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DevelopmentofaCommunity-BasedClinicalRegistryforPa:ents
withCochlearImplants
JedGrisel,MDTerryGriffin,PhDOctober15,2015
Disclosures• 501(c)3• Supporters
– Cochlear– AdvancedBionics– WichitaFallsAreaCommunityFounda:on– UnitedRegionalHealthCareSystem– MidwesternStateUniversity– Echometer– J.SBridwellFounda:on– BryantEdwardsFounda:on– Jim&VickyMcCoy– BoardMembers
Background• WhyisbeXerdataneededintheCochlearImplantCommunity?– Reachnewmarkets– Affectpublicpolicy– Nego:atewithpayers– Improvecareforpa:ents
HowisDataManaged?• ElectronicHealthRecords– Advantages
• Clinicaldocumenta:on,billing
– Disadvantages• Siloed• Non-standardized• Myopicviewofpa:ent’sjourney
HowisDataManaged?• Pa:entRegistry– Apa:entregistryisanorganizedsystemthatusesobserva:onalstudymethodstocollectuniformdata(clinicalandother)toevaluatespecifiedoutcomesforapopula:ondefinedbyapar:culardisease,condi:on,orexposure,andthatservesapredeterminedscien:fic,clinical,orpolicypurpose(s).
(AHRQ.gov)
Datamanagementtechnologyinavalue-drivenworld
• HIPAA-secure• Cloud-based• Builtaroundcollabora:on• Pa:entcentered–datafollowspa:ents• Uniquelyiden:fiespa:ent/provider/organiza:on• Encouragesevidence-basedcare
Methods• Cochlearimplantdatamanagementplaeorm
DataElements• Supportedbyliterature
– Elementsevaluatedbasedon• Feasibility• Keepingdatasetconcise• Valuetobodyofknowledge
Methods• Logis:cs– Dataentrymustnotcreatedoublework– Integratedintoworkflowtominimizedisrup:onsandideallysavestheclinician:me
• DataAccess– Accesstodatagrantedtoprovidersinvolvedinpa:ent’scare(CareTeam)
Methods• TechnicalRequirements:Implementa:on
– RESTfulAPI– Tokenizedaccess(sessionmanagement)– Widgetbasedsystem– UI/UXdesignbasedonworkflowandforthroughput– DesignedforDataaggrega:on– InputValida:on– NISTLevelIISecurity– Audi:ngandLogging
Methods• TechnicalRequirements:Security– EncryptedDiskStorageandDatabase– TwoFactorAuthen:ca:on– VPN(SecureSocketAccess)– Firewalled– IntrusionDetec:on– Penetra:onTes:ng– Raid(RedundantStorage)
Results• CareTeams– MaintainHIPAAsecuritybygran:ngaccessonlytothoseinvolvedinpa:ent’scare
– Use“Invita:on”and“Accept/Reject”procedure
CareTeams
Results• DataInput– CarePhases(MilestoneVisits)
• KeyInforma:onorganizedaccordingtopa:ent’sprogressalongtheirimplantjourney
- Toviewalldataelements,pleasevisit- aii-hermes.org/dataElements.php
Input:CarePhases
Results• DataInput– Toolbar(Non-MilestoneVisits)
• Demographics• Syndromes/E:ologies• Surgeries• Medica:ons• HearingAidInforma:on• AudiometricTes:ng(Non-Milestone)• SpeechandLanguageDevelopmentInforma:on
Input:Toolbar
Results• DataOutput– Pa:entReports
Output:Pa:entReports
Results• DataOutput– DataQueryTool
Output:DataQueryTool
ResultsSta%s%cs
Par:cipa:ngFacili:es 11(7ac:ve,4pending)(5academic,6private)
Pa:entsrecorded 79
TotalannualCIcaseload
~520
StatesRepresented 4(Texas,California,Arizona,Ohio)
ServicesRepresented Surgery,Audiology,Speech,Educa:on
Conclusion• Aswere-imaginehowdataismanaged,wecan– Improvecollabora:onamongproviders– Armourcausewithrobustdatasetsthataffectpolicy
– Improvecareforourpa:ents
Acknowledgements• AnneLam– AiiExecu:veDirector&DatabaseManager
• UniversityofSouthernCaliforniaCarusoFamilyCenterforChildhoodCommunica:on