Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 Page 9 Page 10 Page 11 Page 12DATA POINTS: A Health Department Roadmap for Enhancing Data to Care Programs 5 needtoworkwithlegalcounseltodevelopdatasharing agreements(DSAs)iftheyplantosharedataoutside ofthehealthdepartment.Somehealthdepartments requireDSAswhensharingidentifiabledataacross organizationalunitswithinthehealthdepartment.Allof thisworkwillbefacilitatediftheyhavetheunequivocal backingofhealthdepartmentleadership. Atrustedworkingrelationship withHIVCareproviders Providersaresignificanthealthdepartmentpartnersand thereforehealthdepartmentsandprovidersmustwork inpartnershipasjurisdictionsembarkonimplement- ingD2C.Theinformationtheyhavecomplementsthe jurisdiction-wideinformationthatthehealthdepartment collects.Byworkingcloselywithprovidersthehealth departmentcanlearnwhyapersonmightnotbeincare andwhetherandhowtoapproachthem. Equallyimportant,inordertosuccessfullylinksomeone backintocareandbuildandmaintainatrustingrela- tionshipbetweenthepatientandboththeproviderand thehealthdepartment,theymustbecooperatingand supportingeachother’sactions. Strategizeabouthowtoworkwithproviders.Somehealth departmentsstartwiththosewhoreceiveRyanWhitepro- gramfunding.Considerstartingbymeetingone-on-one withthosewhohavelargeHIV-focusedpracticesandwith whomthehealthdepartmentalreadyhasasolidworking relationship.Theycansharetheproviderperspectiveon usingsurveillancedatatoidentifyandlinkpeopleinto careandalertthehealthdepartmenttoconcernsand areastofocusonthatmaynothavebeenconsidered. However,donotoverlookprivateprovidersandbesure tomeetwithsomeofthemtohearandaddresstheir concerns. The supportandcooperationof the communityof PLWHandaffected byHIV UsingHIVsurveillancetoidentifyindividualswhoarenot incareisarelativelyrecentuseofsurveillancedatawhich has,historically,beenusedtodescribethepopulationof PLWHforpreventionandcareplanningpurposes.Using ittoidentifyindividualstoassistthemwithaccessing medicalcareraisesprivacyconcernsanditis,therefore, helpfultohaveadiscussionwiththecommunityofPLWH andaffectedbyHIVinordertosuccessfullyapproachin- dividualstoassistthemwithlinkagetocare.Thepurpose istolearnabouttheconcernsofthecommunitysothe healthdepartmentisbetterinformedandcantailorthe approachinawaythatismorelikelytosucceed.Italso helpsbylettingthosewhoareapproachedknowthatthe healthdepartmenthashadthesediscussionstoincrease healthdepartmentcredibility. Thisissuewaslargeenoughthatinthefallof2012 ProjectInformheldaThinkTankonusingsurveillance andotherdatatoimproveHIVcarelinkageandretention toexploreusingsurveillancedatainthiswayandgain thesupportofthecommunity.Itisrecommendedthat healthdepartmentsreadthisreportbeforebeginninga D2Cprogram. D2CinvolvescontactingPLWHwhoarestigmatizedbe- causeoftheirHIVstatus.Suchstigmacanleadtofamily andsocialexclusion,violenceandinternalizedstigma. Additionally,HIVcriminalizationcanpreventpeoplefrom testingforHIVandkeeppeoplefromgettingintoand stayinginHIVmedicalcare.Sincetheseactivitiesarevital toD2Citisimportanttounderstandhowthisplaysoutin theircommunity. Thecommunityandpublichealthoftenspeakdifferent languagesand,therefore,listeningtoeachotherisvital beforeembarkingoncontactingPLWH.Forexample, publichealthmightrefertoapersonlivingwithHIVas “acase”.Whilethisisacommonterminepidemiology, beingreferredtointhiswaycanbealienatingforthe community.Publichealthcanrefertotheprocessoflow- eringsomeone’sviralloadbelowthelevelofdetection as“suppressingpeople,”anotherphrasethatPLWHmay findoffensive.Buildingpartnershipsbetweenthemed- ical/publichealthandtheHIVcommunitiescanbehard andtakesworkbutisessentialtobuildingsuccessful surveillance,prevention,care,andD2Cprograms. HowdoIstart? ThereareseveralstepstoestablishinganeffectiveD2C programwhicharedescribedintheCDCD2Ctoolkit. Healthdepartmentsshouldconsiderallthreemodels intheD2Ctoolkitandbeopentochangesastheylearn moreabouttheirdataandwhatdoesanddoesn’tworkin theirjurisdiction.However,beforestartingtouseahealth department’sHIVsurveillancesystemforD2Cthereare requiredstepsassociatedwiththesurveillanceprogram. Usingthetechnicalassistancetoolsavailableinthe CDC’sD2Ctoolkitwillgiveexamplesofhowotherhealth departmentshaveproceededaswellastemplatesand otherresources.Thiswebsitehasdocumentstoassistwith creatingadatabasetotrackinvestigatingthenotincare (NIC)list,prioritizingthelistforfollow-up,sketchingyour D2Cprogram,includingprovidingdatagainedduring investigationofthelisttothesurveillancedatabaseso thatdataqualityanddefinitionsofnotincareiscontin- uallyimproved.Healthdepartmentsshouldstartwith definitionsthatmakesensefortheirjurisdictionandthe datathattheyhaveandbewillingtomodifythosedefi- nitionsastheyworkwiththem.Inordertotrackprogress, theywillneeddefinitionsof:notincare,linkagetocare, retentionincare,etc. PrioritizingfollowupontheNIClistcanhelporganizethe listforimprovedoutcomesamongtheneediestand/or thosemostlikelytobelocated.Forexample,prioritizing: 1. Thosewhoarenotincareandhadaviralloadresult butitwashighindicatinghigherriskofillnessand transmission 2. Thosediagnosedwithinthelasttwoyearswhomay bemorelikelytoresultinsuccessfullylocatingand contacting TheD2CToolkithastoolstoassistwithprioritization: 1. PrioritizingtheD2CNotinCareList 2. SummaryofNotinCare(NIC)DefinitionsUsed byOtherHealthDepartmentsincludeshowsome healthdepartmentsprioritizedclientsforfollow-up 3. Prioritizationofnotincarelists 4. D2C:UsingHIVSurveillanceDatatoSupportthe HIVCareContinuum Insummary,healthdepartmentsshouldstartwiththe datathattheyhavebutneednotproduceaNIClistuntil theunderlyingrequirementsareinplace.Otherwise,they arelikelytowastetimefollowingupwithpeoplewhoare nolongeralive,nolongerliveintheirjurisdiction,and/ orareactuallyincare.Thehealthdepartment’sgoalis toproducean“actionable”list:alivingdocumentthat theycansuccessfullyacton—onethat,ideally,changes regularly(weeklyormonthly)basedonnewinformation (changeofaddressorothercontactinformation,recent labtests,changeofproviderornoticeofdeath)soitisas uptodateaspossible. InitiatingfieldworkwithPLWHwhoappeartobenotin carewithoutdoingthebackgroundworkrisksalienating providers,alienatingthepeoplehealthdepartments arecontacting,wastingstafftime,discouragingstaff, andunderminingtrustintheD2Cstrategy.Findingand linkingpersonsbackintocare(orintocareforthefirst time)ishardwork.Staffneedtobesupportedanden- couraged.Sendingfieldstaffouttofindpeoplewithout doingalltherequiredbackgroundworktomaximizethe likelihoodthatindividualsarereallybothnotincareand livinginthejurisdictionwillmakestaffvulnerablefor discouragementandfailure.