Download pdf - TABLE OF CONTENTS - health.state.mn.us OF CONTENTS Access to PHRs ... communication and administrative functions, such as secure messaging ... neighbors suggests that the dyadic

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 Childrens 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 childrens hospital.

Exchange/Interoperability.............................. Page 203 Implementing an interoperable personal health record in pediatrics: Lessons learned at an academic childrens 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 ePortal

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 Foundations Aligning Forces for Quality initiative

Authors:

BonnieL. Westra, PhD,RN,FAAN,FACMI,Associate Professor,UniversityofMinnesota,SchoolofNursing&Institute for HealthInformatics,CoDirectorCenterforNursingInformatics LynnChoromanski,PhD,RNBC,NursingInformaticsSpecialist,GilletteChildrens 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, BioMedicalLibrary,Universityof Minnesota Tari Rajchel,DNPStudent,RN,NursingInformaticianNorthMemorialHospital

Compiled 4/12 2012 1

Access to PHRs: Annotated Bibliography

Benhamou,P.Y.(2011).Improving diabetesmanagement withelectronichealth records andpatients'healthrecords. Diabetes & Metabolism, 37(Suppl4),S536. doi:10.1016/S12623636(11)709661 Thelackof patientengagement andclinicalinertiabothcontributetosuboptimal diabetescare.However,bothobstaclesare amenableto informaticsandInternetbasedinterventions. Theuseofelectronicmedicalrecords (EMRs)isnowestablished asbeingusefulforimprovingdiabetescare.Intelligentrecordsthatintegrate computerizeddecisionsupportsystemsare nowabletorecommend careprotocols tailored torisklevels. Webbasedpersonalhealthrecord (PHR) systems,sharedwith healthcare providers,couldalso provideaddedvaluebypromoting selfmanagement ofthebehavioursrelatedtodiabetes.TheseWebbasedprogrammesincludepatients' accesstoEMRs,uploadingofglucosemonitoring results, aglucosediary,secureemail withproviders,manual orautomatedfeedbackonbloodglucosereadingsandother riskfactors, aneducationalwebsite,andanonlinediary forenteringpersonal information onexercise,diet and medication. TheintegrationofWebbasedpatients' systemsintotheEMRusedbyphysiciansis thenext frontier.In addition,theinput from"smartphones"thatareable toproviderealtimesupporttopatientscould contributetothereorganization ofdiabetescare.Convincingdataon HbA(1c) improvementswithsuchsystemsareavailable for type2 diabetes,butarestill equivocalfortype1diabetes.Obstaclesincludepatients'compliancewiththe


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, 6569. Personallycontrolledhealthrecords(PCHRs)andpatientportalsareincreasingly beingofferedbyhealthcareinstitutions,employers,insurance companies and commercialentitiesto allowpatientsaccess to theirhealthinformation.Both applications offeruniqueservices toprovide patientswithtoolstomanagetheir health.WhilePCHRsallowusers ubiquitous,portable,patientcontrolledaccesstotheir healthinformation,traditionalpatientportals provideprovidertethered applications allowingpatientsaccess,butnotcontrolof,certainhealthcareinformation, aswellas communicationandadministrative functions, suchassecuremessaging,appointment managementandprescription refillrequests,facilitating care ataspecifichealthcare facility.We describeourapproach forthedesign,contentcreation,policydevelopment, andimplementation of MyChildren's,auniquewebbasedapplication leveraging the advantages ofbothaprovidertetheredpatient portaland aPCHRto allowpatients andtheirguardians accesstothe functionalityandconvenience ofa traditionalpatient portal,aswellastheportabilityandflexibilityofaPCHR.


Britto,M.T., &Wimberg,J.(2009).Pediatricpersonalhealth records:current trendsand keychallenges. Pediatrics, 123 Suppl 2,S979.doi:10.1542/peds.20081755I 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 apatientaccessibleelectronichealthrecord. Cardiology in the Young, 20(5),477484. doi:10.1017/S1047951110000363 OBJECTIVE:Thepurposeofthisstudywastoevaluatetheutilisationof awebbased multimedia patientaccessibleelectronichealthrecord,forpatientswithcongenital cardiacdisease.PATIENTSANDMETHODS:Thiswasaprospective analysisofpatients undergoing congenital cardiacsurgeryat asingleinstitutionfrom1September, 2006 to1February,2009.Aftermeetingswithhospitaladministration,physicians,nurses, andpatients,weconfiguredasubsetofthecardiacprogram'swebbasedclinical 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:AwebbasedPatient AccessibleElectronicHealthRecordwasdesigned forpatients withcongenitalcardiac disease.Theadoption rate washigh,and utilisationpatternssuggestthat the ElectronicHealthRecord couldbecomeauseful toolforhealthinformationexchange.

