Annotated Bibliography TABLE OF CONTENTS

Access to PHRs .................................................. Page 2 Improving diabetes management with electronic health records and patients’ health records.

Attitudes-Consumer ......................................... Page 20 User-centered research on breast cancer patient needs and preferences of an Internet-based clinical trial matching system.

Barriers.............................................................. Page 51 Implementing an Interoperable Personal Health Record in Pediatrics: Lessons Learned at an Academic Children’s Hospital.

Benefits ............................................................. Page 71 A review of the personal health records in selected countries and Iran.

Best Practices................................................. Page 107 Health information management and perceptions of the quality of care for children with tracheotomy: A qualitative study.

Costs................................................................ Page 122 Dozens of companies are trying to leverage social networking and other software tools to accelerate trials and reduce their cost.

Definitions and Functions ............................. Page 132 Brief editorial about the importance of a PHR. Identifies that for information to be shared effectively, all providers must have a standardized, network-accessible health record, and encourage patients to use integrated PHRs

Engaging Consumers .................................... Page 171 Implementing an interoperable personal health record in pediatrics: Lessons learned at an academic children’s hospital.

Exchange/Interoperability.............................. Page 203 Implementing an interoperable personal health record in pediatrics: Lessons learned at an academic children’s hospital.

Features........................................................... Page 214 A review of the personal health records in selected countries and Iran.

Financial and Political Drivers ...................... Page 236 A synthesis of the literature to define the domain of personal health information management (PHIM), summarize research on the topic, and make recommendations for better design of PHIM tools that provide value for users.

Health Literacy................................................ Page 243 This 2007 report is the fifth National Healthcare Disparities Report (NHDR). The NHDR provides a comprehensive national overview of disparities in health care among racial, ethnic, and socioeconomic groups in the general U.S. population and within specific priority populations, and it tracks the progress of activities to reduce disparities.

Measures ......................................................... Page 296 Usage patterns of a personal health record by elderly and disabled users.

Privacy and Security ...................................... Page 301 Patients’ empowerment of their personal health record requires strong traceability to guarantee patients health care security.

Provider Attitudes .......................................... Page 315 Health information management and perceptions of the quality of care for children with tracheotomy: A qualitative study.

Variation by Population ................................. Page 334 Personal health records: A scoping review.

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Annotated Bibliography

Consumer Engagement in use of a Personal Health Record or e‐Portal

These materials may be distributed to others without charge but should include the following credit:

This material was developed for the MN Community Measurement through the Robert Wood Johnson Foundation’s Aligning Forces for Quality initiative

Authors:

BonnieL. Westra, PhD,RN,FAAN,FACMI,Associate Professor,UniversityofMinnesota,SchoolofNursing&Institute for HealthInformatics,Co‐DirectorCenterforNursingInformatics LynnChoromanski,PhD,RN‐BC,NursingInformaticsSpecialist,GilletteChildren’s SpecialtyHealthcare, St.Paul,Minnesota JacquelynW.Cook,MN,RN,UniversityofMinnesota,SchoolofNursing DianeM.Davies,M.D.M.S.,DaviesandAssociates,LLC ElizabethFine,MLIS,AssociateLibrarian,Liaison,Education& Interdisciplinary Services, Bio‐MedicalLibrary,Universityof Minnesota Tari Rajchel,DNPStudent,RN,NursingInformatician–NorthMemorialHospital

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Access to PHRs: Annotated Bibliography

Benhamou,P.Y.(2011).Improving diabetesmanagement withelectronichealth records andpatients'healthrecords. Diabetes & Metabolism, 37(Suppl4),S53‐6. doi:10.1016/S1262‐3636(11)70966‐1 Thelackof patientengagement andclinicalinertiabothcontributetosuboptimal diabetescare.However,bothobstaclesare amenableto informatics‐andInternet‐basedinterventions. Theuseofelectronicmedicalrecords (EMRs)isnowestablished asbeingusefulforimprovingdiabetescare.Intelligentrecordsthatintegrate computerizeddecision‐supportsystemsare nowabletorecommend careprotocols tailored torisklevels. Web‐basedpersonalhealthrecord (PHR) systems,sharedwith healthcare providers,couldalso provideaddedvaluebypromoting self‐management ofthebehavioursrelatedtodiabetes.TheseWeb‐basedprogrammesincludepatients' accesstoEMRs,uploadingofglucosemonitoring results, aglucosediary,securee‐mail withproviders,manual orautomatedfeedbackonbloodglucosereadingsandother riskfactors, aneducationalwebsite,andanonlinediary forenteringpersonal information onexercise,diet and medication. TheintegrationofWeb‐basedpatients' systemsintotheEMRusedbyphysiciansis thenext frontier.In addition,theinput from"smartphones"thatareable toprovidereal‐timesupporttopatientscould contributetothereorganization ofdiabetescare.Convincingdataon HbA(1c) improvementswithsuchsystemsareavailable for type2 diabetes,butarestill equivocalfortype1diabetes.Obstaclesincludepatients'compliancewiththe

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technology,their ergonomicdesign andtheneedtoreimburseprovidersfor their care. Designingappropriate electronictoolsandtailoringthem totheconditions inFrance meritsour attention.

Bourgeois,F.C.,Mandl,K.D.,Shaw,D.,Flemming,D.,&Nigrin,D.J.(2009).Mychildren's: integration ofapersonallycontrolledhealthrecordwitha tetheredpatientportal fora pediatricandadolescentpopulation. AMIA Annual Symposium Proceedings, 2009, 65‐69. Personallycontrolledhealthrecords(PCHRs)andpatientportalsareincreasingly beingofferedbyhealthcareinstitutions,employers,insurance companies and commercialentitiesto allowpatientsaccess to theirhealthinformation.Both applications offeruniqueservices toprovide patientswithtoolstomanagetheir health.WhilePCHRsallowusers ubiquitous,portable,patientcontrolledaccesstotheir healthinformation,traditionalpatientportals provideprovider‐tethered applications allowingpatientsaccess,butnotcontrolof,certainhealthcareinformation, aswellas communicationandadministrative functions, suchassecuremessaging,appointment managementandprescription refillrequests,facilitating care ataspecifichealthcare facility.We describeourapproach forthedesign,contentcreation,policydevelopment, andimplementation of MyChildren's,auniqueweb‐basedapplication leveraging the advantages ofbothaprovider‐tetheredpatient portaland aPCHRto allowpatients andtheirguardians accesstothe functionalityandconvenience ofa traditionalpatient portal,aswellastheportabilityandflexibilityofaPCHR.

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Britto,M.T., &Wimberg,J.(2009).Pediatricpersonalhealth records:current trendsand keychallenges. Pediatrics, 123 Suppl 2,S97‐9.doi:10.1542/peds.2008‐1755I Personalhealthrecordsmayenhancepediatriccareandoutcomes.Fewsystems have beendevelopedorcustomizedfor pediatrics, andevaluationsarescarce.Special considerationsinpediatrics includepediatriccontent suchas growthcharts,complex privacyand confidentialityconsiderations,and thechangingdevelopmentalneedsof childrenandadolescents.

Burke,R.P.,Rossi,A.F.,Wilner,B. R.,Hannan, R.L.,Zabinsky,J.A.,& White,J.A.(2010). Transformingpatientandfamily accesstomedicalinformation: Utilisationpatternsof apatient‐accessibleelectronichealthrecord. Cardiology in the Young, 20(5),477‐484. doi:10.1017/S1047951110000363 OBJECTIVE:Thepurposeofthisstudywastoevaluatetheutilisationof aweb‐based multimedia patient‐accessibleelectronichealthrecord,forpatientswithcongenital cardiacdisease.PATIENTSANDMETHODS:Thiswasaprospective analysisofpatients undergoing congenital cardiacsurgeryat asingleinstitutionfrom1September, 2006 to1February,2009.Aftermeetingswithhospitaladministration,physicians,nurses, andpatients,weconfiguredasubsetofthecardiacprogram'sweb‐basedclinical electronichealthrecord forpatientandfamilyaccess.TheElectronicHealthRecord continuouslymeasured frequency andtimeof logins,loginsduring andbetween hospitalisations,andpageviewsby type(imagingversustextualdata).RESULTS:Of thefirst270patientsoffered access tothesystem,252became users(93%adoption rate).Systemuptimewas99.9%, andnosecuritybreacheswere reported.Users accessedthesystemmoreoftenwhilethepatientswere inhospital(67%oftotal

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logins)thanafterdischarge(33% oftotallogins).Themaximum numberofloginsbya familywas 440,andtheminimumwas1.The average numberofloginsper familywas 25.Imaging datawere viewedsignificantlymorefrequently than textualdata(p 0.001).Atotalof12patientsdiedduringthestudyperiod and 11membersoftheir familiescontinuedto accesstheirElectronicHealthRecordsafterthe dateofdeath. CONCLUSIONS:Aweb‐basedPatient AccessibleElectronicHealthRecordwasdesigned forpatients withcongenitalcardiac disease.Theadoption rate washigh,and utilisationpatternssuggestthat the ElectronicHealthRecord couldbecomeauseful toolforhealthinformationexchange.

Chinn,M.D.,&Fairlie, R.W. (2004).Thedeterminantsofthe globaldigitaldivide: Across‐countryanalysisofcomputerand internetpenetration. Yale University Economic Growth Center Discussion Papers, (881)Retrievedfrom http://www.econ.yale.edu/growth_pdf/cdp881.pdf Toidentify thedeterminants of cross‐countrydisparitiesinpersonalcomputerand Internetpenetration, weexamineapanelof 161countriesover the 1999‐2001 period. Ourcandidatevariablesinclude economicvariables(incomeper capita,yearsof schooling,illiteracy,tradeopenness),demographicvariables(youthandaged dependency ratios,urbanization rate),infrastructureindicators (telephonedensity, electricityconsumption),telecommunicationspricingmeasures, andregulatory quality.Withtheexceptionof tradeopenness andthetelecompricingmeasures,these variablesenter in asstatisticallysignificantin mostspecificationsforcomputeruse.A similarpatternholdstrueforInternetuse, exceptthattelephonedensityandaged dependency matterless.Theglobaldigitaldivideismainly–butbynomeansentirely

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–accounted forbyincomedifferentials.Forcomputers,telephonedensity and regulatory qualityare ofsecond andthirdimportance,whileforthe Internet,this orderingis reversed. Theregion‐specific explanations forlargedisparities incomputer andInternetpenetrationaregenerallyverysimilar.Ourresultssuggestthatpublic investmentinhumancapital,telecommunicationsinfrastructure, andtheregulatory infrastructurecanmitigatethegap inPCand Internetuse.

Chung,J.,Berkowicz,D.A.,Ho,B.,Jernigan,M.,&Chueh,H. (2011).Creatingaplacefor caregiversinpersonal health:theiHealthSpacecopilotprogram anddiabetescare. Journal of Diabetes Science and Technology, 5(1),39‐46.Retrievedfrom http://www.ncbi.nlm.nih.gov.ezp2.lib.umn.edu/pmc/articles/PMC3045238/ BACKGROUND:AsAmerica'sbabyboomgeneration reachesretirement,thenumberof elders,and, inturn, the number oflayindividualswhosupport them,willcontinue to increase.Withtheimportantservicescaregiversprovide, itis criticalthatwerecognize andprovideassistance totheinformalcaregiverswhoplaythis importantroleinour society.Thenetworkofsupportprovisionedbyrelatives, partners,friends,and neighborssuggeststhatthedyadic,unidirectionalcaregiver‐care recipientrelationship assumedbycaregiver researchsofarandbyresourcesdeployed toassistcaregivers maybeinsufficienttoascertain andmeettheneedsof the care community.METHODS: Inthisarticle,wedescribetheextensionof a Web‐basedpersonalhealthrecord system,iHealthSpace,forexplicitly andopenly incorporatingcaregiversinto thecare community. RESULTS:Using thisportal,aset ofbusiness rules wasimplementedto supportthecreationofcustodialaccounts.Thesebusiness ruleswillbeusedtocreate modulesthatsupportdiabetescareinanadultpopulation.CONCLUSIONS:We

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successfully extended anexisting patientportaltoaccommodate thecreationof custodialaccounts.Wewillusethisportaltoassesstheimpactofcustodialaccessin thecareof olderpatientswithdiabetes.

