Improving Consumer Health Literacy with Informatio

EncyclopaediaofHealthcareInformationSystems,N.Wickramasinghe(Ed),IdeaGroup,Inc,Forthcoming2007.ImprovingConsumerHealthLiteracywithInformationTechnologyGondyLeroy,PhDSchoolofInformationSystemsandTechnologyClaremontGraduateUniversityIntroductionBeforetheInternetbecamepopularasadevicefordistributingandsharinginformation,peopleturnedtofriends,booksandtheirdoctorwhentheyhadamedicalquestion.Today,manymoreoptionsexist(Figure1).Hundredsofwebsitesprovidehealthinformationandopportunitiesforinteractionbetweenpatients,doctorsandcaregivers.Estimatesdiffer,butallsurveysshowthatmillionsofpeoplesearchonlineforhealthinformation.APewsurveyestimatesthat80%ofadultInternetusers,about93millionAmericans,searchedonlineforatleastoneof16majorhealthtopics(Fox&Fallows,2003).Baker,Wagner,SignerandBundorf(2003)estimatethat20%oftheUSpopulationusestheInternettofindhealthinformation.Alargerproportion(71%)ofolderpeople(50to64yearsold),comparedto53%ofyoungerpeople(18to29yearsold),turntotheInternetforhealthinformation(Fox&Rainie,2002).Althoughthereisadigitaldivide,useofinformationtechnologyisnotsimplydecidedbyraceorsocialclass.Safran(2003)foundthatMedicaidfamilies,whoarebelievednottousethesenewtechnologies,accessedtheironlineBabyCareLinkfromthehospital,work,libraryorotherpublicaccesspoints.Gustafsonetal.(2002)pointoutthatpovertyistheprimeindicatorforlackoftechnologyuse.EncyclopaediaofHealthcareInformationSystems,N.Wickramasinghe(Ed),IdeaGroup,Inc,Forthcoming2007.Figure1:InformationSourcesforConsumersTheproblemweaddressinthischapteristheconsumers’lackofunderstandingoftheavailableinformation.Thisisextremelyimportant,sinceforatleastathirdoftheseconsumerstheinformationaffectsdecisionsabouttheirhealth,healthcareandvisitstoahealthcareprovider(Bakeretal.,2003).WarnerandProcaccino(2004)foundamuchhigherpercentageinhisinterviewswithwomen:morethan80%respondedthattheinformationtheyfoundonlineaffectedtheirdecisionsabouttreatments.BackgroundThousandsofwebsitesprovideinformationandadditionalopportunitiestoshareinformationinaninteractiveformat.Theinformationcanbetargetedatthegeneralpublicoraspecificsubgroupandthereareseveraladvantagestothistrend.Foremost,consumerswillbemoreinformed.Thisisabenefitbecauseitempowersthemtoaskmoreinformedquestionswhenseeingtheircaregiveranditlessenstheirfearoftheunknown(Fox&Fallows,2003).Often,physicianswanttorefertheirpatientstowebsitesandprintedpatienteducationalmaterialforadditionalinformation(Brawn,2005).TheonlineinformationisespeciallybeneficialforconsumerswhoneedmoreEncyclopaediaofHealthcareInformationSystems,N.Wickramasinghe(Ed),IdeaGroup,Inc,Forthcoming2007.detailedinformationthantheirhealthcareprovidercangiveinalimitedamountoftime.Forexample,RosmovitsandZiebland(2004)conductedin-depthinterviewswithcancerpatientsandfoundthattheyhavecomplexinformationneedsthatwerenotmetbytheirhealthcareproviders.Theyfelttheyreceivedincompleteandsometimescontradictoryinformationfromtheircaregivers.Consumersalsointeractwitheachotheronlinetoprovideinformationandsupport.Therearemanysupportgroupswheremembersshareadviceorprovidesupportindifficulttimes,e.g.multiplesclerosispatientssupportingeachotherduringpainfulself-injections(Johnson&Ambrose,2006).Unfortunately,therearealsodisadvantagesassociatedwiththehealthinformationasitiscurrentlyprovidedonline.Thedisadvantagescanbeclassifiedintotwogroupsrelatedtoincorrectinformationandincorrectunderstandingofinformation.SincetheInternetisnotregulated,thereisnoguaranteethattheinformationprovidediscorrectandtrustworthy.Thegeneralpublicshouldbeeducatedintheusageofthisinformation.Murrayetal.(2003)questionedphysiciansandfoundthat75%oftherespondentsfeltthathealthinformationontheInternetwasagoodthing.However,thequalityoftheonlineinformationaffectedthehealthcareoutcomeandthepatient-physicianrelationship.Accurateandrelevantinformationhadabeneficialeffectonboth.Inaddition,theoutcomeandrelationshipwerealsoinfluencedbythephysician’sperceivedthreattohisorherauthority,especiallywhenthepatientwantedsomethinginappropriate.Thesecondgroupofproblemscentersonthehealthconsumers’lackofunderstandingofthisinformation(Berlandetal.,2001;D'Alessandro,Kingsley,&Johnson-West,2001;Root&Stableford,1999)andhasconsequencesforhealthcareatlarge.TheCommitteeonHealthLiteracyfortheCouncilonScientificAffairs(1999)foundthatmisunderstandingsinhealthinformationincreasetheriskofmakingunwisehealthdecisionsleadingtopoorerhealthandhigherhealthcarecosts.Forexample,GarbersandChiasson(2004)showedthatLatinaswithlowhealthliteracyweresignificantlylesslikelytohavepreventivecervicalcancerscreening.Kalichmanetal.(2000)foundthatHIV/AIDSpatientswithlowliteracylevelsweremorelikelyto(incorrectly!)believethatanti-viraldrugswouldhelppreventtransmittingHIVduringunprotectedsex.Figure2showshowtechnologycanhelpimproveunderstandingofhealthinformation.CurrentresearchisstillintheearlystagesandhasnotadvancedmuchbeyondmeasuringreadinglevelsanddescribingtheseinnumerousstudiesofconsentEncyclopaediaofHealthcareInformationSystems,N.Wickramasinghe(Ed),IdeaGroup,Inc,Forthcoming200