Chinn,M.D.,&Fairlie, R.W. (2004).Thedeterminantsofthe globaldigitaldivide: Acrosscountryanalysisofcomputerand internetpenetration. Yale University Economic Growth Center Discussion Papers, (881)Retrievedfrom http://www.econ.yale.edu/growth_pdf/cdp881.pdf Toidentify thedeterminants of crosscountrydisparitiesinpersonalcomputerand Internetpenetration, weexamineapanelof 161countriesover the 19992001 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.Theglobaldigitaldivideismainlybutbynomeansentirely


http://www.econ.yale.edu/growth_pdf/cdp881.pdf

accounted forbyincomedifferentials.Forcomputers,telephonedensity and regulatory qualityare ofsecond andthirdimportance,whileforthe Internet,this orderingis reversed. Theregionspecific 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),3946.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,unidirectionalcaregivercare recipientrelationship assumedbycaregiver researchsofarandbyresourcesdeployed toassistcaregivers maybeinsufficienttoascertain andmeettheneedsof the care community.METHODS: Inthisarticle,wedescribetheextensionof a Webbasedpersonalhealthrecord system,iHealthSpace,forexplicitly andopenly incorporatingcaregiversinto thecare community. RESULTS:Using thisportal,aset ofbusiness rules wasimplementedto supportthecreationofcustodialaccounts.Thesebusiness ruleswillbeusedtocreate modulesthatsupportdiabetescareinanadultpopulation.CONCLUSIONS:We


http://www.ncbi.nlm.nih.gov.ezp2.lib.umn.edu/pmc/articles/PMC3045238

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),5S15S. doi:10.1177/1062860606287642 TheauthorsprovidebackgroundinformationdistinguishingaPHR,fromEHR,and EMR.Theydescribeconsumerand provider issuesthatmayprevent usingaPHR. The authorsthengoontoproposingasolutionLifeSensor,whichisaWebbasedPHRthat 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),i27. doi:10.1136/amiajnl2011000400 OBJECTIVE:Healthcaredeliveryorganizations areincreasinglyusingonlinepersonal healthrecords(PHRs)toprovide patientswithdirectaccessto theirclinical information; however, theremaybealackofconsistencyinthe data madeavailable. WeaimedtounderstandthegeneraluseandfunctionalityofPHRsandthe organizationalpolicies anddecisionmakingstructuresfor makingdataavailableto


patients.MATERIALS ANDMETHODS:Acrosssectional 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 structureforthedecisionmaking 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/DcomUnitedStates/Local%20Assets/Documents/us_chs_ConsumerSurveyExecutiveSummar y_200208.pdf


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

ThisresearchstudybytheDeloitte Center for HealthSolutions,partof DeloitteLLP, providesan important andtimely perspectiveonhealthcareconsumerism.It features acomprehensiveassessmentofconsumersbehaviors, 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),149154. 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 thatsupportsevidencebasedanalysisanddesignconsiderations affectingclinicalefficacy,administrative efficiency,andvaluegenerationforallPHR stakeholders.

Do,N.V.,Barnhill,R.,HeermannDo,K.A.,Salzman,K.L.,& Gimbel,R.W.(2011).The militaryhealthsystem'spersonalhealthrecordpilotwithMicrosoft HealthVaultand GoogleHealth. Journal of the American Medical Informatics Association, 18(2),118124. 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:Apilotprojectwasconductedin20082009 atMadigan ArmyMedical Center in Tacoma,Washington.OurPHRwas architected toaflexibleplatformthat incorporatedstandardsbasedmodelsofContinuityofDocumentand Continuity of CareRecordtomapDepartmentof Defensesourcedhealthdata,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 todatatransferdecisions(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.healthcareinformatics.com/article/itregisteringpatientportalspartiiseefinancialdepartmentparti Whilethetrendhasbeenslowedbytheeconomy,portaladoption isgrowing. CIOsare deployingportalsthat enablepatientstoaccess labresults,requestor cancel appointmentsand get discharge information.Someportalsenable patientsto communicatedirectly withphysicians andviewtheirrecords.Whilesomeportals integratewithEMRs(includinglabandpharmacy),otherssiton top.ManypatientsandCIOsstillhaveconcerns regardingprivacyandsecurity.Someexpertsbelieve portalswillintegrate furtherwithhospitalinformationsystemsinthefuture,andwill includefunctionslike eprescribing.

Grossman,J.M.,ZayasCaban, T.,&Kemper,N.(2009).Informationgap:Can healthinsurer personalhealthrecordsmeetpatients'andphysicians'needs? Health Affairs (Project Hope), 28(2),377389. doi:10.1377/hlthaff.28.2.377 Personalhealthrecords(PHRs),centralizedplacesforpeopletoelectronicallystore andorganize theirhealthinformation,canbenefitbothpatientsanddoctors.This qualitative studyofhealthinsurers'PHRsforenrollees revealspotentialbenefitsand challenges. Insurers'abilitytoputclaimsbaseddata into the PHRoffersanadvantage. However,consumersareconcerned aboutsharingpersonalhealth informationwith insurers and aboutInternetsecurity.Physiciansquestion (1)thevalidityofclaimsdata inmakingtreatmentdecisionsand(2)whetheraccessingthesePHRsisworththe disruptionstotheirworkflow.Thispaperofferspossiblesolutionsthatmayleadto morewidespreadadoptionof insurerPHRs.