Clarke,J.L., Meiris,D.C., & Nash,D.B.(2006).Electronic personalhealthrecordscomeof age. American Journal of Medical Quality, 21(3Suppl),5S‐15S. doi:10.1177/1062860606287642 TheauthorsprovidebackgroundinformationdistinguishingaPHR,fromEHR,and EMR.Theydescribeconsumerand provider issuesthatmayprevent usingaPHR. The authorsthengoontoproposingasolution‐LifeSensor,whichisaWeb‐basedPHRthat ishighlyprotected and secured viaencryption, distributeddatastorage,authorization, andauthentication.It ispatientcenteredand patientcontrolled,withutilityfor physicianstoencouragetheiracceptance.Onlythepatient has therighttogrant a clinicianaccesstohisorherPHR.

Collins,S.A.,Vawdrey, D.K.,Kukafka,R.,&Kuperman,G.J. (2011).Policiesforpatient accesstoclinicaldataviaPHRs: Currentstateandrecommendations. Journal of the American Medical Informatics Association, 18 Suppl 1(Suppl1),i2‐7. doi:10.1136/amiajnl‐2011‐000400 OBJECTIVE:Healthcaredeliveryorganizations areincreasinglyusingonlinepersonal healthrecords(PHRs)toprovide patientswithdirectaccessto theirclinical information; however, theremaybealackofconsistencyinthe data madeavailable. WeaimedtounderstandthegeneraluseandfunctionalityofPHRsandthe organizationalpolicies anddecision‐makingstructuresfor makingdataavailableto

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patients.MATERIALS ANDMETHODS:Across‐sectional surveywas administeredby telephonestructuredinterviewto 21organizations todetermine thetypesofdata madeavailabletopatientsthroughPHRsandthepresence ofexplicitgovernancefor PHRdatarelease.Organizations were identifiedbasedonareviewoftheliterature, PHRexperts,andsnowballsampling.Organizations that didnot providepatients with electronicaccesstotheirdataviaaPHRwere excluded.RESULTS:Interviewswere conductedwith17organizations foraresponserateof81%.Halfof theorganizations hadexplicit governancein theformofawrittenpolicythatoutlined thedata types madeavailabletopatients.Overall,88%oftheorganizationsusedacommittee structureforthedecision‐making processand includedseniormanagement and information services.Allorganizationssoughtinputfrom clinicians.DiscussionThere wasconsiderablevariabilityin the typesofclinicaldata and thetimeframefor releasing thesedatato patients.Variabilityindatareleasepoliciesmayhave implicationsforPHRuseandadoption.CONCLUSIONS:Futurepolicyactivities, suchas requirementspecificationforthelatterstages ofMeaningfulUse,shouldbeleveraged asanopportunitytoencouragestandardization offunctionality andbroaddeployment ofPHRs.

Copeland, W.,&Keckley,P.(2008). Deloitte 2008 Survey of Healthcare Consumers Executive Summary. RetrievedApril22,2011,from http://www.deloitte.com/assets/Dcom‐UnitedStates/Local%20Assets/Documents/us_chs_ConsumerSurveyExecutiveSummar y_200208.pdf

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http://www.deloitte.com/assets/Dcom

 

          

ThisresearchstudybytheDeloitte Center for HealthSolutions,partof DeloitteLLP, providesan important andtimely perspectiveonhealthcareconsumerism.It features acomprehensiveassessmentofconsumers’behaviors, attitudes and unmetneeds relatedtohealth,healthcareand healthinsurance.Italso pointsto sixdiscrete segments oftheoverall consumer market,providingaprofileof their key characteristicsanddifferences.

Curtis,J.,Cheng,S.,Rose,K.,&Tsai, O.(2011). Promoting adoption,usability,andresearch forpersonalhealthrecordsin Canada:The MyChart experience. Healthcare Management Forum 24(3),149‐154. Sunnybrook'sMyChartPersonalHealthRecord(PHR)representsa directextensionof thehospital'selectronichealth recordandaninnovativeform ofhealthcarerecordthat promisesto changethewaypatientsandprovidersaccess andmanagetheinformation requiredto participate intheir care.Earlyattemptsatthe developmentofPHR featureshaveevolvedintoasetof emergentbestpracticesthatshoulddirectly inform theongoing developmentoftheMyChartplatformandshouldbecomplemented witha researchagenda thatsupportsevidence‐basedanalysisanddesignconsiderations affectingclinicalefficacy,administrative efficiency,andvaluegenerationforallPHR stakeholders.

Do,N.V.,Barnhill,R.,Heermann‐Do,K.A.,Salzman,K.L.,& Gimbel,R.W.(2011).The militaryhealthsystem'spersonalhealthrecordpilotwithMicrosoft HealthVaultand GoogleHealth. Journal of the American Medical Informatics Association, 18(2),118‐124. doi:10.1136/jamia.2010.004671

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OBJECTIVE:Todesign, build,implement,and evaluateapersonal healthrecord(PHR), tetheredto theMilitary Health System,thatleveragesMicrosoft(R)HealthVaultand Google(R) Healthinfrastructurebasedonuserpreference.MATERIALSAND METHODS:Apilotprojectwasconductedin2008‐2009 atMadigan ArmyMedical Center in Tacoma,Washington.OurPHRwas architected toaflexibleplatformthat incorporatedstandards‐basedmodelsofContinuityofDocumentand Continuity of CareRecordtomapDepartmentof Defense‐sourcedhealthdata,viaasecureVeterans Administrationdatabroker,toMicrosoft(R)HealthVaultandGoogle(R)Healthbased onuserpreference. Theproject designandimplementationwere guidedbyprovider andpatient advisory panelswith formaluserevaluation.RESULTS:Thepilotproject included250 beneficiary users.Approximately73.2%of userswere < 65years ofage, and38.4% were female.Ofthe users,169(67.6%)selectedMicrosoft(R)HealthVault, and81(32.4%)selectedGoogle(R)HealthastheirPHRofpreference.Sample evaluation ofusersreflected100% (n=60)satisfiedwith convenience ofrecord access and91.7% (n=55)satisfiedwithoverallfunctionalityof PHR. DISCUSSION:Key lessonslearnedrelated todata‐transferdecisions(pushvspull),purposefuldelays in reportingsensitiveinformation,understandingandmappingPHR useandclinical workflow,anddecisionsoninformationpatientsmaychoosetosharewiththeir provider. CONCLUSION:Currently PHRsare beingviewedasempoweringtoolsfor patientactivation.Designand implementation issues(eg,technical,organizational, information security)aresubstantialandmustbethoughtfully approached.Adopting standardsintodesigncanenhance thenational goalofportabilityandinteroperability.

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Gamble,K.H.(2009).Isitregistering?Patient portals,part II. Healthcare Informatics, 26(5), 24,26,28. Retrieved from http://www.healthcare‐informatics.com/article/it‐registering‐patient‐portals‐part‐ii‐see‐financial‐department‐part‐i Whilethetrendhasbeenslowedbytheeconomy,portaladoption isgrowing. CIOsare deployingportalsthat enablepatientstoaccess labresults,requestor cancel appointmentsand get discharge information.Someportalsenable patientsto communicatedirectly withphysicians andviewtheirrecords.Whilesomeportals integratewithEMRs(includinglabandpharmacy),otherssiton top.Manypatients‐‐andCIOs‐‐stillhaveconcerns regardingprivacyandsecurity.Someexpertsbelieve portalswillintegrate furtherwithhospitalinformationsystemsinthefuture,andwill includefunctionslike e‐prescribing.

Grossman,J.M.,Zayas‐Caban, T.,&Kemper,N.(2009).Informationgap:Can healthinsurer personalhealthrecordsmeetpatients'andphysicians'needs? Health Affairs (Project Hope), 28(2),377‐389. doi:10.1377/hlthaff.28.2.377 Personalhealthrecords(PHRs),centralizedplacesforpeopletoelectronicallystore andorganize theirhealthinformation,canbenefitbothpatientsanddoctors.This qualitative studyofhealthinsurers'PHRsforenrollees revealspotentialbenefitsand challenges. Insurers'abilitytoputclaims‐baseddata into the PHRoffersanadvantage. However,consumersareconcerned aboutsharingpersonalhealth informationwith insurers and aboutInternetsecurity.Physiciansquestion (1)thevalidityofclaimsdata inmakingtreatmentdecisionsand(2)whetheraccessingthesePHRsisworththe disruptionstotheirworkflow.Thispaperofferspossiblesolutionsthatmayleadto morewidespreadadoptionof insurerPHRs.

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Haggstrom,D.A.,Saleem,J.J.,Russ,A.L.,Jones,J.,Russell,S.A.,&Chumbler,N.R.(2011). Lessonslearned fromusabilitytestingof theVA'spersonal healthrecord. Journal of the American Medical Informatics Association, 18(Suppl1),i13‐7.doi:10.1136/amiajnl‐2010‐000082 Inorder to create user‐centereddesigninformation toguidethedevelopmentof personalhealthrecords(PHRs),24patientsparticipated inusability assessmentsof VA'sMyHealtheVetprogram.Observationalvideosand efficiency measureswere collectedamongusersperforming fourPHRscenarios:registration andlog‐in, prescription refill,trackinghealth,andsearchingforhealth information.Twenty‐five percentof userssuccessfullycompletedregistration.Individualspreferred prescription numbersovernames, sometimes duetoprivacyconcerns.Onlyefficiency inprescriptionrefillswassignificantlybetterthan targetvalues.Users wantedto print their informationtosharewiththeirdoctors,andquestionedthe valueof MyHealtheVetsearchfunctionsoverexisting onlinehealthinformation.Insummary, PHRregistrationmust balancesimplicityand security,usabilitytests guidehowPHRs cantailorfunctions toindividualpreferences, PHRsaddvalue tousers'databymaking information moreaccessibleandunderstandable,andhealthcare organizationsshould buildtrustforPHRhealthcontent.

KaiserPermanenteNewsCenter. (2007). Kaiser Permanente connects teens online with their doctors. RetrievedApril29,2012, from http://xnet.kp.org/newscenter/pressreleases/co/2007/062607emailteens.html MoreandmorepeopleareusingtheInternettofindhealthinformationandmanyare clamoringfortheabilitytoconnect withtheir physicians byemail.Yet,themedical

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industry is slowtomeetthisdemandaccordingtothelatestHarrisInteractivepoll. Now,KaiserPermanenteColorado (KPCO)hasextendeditspatient‐physician email systemand onlinemedicalrecord toapopulationreadytobewired todotheir"health homework"online—teens.

