers toeffectivePersonal Health InformationManagement....................................81
Figure10.Researchapproaches usedinPersonal InformationManagement
andPersonal Health InformationManagement studies..............................................................89
Tables
Table3.1.Classification ofPersonal Health Informationandrelated
sources—illustrations from literature.........................................................................................21
Table3.2.Categorizationofthesources ofPersonal Health Information
andrelatedtypes—illustrations from literature..........................................................................28
Table6.1.Tools andartifacts forPersonal Health Information: Categorization
andillustrations...........................................................................................................................63
Appendix
LiteratureReviewMethodology..................................................................................................113
Table1: SearchThemes, KeyWords, Phrases and Concepts...................................................114
Table2: Databases used forsearchprocess..............................................................................115
Table3: Inclusionandexclusioncriteriaduringthereviewprocess........................................116
PHIMBackgroundReport
Executive Summary
Objectives of the Report
Healthinformationtechnology(health IT)has beenidentifiedas acrucial component of
addressingpersistent deficiencies intheUnitedStates healthcaresystem,includingpatient
safety,qualityofcare, andhighcosts. Aseries of influential reports publishedbythe Institute
ofMedicineincludingCrossingtheQualityChasm(2001),ExploringInnovationandQuality
andImprovement (2001), andToErr is Human:BuildingaSafer HealthSystem(2000)have
underscoredtheimportanceofdeliveringpatient-centered careandusinghealth ITin care
delivery,acceleratingadvances inconsumerhealth IT andprovidedtheimpetus foranationwide
focus onpatient empowerment through consumer health IT.
Consumerhealth ITis thecollectionoftools, technologies, and artifacts that consumers canuse
tosupport theirhealthcaremanagement tasks.“Patient empowerment”wheretheindividual
healthcareconsumeris conceptualizedas afocal playerintheflowofhealthinformation,and
whereinformationtechnologyis viewed as akeyenablerofthis empowerment is animportant
andrecurrent themeinthenational discourseonhealth. Suchempowerment inhealthcareis
criticallydependent onconsumers’abilitytocapture,store,and managetheir“personal health
information” (PHI). PHIincludes awiderangeof informationrelevant to theindividual’s
health,suchas body-mass data,healthstatus, existingailments, symptoms, diseasespecificvital
information,physiological details, medicationlists andschedules fortakingmedication.
Personal healthinformationmanagement (PHIM) has beendefinedas the activityinvolvingthe
integrationofpersonal,professional,andhealth-relatedinformation,which helps peoplemanage
theirlives andactivelyparticipateintheirownhealth care.
Evidencesuggests that thevaluepotential of consumerhealth IT andPHIM is compelling: the
management ofinformationrelatedtohealthhas beenshowntohaveadirect bearingonthe
healthandwelfareofindividuals. Inordertodesignappropriate consumer health ITapplications
that will enablepatients to managetheirownhealthandhealthcare,it is imperativeto
understandwhat consumerneeds andpractices arewithrespect toPHIand PHIM, so that
i
PHIMBackgroundReport
solutions that arebest suitedtosupport,extendoroptimizethosemanagement practices canbe
developed. Tothis end,inJuly2008,theAgencyforHealthcareResearch andQuality(AHRQ)
awarded Insight PolicyResearchofArlington,Virginiaa contract titled“Personal Health
InformationManagement andtheDesignofConsumerHealth Information Technology(IT).”
Oneofthetasks inthat contract is todevelopabackgroundreport basedon anextensive
literaturereviewandsynthesis ofexistingresearch onPHIM and consumer health IT. The report
is motivatedbya growingemphasis onaconsumer-centrichealthcaresystem andthedesireto
enableconsumers tobecomemoreempoweredin themanagement oftheir health. The goals of
thereport areto: (1)definethedomainofpersonal healthinformationmanagement,(2)
summarizeextant researchonthis topic,and(3)offerrecommendations that canenablebetter
designofPHIM tools that createvalueforusers.
Research relevant toPHIM andthedesignofconsumerhealth IT canbe foundinmultiple
disciplines includinghealthinformatics, humanfactors, human-computerinteraction,
informationsciences, andinformationsystems. As such,literature from eachofthesedisciplines
was reviewedforthis report. Articles wereinitiallyscreenedfor relevance tothegoals ofthe
report. Thoseselected forfurther review wereexaminedindetail andclassifiedintotopicareas
basedontheircontent andthespecific aspect ofPHIM practices andtools theyaddressed. The
report synthesizes andsummarizes theexistingliteratureacross thefollowingtopicareas:
 Existingevidenceonconsumers’personal informationmanagement (PIM) andpersonal
healthinformationmanagement needs and goals.
 Practices used forPHIM andPIM.
 Tools andtechnologies availabletodate,eithercommerciallyorinprototypeform.
 Gaps intheliterature regardingtheunderstandingofPHIM.
Additionally,thereport identifies areas inwhichfutureresearchis necessaryinordertodrivethe
designof effective consumerhealth IT.
ii
PHIMBackgroundReport
Key Themes in the Literature
Belowaresomeofthekeythemes identifiedfrom theliteraturereview across all disciplines.
PHIM as aspecial case oftheactivityofpersonal informationmanagement (PIM). PIM refers
tothecollectionoftasks that peopleperform inordertoacquire,organize, maintain,retrieve and
useinformationitems suchas forms anddocuments (that mayexist inpaper-basedordigital)
format),web pages, and email messages tocompletetasks (professional or personal)and fulfill
their various roles (as parent,employee, friend,or memberofa community). Coretasks ofPIM
includethesearch,retrieval,andrefindingofpreviouslyencounteredinformationfrom both
personal andsharedspace. Personal information management occurs ina complex milieuor
“system”that includes theinteractions between characteristics ofusers, information,andneeds.
PHIM canthereforebe consideredaspecial case ofpersonal informationmanagement because
PIM andPHIM overlapintheiroverarchinggoals, except that thelatterrelates specificallytothe
management ofhealthinformation. Thus, theindividual’s PIM practices andthetools that used
tosupport thePIM activities will doubtless influencePHIM practices.
Thereareavarietyofdifferent types ofinformation that constitutetheset ofpersonal health
informationthat aconsumermayneed to collect, organize,store,andretrievewhileengagingin
PHIM activities. This information comes from amultiplicityofinformation sources with
whichtheindividual interacts withvaryingfrequencyandintensity. Based ontheliterature
review,twoclassificationschemes weredeveloped: onefortypes ofpersonal healthinformation
(withsevencategories), andanotherfor sources of personal healthinformation(withfive
categories). PHIcanbe classifiedintosevencategories basedonthevalue derivedfrom the
content oftheinformationbeyondits specificpurposeorprimaryvalue; andforpurposes other
thanwhat it was originallycreatedfor (i.e.,informational value): (1)personal identifiers, (2)
personal demographics, (3)emergencymedical andcritical information,(4) biomedical,clinical
andgeneticpersonal healthinformation,(5)mental orpsychological personal healthinformation,
(6)physical activity,body-mass information,exerciseregime,nutritionand energylevels, and
(7)informationdealingwithinsuranceor financial matters relevant tohealthmanagement. The
iii