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http://www.healthcare-informatics.com/article/it

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),i137.doi:10.1136/amiajnl2010000082 Inorder to create usercentereddesigninformation toguidethedevelopmentof personalhealthrecords(PHRs),24patientsparticipated inusability assessmentsof VA'sMyHealtheVetprogram.Observationalvideosand efficiency measureswere collectedamongusersperforming fourPHRscenarios:registration andlogin, prescription refill,trackinghealth,andsearchingforhealth information.Twentyfive 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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http://xnet.kp.org/newscenter/pressreleases/co/2007/062607emailteens.html

industry is slowtomeetthisdemandaccordingtothelatestHarrisInteractivepoll. Now,KaiserPermanenteColorado (KPCO)hasextendeditspatientphysician email systemand onlinemedicalrecord toapopulationreadytobewired todotheir"health homework"onlineteens.

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/iwssispmu201101.pdf Weproposeasystemwhichenablesaccesstotheuser'sPersonal HealthRecord(PHR) inthe event ofemergency.The accesstypicallyoccursinanadhocandspontaneous mannerandtheuserisusuallyunconscious,hencerenderingthe unavailabilityofthe user'spasswordtoaccessthePHR. Theproposedsystemincludes asmartcardcarried bytheuseratalltimeanditis personalizedwithapseudosecret, an URLtothePHR Server, asecretkeysharedwith thePHRServerandanumberof redemptiontokens generatedusingahash chain.In eachemergencysession, aonetime useredemption tokenisissuedbythesmartcard,allowingtheemergencydoctortoretrievetheuser's PHRuponsuccessfulauthenticationofhiscredentialsandvalidationoftheredemption token. The serverreturnsthe PHRencrypted withaonetimesession keywhich can onlybedecryptedbytheemergencydoctor.Thedevisedinteractionprotocolto facilitateemergencyaccesstothe user'sPHRissecureandefficient.

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Reti,S.R.,Feldman,H.J.,Ross,S.E.,&Safran,C. (2010). Improvingpersonalhealthrecords forpatientcenteredcare. Journal of the American Medical Informatics Association, 17(2),192195.doi:10.1136/jamia.2009.000927 OBJECTIVE:Toassess thepatientcenteredness ofpersonalhealthrecords(PHR)and offer recommendations forbestpracticeguidelines.DESIGN:Semistructured interviews wereconductedinsevenlarge earlyPHRadopterorganizations in2007. Organizationswerepurposivelyselectedtorepresentavariety of US settings, includingmediumandlargehospitals,ambulatorycarefacilities,insurersandhealth plans,governmentdepartments,andcommercialsectors.MEASUREMENTS:Patientcenterednesswasassessedagainstaframeworkofcarethatincludes:(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 enablemanypatientcentered functionssuchasdataaccessforproxies andminors. Noorganization allows patientviewsofclinicalprogress notes,andturnaround times for PHRreportingof normallaboratoryresultscanbe upto7days.CONCLUSION:Findingssuggest patientcenterednessforpersonalhealth 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 selfreported behavioral andsocialdata.Data wereanalyzedusingdescriptivestatisticsandlogistic regressiontocharacterizewillingness,conditionsforsharing, andvariationsby sociodemographicfactors.Narrativedatawerecollectedthrough semistructured focus groupandoneononeinterviews withaseparatesampleofcommunitymembers(n= 30)followingexposuretoPCHRdemonstrations.Twoindependent analystscoded narrativedatafor majorandminorthemesusingasharedrubric ofaprioridefined codesandaniterativeinductive process.Findingsweretriangulated withsurvey resultstoidentifypatterns.RESULTS:OfPHCRusers,138outof151(91%)were willingtosharemedicalinformationforhealth research with89(59%)favoringan optinsharingmodel.Willingness tosharewasconditionedbyanonymity,research use,engagementwithatrustedintermediary, transparencyaroundPCHRaccessand use,andpayment.Consumerdeterminedrestrictionson contentand timingof sharing

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maybeprerequisitestosharing. Selectdifferencesin support forsharingunder differentconditionswereobservedacrosssocialgroups.Nogenderdifferenceswere observed;howeverdifferencesinage,role,and selfrated healthwerefound.For example,studentswere morelikely thannonstudentsto favoran optoutsharing default(unadjustedoddsratio[OR]=2.89,95%confidenceinterval[CI]1.107.62,P =.03).Participantsoverage50 werelesslikelythanyounger participantsto report thatpaymentwouldincreasewillingness toshare(unadjustedOR = 0.94,95% CI0.91 0.96,P