Keoh,S.L.,Asim,M.,Kumar,S.S.,&Lenoir,P. J.(2011).SecureSpontaneousEmergency AccesstoPersonalHealthRecord.Paperpresented atthe Proceedings of the 3rd International Workshop on Security and Privacy in Spontaneous Interaction and Mobile

Phone use in Conjunction with Pervasive 2011, SanFrancisco,CA,USA.Retrieved fromhttp://syeloong.co.uk/Documents/iwssi‐spmu2011‐01.pdf Weproposeasystemwhichenablesaccesstotheuser'sPersonal HealthRecord(PHR) inthe event ofemergency.The accesstypicallyoccursinanad‐hocandspontaneous mannerandtheuserisusuallyunconscious,hencerenderingthe unavailabilityofthe user'spasswordtoaccessthePHR. Theproposedsystemincludes asmartcardcarried bytheuseratalltimeanditis personalizedwithapseudosecret, an URLtothePHR Server, asecretkeysharedwith thePHRServerandanumberof redemptiontokens generatedusingahash chain.In eachemergencysession, aone‐time useredemption tokenisissuedbythesmartcard,allowingtheemergencydoctortoretrievetheuser's PHRuponsuccessfulauthenticationofhiscredentialsandvalidationoftheredemption token. The serverreturnsthe PHRencrypted withaone‐timesession keywhich can onlybedecryptedbytheemergencydoctor.Thedevisedinteractionprotocolto facilitateemergencyaccesstothe user'sPHRissecureandefficient.

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Reti,S.R.,Feldman,H.J.,Ross,S.E.,&Safran,C. (2010). Improvingpersonalhealthrecords forpatient‐centeredcare. Journal of the American Medical Informatics Association, 17(2),192‐195.doi:10.1136/jamia.2009.000927 OBJECTIVE:Toassess thepatient‐centeredness ofpersonalhealthrecords(PHR)and offer recommendations forbestpracticeguidelines.DESIGN:Semi‐structured interviews wereconductedinsevenlarge earlyPHRadopterorganizations in2007. Organizationswerepurposivelyselectedtorepresentavariety of US settings, includingmediumandlargehospitals,ambulatorycarefacilities,insurersandhealth plans,governmentdepartments,andcommercialsectors.MEASUREMENTS:Patient‐centerednesswasassessedagainstaframeworkofcarethatincludes:(1)respectfor patientvalues,preferences,and expressedneeds;(2)informationandeducation;(3) accesstocare;(4)emotionalsupporttorelievefear and anxiety;(5)involvement of familyandfriends;(6)continuityandsecuretransitionbetweenhealthcareproviders; (7)physicalcomfort;(8)coordinationofcare. Withinthis framework weused evidence for patientpreferences (whereitexists)tocompareexistingPHRpolicies, andproposeabestpracticemodel.RESULTS:Mostorganizations enablemanypatient‐centered functionssuchasdataaccessforproxies andminors. Noorganization allows patientviewsofclinicalprogress notes,andturnaround times for PHRreportingof normallaboratoryresultscanbe upto7days.CONCLUSION:Findingssuggest patient‐centerednessforpersonalhealth recordscanbeimproved,andrecommendationsare madeforbestpractice guidelines.

Weitzman, E.R.,Kaci,L.,&Mandl, K.D.(2010).Sharing medicaldataforhealth research: Theearlypersonalhealthrecordexperience. Journal of Medical Internet Research,

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12(2),e14. doi:10.2196/jmir.1356 BACKGROUND:Engagingconsumersinsharinginformationfrompersonallycontrolled healthrecords(PCHRs)forhealthresearchmaypromotegoalsof improvingcareand advancing publichealthconsistent withthe federalHealth InformationTechnologyfor EconomicandClinicalHealth(HITECH)Act.Understandingconsumerwillingness to sharedata iscriticalto advancingthismodel.OBJECTIVE: The objectivewasto characterize consumerwillingness tosharePCHRdatafor health researchandthe conditions andcontextsbearingonwillingnesstoshare. METHODS:Amixedmethod approachintegratingsurveyand narrativedatawasused.Survey data werecollected aboutattitudestoward sharing PCHRinformationforhealthresearchfromearly adopters(n=151)ofa livePCHR populatedwithmedicalrecordsand self‐reported behavioral andsocialdata.Data wereanalyzedusingdescriptivestatisticsandlogistic regressiontocharacterizewillingness,conditionsforsharing, andvariationsby sociodemographicfactors.Narrativedatawerecollectedthrough semistructured focus groupandone‐on‐oneinterviews withaseparatesampleofcommunitymembers(n= 30)followingexposuretoPCHRdemonstrations.Twoindependent analystscoded narrativedatafor majorandminorthemesusingasharedrubric ofaprioridefined codesandaniterativeinductive process.Findingsweretriangulated withsurvey resultstoidentifypatterns.RESULTS:OfPHCRusers,138outof151(91%)were willingtosharemedicalinformationforhealth research with89(59%)favoringan opt‐insharingmodel.Willingness tosharewasconditionedbyanonymity,research use,engagementwithatrustedintermediary, transparencyaroundPCHRaccessand use,andpayment.Consumer‐determinedrestrictionson contentand timingof sharing

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maybeprerequisitestosharing. Selectdifferencesin support forsharingunder differentconditionswereobservedacrosssocialgroups.Nogenderdifferenceswere observed;howeverdifferencesinage,role,and self‐rated healthwerefound.For example,studentswere morelikely thannonstudentsto favoran opt‐outsharing default(unadjustedoddsratio[OR]=2.89,95%confidenceinterval[CI]1.10‐7.62,P =.03).Participantsoverage50 werelesslikelythanyounger participantsto report thatpaymentwouldincreasewillingness toshare(unadjustedOR = 0.94,95% CI0.91‐ 0.96,P<.001).Studentsweremorelikelythannonstudentsto report that payment wouldincreasetheirwillingness toshare(unadjustedOR9.62, 95% CI3.44‐26.87,P< .001).Experiencing a publichealthemergency mayincreasewillingnesstoshare especiallyamongpersonsover50 (unadjusted OR1.03,95%CI1.01‐ 1.05,P=.02); however,studentswerelesslikely thannon‐studentstoreport thisattitude (unadjustedOR0.13,95%CI0.05 ‐0.36,P<.001).Finally,subjectswithfairor poor self‐ratedhealthwerelesslikelythanthosewithgoodtoexcellentself‐ratedhealthto reportthat willingness tosharewouldincreaseduring a public healthemergency (unadjustedOR0.61,95%CI0.38 ‐0.97,P=.04).CONCLUSIONS: Strongsupportfor sharingof PCHRinformation for healthresearchexistedamongearly adoptersand focusgroupparticipants,withsupportvaryingbysocialgroup underdifferent conditions andcontexts.Allowing userstoselecttheirpreferredconditionsforsharing maybevital tosupportingsharing andfosteringtrustas maybedevelopmentofsafety monitoring mechanisms.

Wiljer,D.,Urowitz,S.,Apatu,E.,DeLenardo, C.,Eysenbach,G.,Harth,T.,...Canadian CommitteeforPatient Accessible HealthRecords.(2008).Patient accessibleelectronic

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http:unadjustedOR0.61,95%CI0.38

 

          

healthrecords:exploringrecommendations forsuccessfulimplementation strategies. Journal of Medical Internet Research, 10(4),e34.doi:10.2196/jmir.1061 BACKGROUND:Providingpatients withaccess totheir electronic healthrecordsoffers greatpromisetoimprovepatienthealthandsatisfaction withtheircare,aswellto improveprofessionalandorganizationalapproachestohealthcare. Althoughmany benefitshavebeen identified,therearemanyquestionsaboutbestpracticesfor the implementationofpatientaccessibleElectronicHealth Records (EHRs).OBJECTIVES: Todevelop recommendations toassisthealth careorganizations inprovidingpatients withaccesstoEHRsinameaningful,responsible,andresponsivemanner.METHODS: APatientAccessibleElectronicHealthRecord(PAEHR)Workshop washeldwith nationallyandinternationallyrenownedexpertstoexploreissuesrelatedtoproviding patientaccesstotheEHRandmanaginginstitutionalchange.RESULTS:ThePAEHR Workshopwasattendedby45participantswhodiscussedrecommendationsforthe implementationofpatientaccessibleEHRs.Recommendationswere discussed under foursubjectdomains:(1)providingpatientaccesstothe EHR, (2)maintainingprivacy andconfidentialityrelatedtothePAEHR,(3)patienteducation andnavigationofthe PAEHR,and(4)strategiesformanaging institutionalchange.Thediscussionfocused ontheneedfornationalinfrastructure,cleardefinitions for privacy,securityand confidentiality,flexible, interoperablesolutions,andpatient andprofessional education.Inaddition, therewasa strongcall forresearch intoalldomainsofpatient accessibleEHRstoensuretheadoptionof evidence‐based practices.CONCLUSIONS: Patientaccesstopersonalhealth informationisafundamental issueforpatient engagement andempowerment.Healthcareprofessionalsandorganizationsshould

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consider thepotential benefitsandrisksofpatient access whendevelopingEHR strategies. Flexible,standardized, andinteroperablesolutions mustbeintegratedwith outcomes‐basedresearchtoactivateeffectivelypatients aspartnersintheirhealth care.

Yamin,C.K.,Emani,S.,Williams,D.H.,Lipsitz,S.R.,Karson,A.S.,Wald,J.S.,&Bates,D.W. (2011).Thedigitaldividein adoptionanduse ofapersonalhealthrecord. Archives of Internal Medicine, 171(6),568‐574. BACKGROUND:Personalhealthrecords(PHRs)offerthepotential to improvethe patientexperience and thequality ofpatientcare.However,the"digitaldivide," the population‐levelgapinInternet andcomputeraccess,maypreventcertaingroups fromaccessingthePHR.METHODS: Weconductedacross‐sectional analysisof a PHR within a northeastern healthsystem.Wecomparedadopters(ie, thoseactivatinga PHRaccountonline)withnonadopters(ie,thosewhosee aphysician offering thePHR butdonotactivatean account).WefurthercategorizedadoptersbyintensityofPHR use,measuredbynumberoflog‐insandnumberofmessagessent tophysicians' practices.RESULTS:As ofSeptember30,2009, among75,056patients,43%had adoptedthePHRsince 2002.BlacksandHispanicswerelesslikelytoadoptthePHR comparedwithwhites (oddsratio [OR],0.50; 95%confidenceinterval[CI],0.45‐0.55; and0.64;0.57‐0.73,respectively), andthose withlower annual incomewerelesslikely toadoptthePHRthanwerethose withhigher income.Comparedwithnonadopters, adoptersweremorelikelytohavemorethan2comorbidities(OR, 1.27;95% CI,1.17‐1.30).Useof anaggressivemarketingstrategy forPHRenrollmentincreasedadoption nearly 3‐fold(OR,2.92;95%CI,1.58‐5.40).Intensityofuse wasbest predictedby

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http:CI,1.17

 

          

increasingnumberofcomorbidities,followedbyrace/ethnicity (whitesmorethan blacksandHispanics)andinsurancestatus.We foundno associationbetweenincome andlog‐infrequencyorsecuremessagessent. CONCLUSIONS:Despiteincreasing Internetavailability, racial/ethnicminoritypatientsadopted aPHRlessfrequently thanwhitepatients,andpatientswiththelowestannualincome adoptedaPHR less oftenthanthosewithhigherincomes.Amongadopters,however, incomedidnot have aneffect onPHRuse.

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Attitudes‐Consumer: Annotated Bibliography

Atkinson,N. L.,Massett,H.A., Mylks,C.,Hanna,B.,Deering, M.J.,&Hesse,B.W.(2007). User‐centeredresearch onbreast cancerpatientneedsandpreferencesofan Internet‐basedclinicaltrialmatchingsystem. Journal of Medical Internet Research, 9(2),e13. doi:10.2196/jmir.9.2.e13 BACKGROUND:Internet‐basedclinicaltrialmatchingsystemshave thepotentialto streamline thesearchprocessfor womenwithbreastcancerseekingalternative treatments. Aprototypesystemwasdevelopedtoleverage thecapabilitiesofa personalhealthrecord systemfor thepurposeofidentifyingclinicaltrials.OBJECTIVE: Thisstudy examineshowbreastcancerpatientsperceiveand interactwitha preliminary versionof anInternet‐basedclinicaltrialmatchingsystem,whiletaking intoaccountthedemandsofdiagnosisandtreatmentdecisionmaking.METHODS: Breastcancerpatients participatedinsmallgroupdiscussions andinteractedwiththe prototype website ina two‐phase qualitative researchprocess. Thefirstphase exploredthe experienceofbreast cancerpatients(n= 8)with treatmentdecision making,initialresponsestothe ideaofInternet‐basedclinicaltrialmatchingsystems, andreactionstotheprototypesite.Inthesecondphase,a differentsetofbreastcancer patients(n =7)reviewedrevised websitecontent andpresentation andparticipatedin ausabilitytestinwhichtheyregisteredonthe systemandcompletedapersonalhealth recordtosetupthematchingprocess.RESULTS:Participantswereinitiallyskepticalof theprototypesystembecauseit emphasizedregistration, hada complicated registrationprocess,andaskedfor complexmedicalinformation.Changingcontent andattendingtousabilityguidelinesimprovedtheexperienceforwomeninthe

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secondphaseoftheresearchand enabledtheidentificationof functionality and contentissues,suchaslackof clearinformationanddirectionsonhowtousethe system.CONCLUSIONS:Thisstudy showedthatwomenfeltfavorablyabouttheideaof usingtheInternet tosearchfor clinicaltrialsbutthatsuch asystem neededto meet their expectations forcredibilityandprivacyandbesensitive totheirsituation. Developers canmeet theseexpectationsbyconformingtoestablishedusability guidelinesandtesting improvementswithbreastcancer patients.Futureresearchis neededtoverifythese findings and tocontinuetoimprovesystemsof thisnature.

Berry,J.G.,Goldmann,D.A.,Mandl,K.D.,Putney,H.,Helm, D.,O'Brien,J.,...Weinick,R.M. (2011).Healthinformationmanagement and perceptions ofthequalityofcarefor childrenwithtracheotomy:Aqualitativestudy. BMC Health Services Research, 11,117. doi:10.1186/1472‐6963‐11‐117 BACKGROUND:Children withtracheotomyreceivehealthcarefrom anarrayof providers within varioushospitalandcommunityhealth systemsectors.Previous studieshavehighlightedsubstandardhealthinformation exchangebetween families andthesesectors.The aimofthis studywastoinvestigatethe perceptionsand experiences ofparents andproviderswithregardtohealthinformationmanagement, careplandevelopmentandcoordination forchildrenwithtracheotomy,andstrategies toimprove healthinformationmanagement forthesechildren.METHODS:Individual andgroupinterviewswereperformedwitheightparentsandfifteen healthcare (primaryandspecialtycare,nursing,therapist,equipment)providersofchildrenwith tracheotomy.Theprimarytracheotomy‐associateddiagnosesforthechildrenwere neuromuscularimpairment(n=3),airway anomaly(n=2)andchroniclungdisease

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(n=3).Twoindependentreviewersconducteddeepreadingandline‐by‐linecodingof alltranscribedinterviewstodiscoverthemesassociatedwiththeobjectives.RESULTS: Children withtracheotomyinthis studyhadhealthcareproviderswithpoorlydefined rolesandresponsibilitieswhodid notactively communicatewithoneanother. Providers wereoften unsurewheretofinddocumentationrelatingtoachild's tracheotomyequipmentsettings andhomenursingorders,andperceivedthatthese situationscontributed tomedical errors and delayed equipment needs.Parents createdahomerecord thatwassharedwith multipleproviders totrackthecare that theirchildrenreceived butmanyconsideredthisaburdenbettersuitedtoproviders. Providersbenefitedfrom theparentrecords, butquestionedtheiraccuracyregarding criticaltracheotomycareplaninformationsuchasventilatorsettings. Parents and providers endorsedpotentialimprovement in thisenvironmentsuchasa comprehensive internet‐basedhealthrecordthatcouldbeshared amongparentsand providers, andbetween variousclinicalsites.CONCLUSIONS:Participantsdescribed disorganizedtracheotomycareandhealthinformationmismanagementthatcould helpguidefutureinvestigations intotheimpactofimprovedhealthinformation systemsfor childrenwithtracheotomy.Strategieswiththepotentialtoimprove tracheotomycaredeliverycould includedefinedrolesandresponsibilitiesfor tracheotomyproviders,andimprovedorganizationandparentsupportfor maintenanceofhome‐basedtracheotomyrecordswithweb‐basedsoftware applications,personal healthrecordplatforms andhealthrecorddataauthentication techniques.

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Bonney,W. (2011).TheuseofbiometricsinthePersonal Health Record(PHR). Studies in Health Technology and Informatics, 164,110‐116. Theemergenceofthe PersonalHealthRecord(PHR)hasmadeindividual health information morereadilyaccessibletoawide rangeofusersincludingpatients, consumers,practitioners,andhealthcareproviders.However,increasedaccessibility ofPHRthreatenstheconfidentiality,privacy, andsecurity of personalizedhealth information.Therefore, aneedforrobustandreliableformsof authentication is of primeconcern. Theconceptofbiometricauthenticationisnowhighlyvisibleto healthcare providers asatechnologytopreventunauthorizedaccess toindividual healthinformation.Implementing biometricauthenticationmechanismstoprotect PHRfacilitatesaccesscontrolandsecureexchangeofhealthinformation.Inthispaper, aliterature reviewisusedtoexplorethekeybenefits,technicalbarriers,challenges, andethicalimplications forusing biometricauthenticationin PHR.

Brennan,P. F.,Downs,S.,&Casper, G.(2010).ProjectHealthDesign:Rethinkingthepower andpotentialofpersonalhealthrecords. Journal of Biomedical Informatics, 43(5 Suppl),S3‐5.doi:10.1016/j.jbi.2010.09.001 ProjectHealthDesign,amulti‐year,multi‐siteprojectsponsoredbytheRobertWood JohnsonFoundationwithadditionalsupportfromtheCalifornia HealthCare Foundation,isdesignedtostimulateinnovation inpersonalhealthrecords(PHRs). ProjectHealthDesignteamsemployeduser‐centereddesignprocessestocreate designsand prototypes ofcomputer‐basedapplications tosupportandenhance humanhealthforawiderangeofpatients, fromchildrenwithchronichealth conditionstoelderstransitioningfromhospitaltohome.Aprogram designphilosophy

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encouraged designers toenvision PHRsasasuiteofpersonalhealthinformation managementtools,orapplications,separatefrom,butdrawingupon,personalhealth data froma varietyof sources. Inaddition toinformationcontainedinone'smedical record,thesepersonalhealthdata includedpatient‐suppliedclinicalparameterssuch asbloodglucoseanddailyweights; aswellaspatient‐generatedobservationsofdaily living(ODLs)‐theunique,idiosyncraticcues,suchassleepadequacyorconfidencein selfcare,thatinformpatients abouttheirabilitiestomanage healthchallengesand takehealthyaction.Acommontechnicalplatformprovidedinfrastructureservices suchasdatastandards andidentity‐managementprotocols,andhelpedto demonstrateascalable, efficientapproachtouser‐centereddesignof personalhealth information managementsystems.Theprogram'sethical,legalandsocialissues consultancyidentifiedchallengestoaccelerationofaction‐focusedPHRs:personal controlofprivacychoices,managementofprivacyinhomeconditions,andrebalancing powerstructuresinshareddecisionmaking.

Britto,M.T.,Jimison,H.B.,Munafo,J.K.,Wissman,J.,Rogers,M.L.,&Hersh,W.(2009). Usability testing finds problems fornoviceusersofpediatric portals. Journal of the American Medical Informatics Association, 16(5),660‐669.doi:10.1197/jamia.M3154 OBJECTIVE:Patientportalsmayimprovepediatricchronic diseaseoutcomes,butfew havebeen rigorouslyevaluatedforusabilitybyparents.Using scenario‐basedtesting withthink‐aloudprotocols,weevaluatedtheusabilityofportalsforparentsofchildren withcystic fibrosis,diabetesorarthritis.DESIGNSixteen parentsusedaprototypeand testdatato complete14tasks followedbyavalidatedsatisfaction questionnaire. Three iterationsoftheprototypewere used.MEASUREMENTS:Duringthe usabilitytesting,

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wemeasuredthetime ittookparticipantstocompleteorgiveuponeachtask. Sessionswerevideotapedandcontent‐analyzedforcommonthemes.Following testing,participantscompleted theComputer UsabilitySatisfaction Questionnaire whichmeasuredtheiropinionson theefficiencyofthesystem, itseaseofuse,and the likeabilityof thesysteminterface.A7‐pointLikertscale was used, withseven indicatingthehighest possible satisfaction.RESULTS:Mean taskcompletiontimes rangedfrom73(+/‐61)seconds tolocatea documentto431(+/‐286)secondsto graphlaboratoryresults.Tasks suchasgraphing,locationofdata, requesting access, anddata interpretation werechallenging.Satisfactionwas greatest for interface pleasantness (5.9+/‐0.7)andlikeability(5.8+/‐0.6)andlowestfor errormessages (2.3+/‐1.2)andclarityofinformation(4.2 +/‐1.4).Overall mean satisfaction scores improvedbetween iterationoneandthree.CONCLUSIONS:Despite parental involvementandprior heuristictesting,scenario‐basedtesting demonstrated difficulties innavigation,medicallanguagecomplexity,error recovery,andprovider‐basedorganizationalschema.Whilesuchusabilitytestingcanbeexpensive,the currentstudydemonstrates thatit canassist inmakinghealthcaresysteminterfaces forlaypersonsmoreuser‐friendly andpotentiallymorefunctionalfor patientsand their families.

Brownstein,C.A.,&Wicks,P.(2010).Thepotentialresearchimpactofpatient reported outcomesonosteogenesisimperfecta. Clinical Orthopaedics and Related Research, 468(10),2581‐2585.doi:10.1007/s11999‐010‐1373‐x BACKGROUND:Osteogenesisimperfecta(OI)isaninheritedconnectivetissuedisorder withmany phenotypic presentationsrangingfrommildtosevere. Itisoftencalled

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"brittlebone disease." Treatment consistsof physicaltherapy, surgicalinterventions, medicationsand,insomecases, experimentaltherapies. Because treatmentisnot standardizedandisoftenexperimental,informationonthesuccessofdifferent methodsisusuallynotavailable orwelldocumented.QUESTIONS/PURPOSES:We thereforeaskedif socialnetworkingcanmakeOIpatients'livesbetter.Howwoulda bonedisordercommunitywork?Is itpossibleforpatients toknowhowwelltheyare doingincomparisontootherslikethem,andiftheyaregetting the mostsuccessful treatment fortheirdisease?METHODS:AnevaluationofhowPatientsLikeMe(R),a personalresearchand socialnetworkingwebsite anddatabaseforpatientswith life changing illnesses,can aidinimprovingpatientoutcomesthroughtheanonymous sharingof medicalinformation.RESULTS:PatientsLikeMe(R)couldhelppatients answerthequestion,"Givenmycondition,whatisthebestoutcomeIcouldhopeto achieve, and howdoIgetthere?" Participants couldrecordtheirreal‐timeday‐to‐day progressin achievingtheirtreatmentgoals,suchaspreventing fractures,andshare thatwiththecommunitytohelppatients,caregivers,researchersand industrylearn moreaboutOI.CONCLUSIONS:Socialnetworkingcanchange thelivesofOsteogenesis Imperfecta patients for thebetter,andmakethemapartofthe treatmentdiscovery process.HerewepresentapossibleOIonline community anddemonstrateits potentialutility forpatients andmedicalprofessionalsalike.

Burke,R.P.,Rossi,A.F.,Wilner,B. R.,Hannan, R.L.,Zabinsky,J.A.,& White,J.A.(2010). Transformingpatientandfamily accesstomedicalinformation: Utilisationpatternsof apatient‐accessibleelectronichealthrecord. Cardiology in the Young, 20(5),477‐484. doi:10.1017/S1047951110000363

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OBJECTIVE:Thepurposeofthisstudywastoevaluatetheutilisationof aweb‐based multimedia patient‐accessibleelectronichealthrecord,forpatientswithcongenital cardiacdisease.PATIENTSANDMETHODS:Thiswasaprospective analysisofpatients undergoing congenital cardiacsurgeryat asingleinstitutionfrom1September, 2006 to1February,2009.Aftermeetingswithhospitaladministration,physicians,nurses, andpatients,weconfiguredasubsetofthecardiacprogram'sweb‐basedclinical electronichealthrecord forpatientandfamilyaccess.TheElectronicHealthRecord continuouslymeasured frequency andtimeof logins,loginsduring andbetween hospitalisations,andpageviewsby type(imagingversustextualdata).RESULTS:Of thefirst270patientsoffered access tothesystem,252became users(93%adoption rate).Systemuptimewas99.9%, andnosecuritybreacheswere reported.Users accessedthesystemmoreoftenwhilethepatientswere inhospital(67%oftotal logins)thanafterdischarge(33% oftotallogins).Themaximum numberofloginsbya familywas 440,andtheminimumwas1.The average numberofloginsper familywas 25.Imaging datawere viewedsignificantlymorefrequently than textualdata(p 0.001).Atotalof12patientsdiedduringthestudyperiod and 11membersoftheir familiescontinuedto accesstheirElectronicHealthRecordsafterthe dateofdeath. CONCLUSIONS:Aweb‐basedPatient AccessibleElectronicHealthRecordwasdesigned forpatients withcongenitalcardiac disease.Theadoption rate washigh,and utilisationpatternssuggestthat the ElectronicHealthRecord couldbecomeauseful toolforhealthinformationexchange.

Caligtan, C. A.,&Dykes, P.C. (2011).Electronichealthrecordsandpersonalhealthrecords. Seminars in Oncology Nursing, 27(3),218‐228. doi:10.1016/j.soncn.2011.04.007;

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10.1016/j.soncn.2011.04.007 OBJECTIVES:Toprovideanoverviewof electronicpersonalhealthinformation technology.DATASOURCES:Peerreviewed researchstudies,review articles, andweb resources. CONCLUSION:Astechnologydevelopsandelectronichealthrecords becomemorecommon,patientsandclinicians areworking toward a safer,more personalformofhealthcaredelivery.IMPLICATIONSFORNURSING PRACTICE: Improving accessand inputtopersonalhealthinformationisstillin itsinfancy, but withgovernment funding,developmentofpatienthealth records will continueto grow.Patientsaretheconsumers ofhealthcareand arewitness totheparadigmshift ofaccessto healthinformationandchangesininformationcommunicationtechnology (ICT).Fortheoncologynurse,thetransformationofhealthcareandICTwillrequire nursestoeducatepatients andfamilymembersonavailableonline resourcesforself managementandhealthpromotion.

Clarke,J.L., Meiris,D.C., & Nash,D.B.(2006).Electronic personalhealthrecordscomeof age. American Journal of Medical Quality, 21(3Suppl),5S‐15S. doi:10.1177/1062860606287642–Theauthorsprovidebackgroundinformation distinguishingaPHR,fromEHR, andEMR.Theydescribeconsumerandprovider issuesthat maypreventusinga PHR.Theauthorsthengoonto proposingasolution‐ LifeSensor, whichisaWeb‐basedPHRthatis highlyprotectedandsecuredvia encryption, distributed datastorage,authorization,andauthentication.Itispatient centered and patientcontrolled,withutilityforphysicians to encouragetheir acceptance. Onlythepatienthas the righttograntaclinician accesstohisorherPHR.

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Cudney,S., Weinert, C.,&Kinion,E. (2011).Forgingpartnershipsbetween ruralwomen withchronicconditionsandtheir healthcare providers. Journal of Holistic Nursing : Official Journal of the American Holistic Nurses' Association, 29(1),53‐60. doi:10.1177/0898010110373656 Successfuladaptationto chronicillnessis enhancedbyactive client‐healthcare providerpartnerships. Thepurposesofthis articleareto(a) examine thehealthcare partnership needsof westernrural womenwithchronicillnesswhoparticipatedina computer‐basedsupportandeducationproject,(b)describehow theroleofthe womeninthepartnershipcanbe maximizedbytheuseofapersonal healthrecordand improving healthliteracy,and(c)discusswayshealthcareproviders canenhance theirrole in thepartnershipby carefullisteningandcreating environmentsconducive toforgingproductiveclient‐providerpartnerships.

Do,N.V.,Barnhill,R.,Heermann‐Do,K.A.,Salzman,K.L.,& Gimbel,R.W.(2011).The militaryhealthsystem'spersonalhealthrecordpilotwithMicrosoft HealthVaultand GoogleHealth. Journal of the American Medical Informatics Association, 18(2),118‐124. doi:10.1136/jamia.2010.004671 OBJECTIVE:Todesign, build,implement,and evaluateapersonal healthrecord(PHR), tetheredto theMilitary Health System,thatleveragesMicrosoft(R)HealthVaultand Google(R) Healthinfrastructurebasedonuserpreference.MATERIALSAND METHODS:Apilotprojectwasconductedin2008‐2009 atMadigan ArmyMedical Center in Tacoma,Washington.OurPHRwas architected toaflexibleplatformthat incorporatedstandards‐basedmodelsofContinuityofDocumentand Continuity of CareRecordtomapDepartmentof Defense‐sourcedhealthdata,viaasecureVeterans

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Administrationdatabroker,toMicrosoft(R)HealthVaultandGoogle(R)Healthbased onuserpreference. Theproject designandimplementationwere guidedbyprovider andpatient advisory panelswith formaluserevaluation.RESULTS:Thepilotproject included250 beneficiary users.Approximately73.2%of userswere < 65years ofage, and38.4% were female.Ofthe users,169(67.6%)selectedMicrosoft(R)HealthVault, and81(32.4%)selectedGoogle(R)HealthastheirPHRofpreference.Sample evaluation ofusersreflected100% (n=60)satisfiedwith convenience ofrecord access and91.7% (n=55)satisfiedwithoverallfunctionalityof PHR. DISCUSSION:Key lessonslearnedrelated todata‐transferdecisions(pushvspull),purposefuldelays in reportingsensitiveinformation,understandingandmappingPHR useandclinical workflow,anddecisionsoninformationpatientsmaychoosetosharewiththeir provider. CONCLUSION:Currently PHRsare beingviewedasempoweringtoolsfor patientactivation.Designand implementation issues(eg,technical,organizational, information security)aresubstantialandmustbethoughtfully approached.Adopting standardsintodesigncanenhance thenational goalofportabilityandinteroperability.

Fricton,J.R.,&Davies, D.(2008).Personalhealthrecordsto improve healthinformation exchangeandpatientsafety.In K. Henriksen, J.B.Battles,M. A.Keyes&M.L.Grady (Eds.), Advances in Patient Safety: New Directions and Alternative Approaches (Vol. 4: Technology and Medication Safety) ().Rockville(MD):AgencyforHealthcareResearch andQuality. Retrieved from http://www.ahrq.gov/downloads/pub/advances2/vol4/advances‐fricton_21.pdf Thepersonalhealthrecord(PHR) isproposedasaninnovativesolutiontothe problemsoffragmented communicationandlackofinteroperability amongdiverse

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http://www.ahrq.gov/downloads/pub/advances2/vol4/advances-fricton_21.pdf

 

          

electronicmedicalrecord(EMR) systems.It providesasinglesource(thepatient's PHR)forauthenticationandremoteaccessof thehealthinformationdatafromallEMR systems.A voluntarysurveywas offeredtoselectedpatients,caregivers,andhealth providersof theWillmar,MN,PHRprojecttodetermine ifa PHR wasusefultothese stakeholders,andifso,whataspectsofaPHRwouldbemosthelpfulincaringfor patients.Thesurveyresponsesrevealednearly universal interestbybothpatientsand healthproviders inusingthePHR regularlyforaccessing andexchanginghealth information, including medication andmedicalhistoryreconciliation andpatient education. Thehighest utilizationwouldresultfromacommunity‐basedPHR implementation that wasowned andcontrolledbytheconsumerandwasportable amongproviders,plans,andemployers.

Grossman,J.M.,Zayas‐Caban, T.,&Kemper,N.(2009).Informationgap:Can healthinsurer personalhealthrecordsmeetpatients'andphysicians'needs? Health Affairs (Project Hope), 28(2),377‐389. doi:10.1377/hlthaff.28.2.377 Personalhealthrecords(PHRs),centralizedplacesforpeopletoelectronicallystore andorganize theirhealthinformation,canbenefitbothpatientsanddoctors.This qualitative studyofhealthinsurers'PHRsforenrollees revealspotentialbenefitsand challenges. Insurers'abilitytoputclaims‐baseddata into the PHRoffersanadvantage. However,consumersareconcerned aboutsharingpersonalhealth informationwith insurers and aboutInternetsecurity.Physiciansquestion (1)thevalidityofclaimsdata inmakingtreatmentdecisionsand(2)whetheraccessingthesePHRsisworththe disruptionstotheirworkflow.Thispaperofferspossiblesolutionsthatmayleadto morewidespreadadoptionof insurerPHRs.

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Haggstrom,D.A.,Saleem,J.J.,Russ,A.L.,Jones,J.,Russell,S.A.,&Chumbler,N.R.(2011). Lessonslearned fromusabilitytestingof theVA'spersonal healthrecord. Journal of the American Medical Informatics Association, 18 Suppl 1,i13‐7.doi:10.1136/amiajnl‐2010‐000082 Inorder to create user‐centereddesigninformation toguidethedevelopmentof personalhealthrecords(PHRs),24patientsparticipated inusability assessmentsof VA'sMyHealtheVetprogram.Observationalvideosand efficiency measureswere collectedamongusersperforming fourPHRscenarios:registration andlog‐in, prescription refill,trackinghealth,andsearchingforhealth information.Twenty‐five percentof userssuccessfullycompletedregistration.Individualspreferred prescription numbersovernames, sometimes duetoprivacyconcerns.Onlyefficiency inprescriptionrefillswassignificantlybetterthan targetvalues.Users wantedto print their informationtosharewiththeirdoctors,andquestionedthe valueof MyHealtheVetsearchfunctionsoverexisting onlinehealthinformation.Insummary, PHRregistrationmust balancesimplicityand security,usabilitytests guidehowPHRs cantailorfunctions toindividualpreferences, PHRsaddvalue tousers'databymaking information moreaccessibleandunderstandable,andhealthcare organizationsshould buildtrustforPHRhealthcontent.

Hargreaves, J.S.(2010).Willelectronicpersonalhealthrecordsbenefitprovidersand patientsin ruralAmerica? Telemedicine Journal and e‐Health, 16(2),167‐176. doi:10.1089/tmj.2009.0063 PURPOSE: Theobjectiveofthisstudywastoeducatestakeholders(e.g.,providers, patients,insurers,government) in thehealthcareindustry aboutelectronicpersonal

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healthrecords(PHRs)andtheirpotentialapplicationinrural America.METHODS: Extensiveresearchwasperformed onPHRsthroughstandardliterature search, productdemonstrations,educationalwebinars,andfactfinding via newsreleases. RESULTS:Variousstakeholdersareeagerto transformthehealthcareindustryintothe digitalagelikeotherindustries(i.e.,banking, retail).Despitelowadoptionof PHRsin 2008(2.7% ofU.S.adults),patients areinterestedinsecuremessagingandeVisitswith theirphysicians,online appointmentschedulingand reminders, and online accessto theirlaboratoryandradiologyresults.Federal agencies(e.g., HealthandHuman Services,DepartmentofDefense, Veterans Affairs[VA]),popularinformation technology(IT)vendors(e.g., Google,Microsoft),andlargeinsurers(e.g.,Aetna) have energizedtheindustry throughpilotprogramsandnewproductannouncements.It remainsto beseen ifbarriersto adoption,includingprivacyconcerns,lackof interoperabilitystandardsand funding,andproviderresistance,canbeovercometo enablePHRstobecomeacritical toolinthecreationof amore efficientandlesscostly U.S.healthcareindustry.CONCLUSIONS:ElectronicPHRsholdgreat promiseto enhance accessand improvethequalityofcareprovided topatients inruralAmerica. Government,vendors, andinsurersshouldcreate incentivesfor providersandpatients toimplementPHRs.Likewise,patients needtobecomemoreaware ofPHRsandtheir abilityto improvehealthoutcomes.

Hess,R.,Bryce,C.L.,Paone,S.,Fischer,G.,McTigue,K.M., Olshansky, E.,...Siminerio,L. (2007).Exploringchallengesandpotentialsof personalhealth recordsindiabetesself‐management:implementation and initialassessment. Telemedicine Journal and e‐Health : The Official Journal of the American Telemedicine Association, 13(5),509‐517.

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doi:10.1089/tmj.2006.0089 TheUniversityof PittsburghMedicalCenter(UPMC)has implementedapersonal healthrecordgroundedintheChronicCareModel,UPMC HealthTrak, toassistpatients withdiabetesself‐management.UPMCHealthTrak isbasedin the physicianoffice and connectsthepatient,physician, andelectronic medicalrecord (EMR).Its functionalitiesincludesecure,electroniccommunicationwiththephysician'soffice, alongwith preventive healthcare reminders, anddisease‐specifictoolsand information. Inthispaper,wedescribechallengestooffice‐basedimplementation of andinitialpatient reactionto thetechnologyinthecontext ofdiabetes care.UPMC has deployeda secureWeb‐basedpatientportal,UPMCHealthTrak.We implemented UPMCHealthTrakintheambulatory settingandassesseditsimpact onpatient‐practicecommunication.Weconducted1090‐minutefocusgroups (fivepre‐andfive postimplementation)toassesspatientreaction toUPMC HealthTrak. Focusgroups were analyzedusinggroundedtheorytechniques.Duringtheperiod September2004‐January2007,therewasnosignificantchange innumberofpatient encountersor telephonecallsreceivedinouroffice,butthenumberofHealthTrak messages increased. Our39pre‐andpostimplementationfocusgroupparticipantsfeltthatthe systemwouldenhance communicationwiththeoffice,and thattheremindersystem wouldbehelpful.Theyalsolikedhavingaccesstolaboratorytests remotely.They were frustratedwhentestswere notreleased andmessagesnotanswered. A Web‐basedpatientportalcan beintegratedintoaclinicaloffice, althoughpatientsmay not quicklychangecommunicationpatterns.Patientsareresponsive totechnology.Future

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workshouldfocusondiabetes‐relatedoutcomesassessmentandintensifying interventions.

Hoerbst,A.,Kohl,C.D.,Knaup,P.,&Ammenwerth,E.(2010).Attitudesandbehaviors relatedtotheintroductionofelectronichealthrecordsamong AustrianandGerman citizens. International Journal of Medical Informatics, 79(2),81‐89. doi:10.1016/j.ijmedinf.2009.11.002 BACKGROUND:Acceptancebycitizensseemstobecrucialforthe futuresuccessofan electronichealthrecord (EHR)inGermanyandAustria. Weanalyzedcitizens' knowledge andexpectationsabout theconceptand contentsofan EHR.Wealso addressed possiblefearsandbarriers,andwe investigateddesiredEHRfunctionalities relevantto citizensintheAustrian andGermanpopulation.METHODS:Standardized interviews ofaconvenience sampleof203 Austrianand293German citizensrecruited intwometropolises.RESULTS:Up tothree‐quarterofthe interviewedcitizensalready collectandstoremedicaldocumentsathome,mostlyinpaper‐based form.No respondentshadalreadyusedan Internet‐basedpersonalhealth record.Between80% and90%of respondentsweresupportiveof theideaof anelectronic exchangeof health‐relateddatabetweenhealthcareprovidersascorefunctionalityofanEHR. However, manyrespondentsformulatedconcernswith regardtodataprotectionand datasecuritywithinanEHR.The EHRfunctionalitiesmostsupportedbyrespondents includedtheelectronic vaccination record,online information ondoctorsand hospitals,andtheadministrationof appointments andreminders. CONCLUSION:The resultsindicateagenerallypositiveattitude towardsthe EHR. However,thestudy

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showsthatdataprotectionis an issueformanycitizens,andthatdespitestrong media discussion, thereare informationdeficitswithregardtothenationalEHRinitiatives.

Kaelber,D.C.,Jha,A.K.,Johnston,D.,Middleton,B.,&Bates, D.W.(2008).Aresearch agenda for personalhealthrecords (PHRs). Journal of the American Medical Informatics Association, 15(6),729‐736.doi:10.1197/jamia.M2547 Patients,policymakers, providers, payers, employers,andothershaveincreasing interest in usingpersonalhealthrecords(PHRs)toimprovehealthcarecosts,quality, andefficiency.WhileorganizationsnowinvestmillionsofdollarsinPHRs,thebest PHRarchitectures,valuepropositions,anddescriptionsarenot universallyagreed upon.Despitewidespreadinterest andactivity,littlePHR researchhasbeendoneto date,andtargetedresearchinvestmentinPHRsappears inadequate. Theauthors reviewed theexistingPHRspecific literature(100articles)anddividedthearticles intosevencategories,of whichfourinparticular‐‐evaluation ofPHRfunctions, adoptionandattitudes ofhealthcareproviders andpatients towardsPHRs,PHR relatedprivacyandsecurity,andPHRarchitecture‐‐presentimportant research opportunities.Wealso brieflydiscussotherresearchrelatedtoPHRs, PHRresearch fundingsources,and PHRbusinessmodels.WebelievethatadditionalPHRresearch canincrease thelikelihoodthatfuturePHRsystemdeployments willbeneficially impacthealthcarecosts, quality,andefficiency.

Kelso,L.,&Walker,R.(2009).The consumerviewof PHRs.Observationalstudyfindsmost valuePHRs,butissuesremain. Journal of AHIMA / American Health Information Management Association, 80(10),56‐7,59.

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In2008,an observationalstudyattemptedto determine thelikelihoodthatpeople wouldcompleteaPHR.Italsosoughttofindthelevelofeffortpeoplebelievethey wouldmake tocreateanaccurate PHRanddeterminehowpeoplethoughttheywould useone.AHIMAusedapaperform forthePHRinthisstudy.Fifty‐onepercent said theywereveryorsomewhatlikely tocompleteaPHRforthemselvesorsomeoneelse; 22%alreadyhadaPHR.

Lowes,R.(2006).Personalhealth records:What'sthestatusnow? Medical Economics, 83(4),TCP13‐4,TCP16. Consumeroriented articledescribingtheapplicabilityofaPHR tovariousconsumer situations.

MarkleFoundation.(2008). Americans overwhelmingly believe electronic personal health records could improve their health. Retrieved April22,2011,from http://www.markle.org/sites/default/files/ResearchBrief‐200806.pdf ProfessorAlanF.WestindevelopedandKnowledgeNetworksconductedasurvey among1,580American adults(18+)nationwide,May13‐22,2008, commissionedby theMarkle Foundation. Thesurveyexamined publicopinionsonthepotentialand privacyconsiderations ofindividuallycontrolledelectronic personalhealthrecords (PHRs). Itisthe firstnationalsurvey toexploreconsumerperceptions aboutPHRsinthe contextoftheentranceofGoogle,Intuit,Microsoft,RevolutionHealth andWebMDin themarketplace,andtomeasure perceptions oftheimportanceofprivacypracticesin consumers’decisionto adoptsuchservices.Theresultsdocumentedfirmattitudesina

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http://www.markle.org/sites/default/files/ResearchBrief-200806.pdf

 

          

majorityof adultssurveyedregardingprivacypractices inthe unfoldingworldof onlinePHRservices.

McInnes,D.K.,Solomon,J.L.,Bokhour,B.G.,Asch,S.M.,Ross,D.,Nazi,K.M.,&Gifford,A.L. (2011).Useofelectronicpersonal healthrecordsystems toencourageHIVscreening: Anexploratorystudyofpatientand providerperspectives. BMC Research Notes, 4,295. doi:10.1186/1756‐0500‐4‐295 ABSTRACT: BACKGROUND:Whendetected,HIVcanbeeffectivelytreatedwith antiretroviraltherapy. Neverthelessinthe U.S.approximately 25%ofthosewhoare HIV‐infecteddonotknowit.Muchremainsunknownabouthowto increaseHIV testingrates.NewInternetoutreachmethodshavethepotential toincrease disease awarenessandscreeningamongpatients, especiallyaselectronicpersonalhealth records(PHRs)becomemorewidelyavailable.IntheUS Departmentof Veterans' Affairsmedicalcaresystem,900,000veterans haveindicatedan interestinreceiving electronichealth‐relatedcommunications throughthePHR.Thereforewesoughtto evaluate theoptimalcircumstancesandconditionsforoutreach aboutHIVscreening. Inanexploratory,qualitativeresearchstudyweexamined patientand provider perceptions ofInternet‐basedoutreachtoincreaseHIVscreening amongveterans who usetheVeterans HealthAdministration(VHA) healthcaresystem.FINDINGS:We conductedtworoundsoffocusgroupswithveteransand healthcare providers atVHA medicalcenters. Thestudy'sfirstphaseelicitedgeneralperceptions ofanelectronic outreachprogramtoincreasescreeningforHIV,diabetes, andhighcholesterol.Using phase1results,outreachmessage texts were draftedand thenpresented to participants inthesecondphase.Analysisfollowedmodified groundedtheory.Patients

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andprovidersindicatedthatelectronicoutreachthroughaPHR wouldprovideuseful information andwouldmotivate patientstobe screenedfor HIV. Patientsbelievedthat electronicinformationwouldbe moreconvenientandunderstandablethan information providedverbally.Patientssawlittledifferencebetween messages about HIVversusaboutdiabetesandcholesterol.Providers,however, feltpatientswould disapprove ofHIV‐relatedmessagesduetostigma.Providersexpected increased workloadfromtheelectronicoutreach,andthussuggestedaddingprimarycare resourcesanddevisingmethodsto smooththeflowofpatientsgetting screened. When provideda choicebetweenunsecuredemailsversusPHRsasthedeliverymechanism fordisease screening messages,bothpatientsandproviderspreferred PHRs. CONCLUSIONS:There isconsiderablepotential tousePHRsystems forelectronic outreachand socialmarketingtocommunicatetopatients about, andincreaseratesof, diseasescreening, includingforHIV.Planning fordirect‐to‐patientcommunications throughPHRsshouldincludeproviders andaddressproviderreservations, especially aboutworkloadincreases.

Montelius, E.,Astrand, B.,Hovstadius,B.,&Petersson,G.(2008).Individualsappreciate having theirmedicationrecordon theweb:A surveyofattitudes toa national pharmacyregister. Journal of Medical Internet Research, 10(4),e35. doi:10.2196/jmir.1022 BACKGROUND:Manypatients receivehealthcareindifferentsettings.Thus,a limitationofclinicalcaremaybeinaccuratemedicationlists, since dataexchange betweensettingsisoftenlacking andpatientsdonotregularly self‐reportonchanges intheirmedication.Healthcareprofessionals andpatients are bothinterestedin

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utilizingelectronichealthinformation.However,opinionisdividedastowhoshould takeresponsibility for maintainingpersonal healthrecords.In Sweden,the governmenthaspassedalawtoenforce andfundanationalregister ofdispensed medications.Theregistercomprisesallindividualswithdispensed medications(6.4 millionindividuals,September 2006)andcanbeaccessedbythe individualonlinevia "Mydispensedmedications". The individualhastherighttorestrictthe accessibilityof theinformationinhealthcaresettings.OBJECTIVE: Theaimof thepresentstudy was toevaluatetheusers'attitudes towardstheiraccessto"Mydispensedmedications"as partofa newinteractiveInternet service on prescribed medications.METHOD:A password‐protectedWebsurvey was conductedamongafirstgroup ofusersof"My dispensed medications".Datawas anonymouslycollectedand analyzedwithregard to theusefulnessanddesignof the Website,therespondents'willingnesstodiscusstheir "Mydispensedmedications"with others,their reasons for access,and theirsourceof information abouttheservice.RESULTS:Duringthestudyperiod (January‐March, 2007),all7860unique sitevisitors were invitedtoanswerthe survey. Invitations were acceptedby 2663individuals,and 1716respondedtotheonline surveyyieldinga view rateof21.8%(1716/7860)anda completionrateof64.4%(1716/2663).The completenessrate foreachquestionwasintherangeof 94.9%(1629/1716)to99.5% (1707/1716).Ingeneral,therespondents'expectations oftheusefulnessof"My dispensed medications"werehigh (totalmediangrade5;InterQuartileRange [IQR]3, onascale1‐6).Theywerealso positiveaboutthedesignoftheWebsite(totalmedian grade 5;IQR1,onascale1‐6). Thehighgradeswere not dependent onageor number ofdrugs.A majorityof therespondents,60.4%(1037/1716),had learnedabout"My

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dispensed medications"frompharmacies.70.4%(1208/1716)ofall respondentssaid theyvisited "Mydispensedmedications"togetcontroloranoverview oftheirdrugs. Gettingcontrolwasa morecommon (P<.001)answer fortheelderly(age75 or above),whereascuriositywasmorecommon(P<.001)fortheyoungeragegroup(18‐44years).CONCLUSION:Wefoundthatusersoftheprovider‐based personal medication record"My dispensed medications"appreciatedtheaccesstotheir record. Sincewe foundthattherespondentslikedthedesignof theWeb siteandperceived thattheinformationwaseasyto understand,thestudyprovided noreasonforsystem changes.However,aneedformoreinformationabouttheregister, and toextend its use,wasrecognized.

Or,C.K.,Karsh,B.T.,Severtson,D.J.,Burke,L.J.,Brown, R.L.,&Brennan,P.F.(2011). Factorsaffectinghomecarepatients'acceptanceofaweb‐based interactiveself‐managementtechnology. Journal of the American Medical Informatics Association, 18(1),51‐59.doi:10.1136/jamia.2010.007336 OBJECTIVE:Withtheadventofpersonalhealthrecordsandother patient‐focused healthtechnologies,there isagrowingneed tobetterunderstandfactorsthat contributetoacceptance anduse ofsuchinnovations.Inthisstudy,weemployedthe UnifiedTheoryof Acceptanceand UseofTechnologyasthebasis fordeterminingwhat predictspatients'acceptance(measuredbybehavioralintention)and perceived effectiveuseofaweb‐based,interactiveself‐managementinnovation amonghome carepatients.DESIGN:Cross‐sectionalsecondaryanalysis ofdata fromarandomized fieldstudy evaluating a technology‐assistedhomecarenursing practicewithadults withchroniccardiacdisease.MEASUREMENTANDANALYSIS:Aquestionnaire was

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designedbasedonvalidatedmeasurement scalesfrompriorresearchandwas completedby101participantsfor measuring theacceptanceconstructsaspartofthe parentstudyprotocol.Latentvariablemodelingwithitemparcelingguided assessmentofpatients' acceptance.RESULTS:Perceivedusefulnessaccountedfor 53.9%ofthevariability inbehavioralintention, themeasure ofacceptance.Together, perceivedusefulness,healthcareknowledge,andbehavioralintention accountedfor 68.5%ofthevariance inperceived effectiveuse.Perceivedeaseof useandsubjective normindirectlyinfluencedbehavioralintention,throughperceived usefulness. Perceivedeaseofuseandsubjectivenormexplained48%ofthe totalvariance in perceivedusefulness. CONCLUSION: Thestudydemonstratesthatperceived usefulness, perceivedeaseofuse,subjectivenorm,andhealthcareknowledgetogether predictmost ofthevarianceinpatients'acceptanceandself‐reported useoftheweb‐basedself‐managementtechnology.

Patel,V.N.,Abramson,E.,Edwards,A.M.,Cheung,M.A.,Dhopeshwarkar,R.V.,& Kaushal,R. (2011).Consumerattitudestoward personal healthrecordsin a beaconcommunity. The American Journal of Managed Care, 17(4),e104‐20. OBJECTIVE: Tocharacterize consumers'attitudesaboutpersonal healthrecords (PHRs),electronictoolsthatenableconsumerstosecurelyaccess,manage,and share theirhealthinformation,inacommunityparticipating in healthinformation technologyinitiatives. STUDYDESIGN:Cross‐sectionalstudy.METHODS:Arandom‐digit‐dialtelephonesurveyaboutPHRswasconductedamongadultresidentsof New YorkState's greaterBuffaloregion. Multivariateregressionanalysesidentifiedfactors associated withpotentialPHRuse.RESULTS:Weobtaineda79%(n =200)response

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rate.Many respondents (70%)wouldpotentiallyusePHRs.Consumerswanted PHRs toincorporateanarrayofinformation,includingimmunization records(89%)and providers visited(88%).Theyexpressedinterest inseveralonline activities,including accessing theirfamily members'healthcare information(71%).PotentialPHRusewas associated withperceptionsthat PHRswouldimproveprivacyand securityofmedical information(oddsratio [OR]4.7; 95%confidenceinterval [CI] 1.1,20.1), understandingregardinghealth(OR3.7;95%CI1.3,11.1),and overallqualityofcare (OR3.6;95%CI1.2,10.6).PotentialPHRusewasassociatedwithannualhousehold incomeof morethan $30,000(OR3.9;95% CI1.3,11.9)andexperiencelookingup healthinformationonline(OR3.0; 95%CI1.1, 8.1).CONCLUSIONS:Consumers expressedgreat interest inusingPHRsandwantedcomprehensive PHRs.However,the "digitaldivide"betweenthosewithvaryinglevelsof Internet experienceandconcerns aboutPHRs'effect onprivacy andsecurityof medicalinformationmaylimituse. Designing PHRsthatincorporateconsumerpreferencesanddevelopingpoliciesthat address thesebarriers mayincreaseconsumers'PHRuse.

Patel,V.N.,Dhopeshwarkar,R.V., Edwards,A.,Barron,Y., Sparenborg,J.,&Kaushal,R. (2010).ConsumerSupportforHealthInformationExchangeand Personal Health Records:A RegionalHealthInformationOrganizationSurvey. Journal of Medical Systems, doi:10.1007/s10916‐010‐9566‐0 Inorder to characterize consumersupportforelectronichealth informationexchange (HIE)andpersonalhealthrecords(PHRs)inacommunity whereHIEisunderway,we conductedasurveyof Englishspeaking adultswhovisitedprimarycarepractices participatingina regionalcommunity‐wideclinicaldata exchange,duringAugust,

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2008.Amongstthe 117respondents,amajoritysupportedphysicians'useofHIE (83%)orexpressed interestinpotentiallyusingPHRs(76%).Consumers'comfort sendingpersonalinformationelectronicallyovertheInternet andtheirperceptions regardingthepotential benefitsof HIEwereindependentlyassociatedwiththeir supportforHIE.Consumers'prior experience usingtheInternet tomanage their healthcare, perceptions regardingthepotential benefitsof PHRsandcollegeeducation were independentlyassociatedwithpotential PHRuse.Bolsteringconsumersupport forHIEandPHRswillrequireaddressingprivacyandsecurityconcerns, demonstratingclinical benefits, andreachingouttothosewho arelesseducated and computerliterate.

Teixeira, P.A.,Gordon, P.,Camhi,E.,&Bakken, S.(2011).HIVpatients'willingness toshare personalhealthinformation electronically.[Willingnessto sharePHIwaspositively associated withtrustandrespect ofclinicians.] Patient Education and Counseling, 84(2),e9‐12.doi:10.1016/j.pec.2010.07.013 OBJECTIVE:Toassess theattitudes ofpersons livingwith HIV/AIDS(PLWH)towards havingtheirpersonalhealthinformation(PHI)storedandsharedelectronically. METHODS:PLWH(n=93)inNewYorkCitycompletedsurveysusing audiocomputer‐assistedself‐interview (ACASI)thatassessed willingness tosharetheirPHIwith variouspeopleandentitiesvia a secureelectronicnetwork.Thesurveyalsoincluded questionson satisfactionwithandtrustofhealthcareproviders,currenthealth,HIV‐associatedstigma,andfrequency ofinternetaccess.Datawere analyzedwith descriptive andmultivariate statisticalmethods.RESULTS:The majority(84%)of individuals werewilling tosharetheirPHIwithclinicians involved intheircare. Fewer

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individuals (39%)wereaswilling tosharewithnon‐clinicalstaff.Willingnesstoshare PHIwaspositivelyassociatedwithtrustandrespectofclinicians.CONCLUSION:PLWH acceptedclinicians'needforaccesstoaccurateinformation.Patients' trustin their primarycare providers highlightstheimportanceoftheclinician‐patientrelationship whichcanbeusedtoengagepatientssupportforhealthinformation exchange initiatives. PRACTICEIMPLICATIONS:AselectronicstorageandsharingofPHIis increasing, cliniciansandPLWHshoulddiscusspatients' attitudestowardssharingPHI electronically.

vanEmpel,I.W.,Hermens,R.P.,Akkermans, R.P.,Hollander, K.W.,Nelen,W.L.,&Kremer, J.A.(2011).Organizationaldeterminantsof patient‐centeredfertilitycare:Amultilevel analysis. Fertility and Sterility, 95(2),513‐519.doi:10.1016/j.fertnstert.2010.08.021 OBJECTIVE: Toidentify organizationaldeterminants ofpositive patientexperiences withfertility care,with thegoalof improving patientcenterednessofcare.DESIGN: Cross‐sectionalsurvey.SETTING: Onelargeuniversityclinicand12medium‐sized fertilityclinicsintheNetherlands. PATIENT(S):Threehundred andsixty‐ninecouples receivingmedicallyassisted reproductioninoneoftheparticipating clinicsbetween Marchand May2008. INTERVENTION(S):None.MAINOUTCOMEMEASURE(S): Organizationaldeterminantsofpatients'experienceswith patientcenteredness in fertilitycare.RESULT(S):Ofthepatientsduringtherelevant period, 78%ofthe women and76%of theirpartnersparticipated inthe study.Infertile coupleswhohavea lead physician,haveaccess toanelectronicpersonalhealthrecord, orseetrainedfertility nurseshavemorepositive experienceswithaspectsofpatient‐centeredcare,like continuity ofcareand partnerinvolvement. Moreover, receiving atreatmentother

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thanin vitrofertilizationwasnegativelyassociated with the perceivedpatient centerednessofcare. Theidentifieddeterminants explained5.1% to 22.4%ofthetotal variance. CONCLUSION(S):Thisstudyprovidesorganizationaldeterminantsof patients'experiences withfertility careon numerousfacetsof patientcenteredness. Theseorganizationaldeterminantscanbeusedasvaluabletools toenableclinics to provideamorepositive patientexperience.

Wagner, P.J.,Howard,S.M.,Bentley,D.R.,Seol,Y.H.,&Sodomka,P.(2010).Incorporating patientperspectivesintothepersonalhealthrecord:implicationsfor careandcaring. Perspectives in Health Information Management, 7,1e. Electronicpersonalhealthrecords(ePHRs)canpotentiallymaximize accessand coordinationofhealthinformationandimprovepatient/cliniciancollaboration, patientself‐management,andhealthoutcomes.MostePHRsaredesignedbyvendors, physicians, andotherproprietary partnersand haveneglectedthepatientperspective. Thisstudysoughttoincorporate patientfeedbackintoanexisting ePHR system. Patientsparticipated inasemistructuredinterviewafteronetotwoweeksofusingan ePHR.Interviews addressedstrengthsandweaknessesof thePHR. Twoiterationsof interviews, referredto asWave 1andWave2,occurredsequentially. Aniterative processofthemeidentificationwasused,and threethemecategories(User,System Acceptance,andTechnology)were identified inthetwowaves.Seven technology themeswith40specificquestions were identified andwererank orderedby importanceandfeasibility,and 20 suggestions weresubsequentlyimplemented into theePHR.Thus,incorporatingpatient feedbackonspecificutilitiesandfunctionality intoanexisting ePHRispossible.

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Weitzman, E.R.,Kaci,L.,&Mandl, K.D.(2009).Acceptability ofapersonallycontrolled healthrecordinacommunity‐basedsetting:Implications forpolicyanddesign. Journal of Medical Internet Research, 11(2),e14.doi:10.2196/jmir.1187 BACKGROUND:Consumer‐centeredhealthinformation systemsthataddressproblems relatedtofragmentedhealthrecordsanddisengagedanddisempoweredpatientsare needed,as areinformationsystems thatsupportpublichealthmonitoringand research.Personallycontrolled healthrecords(PCHRs)representoneresponseto theseneeds.PCHRsareaspecial classofpersonalhealthrecords(PHRs)distinguished bytheextenttowhichuserscontrolrecordaccessandcontents.Recentlylaunched PCHRplatformsincludeGoogleHealth,Microsoft'sHealthVault, andtheDossia platform,basedonIndivo.OBJECTIVE:Tounderstandthe acceptability,early impacts, policy,and designrequirements of PCHRsin a community‐basedsetting.METHODS: Observationaland narrativedata relatingto acceptability,adoption,anduseofa personallycontrolledhealthrecordwerecollectedandanalyzed withinaformative evaluation ofaPCHRdemonstration.Subjectswere affiliatesof amanagedcare organization runbyanurbanuniversityinthenortheasternUnitedStates.Data were collectedusingfocusgroups,semi‐structuredindividualinterviews, andcontent reviewof emailcommunications. Subjectsincluded:n=20administrators,clinicians, andinstitutionalstakeholderswhoparticipatedinpre‐deployment grouporindividual interviews; n =52communitymemberswhoparticipatedinusabilitytesting and/or pre‐deploymentpiloting;andn= 250subjectswhoparticipated inthefull demonstrationofwhich n=81initiatedemail communicationsto troubleshoot problemsorprovide feedback.Alldatawere formatted as narrative text andcoded

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thematically bytwoindependent analystsusingasharedrubric ofaprioridefined majorcodes.Sub‐themeswereidentifiedbyanalystsusinganiterativeinductive process.Themeswere reviewed within andacrossresearchactivities (ie,focusgroup, usabilitytesting, email content review)and triangulated toidentifypatterns.RESULTS: LowlevelsoffamiliaritywithPCHRswere foundaswere highexpectationsfor capabilities ofnascentsystems.Perceived valueforPCHRswas highestaroundabilities toco‐locate,view,update,and sharehealthinformationwithproviders.Expectations werelowestforopportunitiesto participateinresearch.Early adoptersperceivedthat PCHRbenefitsoutweighedperceivedrisks, includingthoserelatedto inadvertent or intentional information disclosure.Barriersandfacilitatorsatinstitutional, interpersonal,andindividuallevels were identified.Endorsementof adynamic platformmodelPCHRwasevidencedbypreferencesfor embedded searching,linking, andmessagingcapabilities inPCHRs;byhighexpectationsforwithin‐systemtailored communications; andby expectationoflinkagesbetween self‐report andclinicaldata. CONCLUSIONS:Lowlevelsofawareness/preparednessandhighexpectationsfor PCHRsexist asapotentiallyproblematicpairing.Educationalandtechnicalassistance forlayusersandprovidersarecriticaltomeetchallenges relatedto:accesstoPCHRs, especiallyamongoldercohorts;workflowdemandsandresistance tochangeamong providers; inadequate healthandtechnologyliteracy;clarificationof boundaries and responsibilityfor ensuringaccuracy andintegrityofhealthinformationacross distributed datasystems;andunderstandingconfidentialityand privacyrisks. Continued demonstrationand evaluationofPCHRsisessentialto advancingtheiruse.

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Weitzman, E.R.,Kaci,L.,&Mandl, K.D.(2010).Sharing medicaldataforhealth research: Theearlypersonalhealthrecordexperience. Journal of Medical Internet Research, 12(2),e14. doi:10.2196/jmir.1356 BACKGROUND:Engagingconsumersinsharinginformationfrompersonallycontrolled healthrecords(PCHRs)forhealthresearchmaypromotegoalsof improvingcareand advancing publichealthconsistent withthe federalHealth InformationTechnologyfor EconomicandClinicalHealth(HITECH)Act.Understandingconsumerwillingness to sharedata iscriticalto advancingthismodel.OBJECTIVE: The objectivewasto characterize consumerwillingness tosharePCHRdatafor health researchandthe conditions andcontextsbearingonwillingnesstoshare. METHODS:Amixedmethod approachintegratingsurveyand narrativedatawasused.Survey data werecollected aboutattitudestoward sharing PCHRinformationforhealthresearchfromearly adopters(n=151)ofa livePCHR populatedwithmedicalrecordsand self‐reported behavioral andsocialdata.Data wereanalyzedusingdescriptivestatisticsandlogistic regressiontocharacterizewillingness,conditionsforsharing, andvariationsby sociodemographicfactors.Narrativedatawerecollectedthrough semistructured focus groupandone‐on‐oneinterviews withaseparatesampleofcommunitymembers(n= 30)followingexposuretoPCHRdemonstrations.Twoindependent analystscoded narrativedatafor majorandminorthemesusingasharedrubric ofaprioridefined codesandaniterativeinductive process.Findingsweretriangulated withsurvey resultstoidentifypatterns.RESULTS:OfPHCRusers,138outof151(91%)were willingtosharemedicalinformationforhealth research with89(59%)favoringan opt‐insharingmodel.Willingness tosharewasconditionedbyanonymity,research

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use,engagementwithatrustedintermediary, transparencyaroundPCHRaccessand use,andpayment.Consumer‐determinedrestrictionson contentand timingof sharing maybeprerequisitestosharing. Selectdifferencesin support forsharingunder differentconditionswereobservedacrosssocialgroups.Nogenderdifferenceswere observed;howeverdifferencesinage,role,and self‐rated healthwerefound.For example,studentswere morelikely thannonstudentsto favoran opt‐outsharing default(unadjustedoddsratio[OR]=2.89,95%confidenceinterval[CI]1.10‐7.62,P =.03).Participantsoverage50 werelesslikelythanyounger participantsto report thatpaymentwouldincreasewillingness toshare(unadjustedOR = 0.94,95% CI0.91‐ 0.96,P<.001).Studentsweremorelikelythannonstudentsto report that payment wouldincreasetheirwillingness toshare(unadjustedOR9.62, 95% CI3.44‐26.87,P< .001).Experiencing a publichealthemergency mayincreasewillingnesstoshare especiallyamongpersonsover50 (unadjusted OR1.03,95%CI1.01‐ 1.05,P=.02); however,studentswerelesslikely thannon‐studentstoreport thisattitude (unadjustedOR0.13,95%CI0.05 ‐0.36,P<.001).Finally,subjectswithfairor poor self‐ratedhealthwerelesslikelythanthosewithgoodtoexcellentself‐ratedhealthto reportthat willingness tosharewouldincreaseduring a public healthemergency (unadjustedOR0.61,95%CI0.38 ‐0.97,P=.04).CONCLUSIONS: Strongsupportfor sharingof PCHRinformation for healthresearchexistedamongearly adoptersand focusgroupparticipants,withsupportvaryingbysocialgroup underdifferent conditions andcontexts.Allowing userstoselecttheirpreferredconditionsforsharing maybevital tosupportingsharing andfosteringtrustas maybedevelopmentofsafety monitoring mechanisms.

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http:unadjustedOR0.61,95%CI0.38

 

          

Barriers – Annotated Bibliography

Anoshiravani,A.,Gaskin,G.,Kopetsky,E.,Sandborg,C.,& Longhurst,C.A.(2011). ImplementinganInteroperablePersonalHealthRecordinPediatrics: LessonsLearned atan AcademicChildren'sHospital. Journal of Participatory Medicine, 3,e30. Thispaper describesthedevelopmentofaninnovativehealthinformationtechnology creating a bidirectional linkbetweenthe electronicmedicalrecord(EMR)ofan academicchildren'shospitaland a commerciallyavailable, interoperablepersonal healthrecord(PHR).Thegoalof thePHRprojecthasbeentoempowerpediatric patientsand their familiestoplayamoreactiveroleinunderstanding,accessing, maintaining,andsharingtheirpersonalhealthinformationtoultimatelyimprove healthoutcomes.Themostnotablechallengesprovedmoreoperationalandcultural thantechnological.Ourexperience demonstratesthataninteroperablePHRis technicallyandculturallyachievableatapediatricacademicmedicalcenter. Recognizingthecomplexsocial, cultural,andorganizationalcontexts ofthesesystems isimportantforovercomingbarrierstoasuccessfulimplementation.

Benhamou,P.Y.(2011).Improving diabetesmanagement withelectronichealth records andpatients'healthrecords. Diabetes & Metabolism, 37(Suppl4),S53‐6. doi:10.1016/S1262‐3636(11)70966‐1 Thelackof patientengagement andclinicalinertiabothcontributetosuboptimal diabetescare.However,bothobstaclesare amenableto informatics‐andInternet‐

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basedinterventions. Theuseofelectronicmedicalrecords (EMRs)isnowestablished asbeingusefulforimprovingdiabetescare.Intelligentrecordsthatintegrate computerizeddecision‐supportsystemsare nowabletorecommend careprotocols tailored torisklevels. Web‐basedpersonalhealthrecord (PHR) systems,shared