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H.293
IntroducedbyRepresentativeMaguireofRutlandCity
ReferredtoCommitteeon
Date:
Subject:Health;healthequityreporting;cancerregistry;amyotrophiclateral
sclerosisregistry;disclosureofidentifyinginformation
Statementofpurposeofbillasintroduced:Thisbillproposestoreducefrom
annuallytoeverythreeyearsthesubmissionofareportbytheDepartmentof
Healthanalyzinghealthequitydata.Itfurtherproposestoamendthe
disclosureprovisionspertainingtothecancerandamyotrophiclateralsclerosis
registries.
Anactrelatingtohealthequitydatareportingandregistrydisclosure
requirements
ItisherebyenactedbytheGeneralAssemblyoftheStateofVermont:
***HealthEquityDataReporting***
Sec.1.18V.S.A.§ 253isamendedtoread:
§253.DATARESPONSIVETOHEALTHEQUITYINQUIRIES
***
(b)(1)TheDepartmentofHealthshallsystematicallyanalyzesuchhealth
equitydatausingthesmallestappropriateunitsofanalysisfeasibletodetect
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racialandethnicdisparities,aswellasdisparitiesalongthelinesofprimary
language,sex,disabilitystatus,sexualorientation,genderidentity,and
socioeconomicstatus,andreporttheresultsofsuchanalysisonthe
Department’swebsiteperiodically,butnotlessthanbiannually.The
Department’sanalysisshallbeusedtomeasureovertimetheimpactofactions
takentoreducehealthdisparitiesinVermont.Thedatainformingthe
Department’sanalysisshallbemadeavailabletothepublicinaccordancewith
Stateandfederallaw.
(2)AnnuallyEverythreeyearsbeginningin2028,onorbeforeJanuary
15,theDepartmentshallsubmitareportcontainingtheresultsoftheanalysis
conductedpursuanttosubdivision(1)ofthissubsectiontotheSenate
CommitteeonHealthandWelfareandtotheHouseCommitteesonHealth
CareandonHumanServices.
***CancerRegistryDisclosureRequirements***
Sec.2.18V.S.A.§ 155isamendedtoread:
§155.DISCLOSURE
***
(b)TheCommissionermayfurnishconfidentialinformationtothe
NationalBreastandCervicalCancerEarlyDetectionProgram,otherstates’
cancerregistries,federalcancercontrolagencies,orhealthresearchersinorder
tocollaborateinanationalcancerregistryortocollaborateincancercontrol
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andpreventionresearchstudies.However,beforereleasingconfidential
information,theCommissionershallfirstobtainfromsuchstateregistries,
agencies,orresearchersanagreementinwritingtokeepassurancesacceptable
totheCommissionerthattheidentifyinginformationshallbekeptconfidential
andprivilegedasrequiredbylaw.Inthecaseofresearchers,the
Commissionershallalsofirstobtainevidenceoftheapprovaloftheir
academiccommitteefortheprotectionofhumansubjectsestablishedin
accordancewith45C.F.R.part46aninstitutionalreviewboardorprivacy
boardinaccordancewith45C.F.R.§ 164.512(i)(1)(i)(A)and(B).
***AmyotrophicLateralSclerosisRegistryDisclosureRequirements***
Sec.3.18V.S.A.§ 174isamendedtoread:
§174.CONFIDENTIALITY
(a)(1)Allidentifyinginformationregardinganindividualpatientorhealth
careproviderisexemptfrompublicinspectionandcopyingunderthePublic
RecordsActandshallbekeptconfidential.
(2)Notwithstandingsubdivision(1)ofthissubsection,the
Commissionermayenterintodatasharingandprotectionagreementswith
researchersorstate,regional,ornationalamyotrophiclateralsclerosis
registriesforbidirectionaldataexchange,providedaccessundersuch
agreementsisconsistentwiththeprivacy,security,anddisclosureprotections
inthischapter.Inthecaseofresearchers,theCommissionershallalsofirst
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obtainevidenceoftheapprovaloftheiracademiccommitteefortheprotection
ofhumansubjectsestablishedinaccordancewith45C.F.R.Part46an
institutionalreviewboardorprivacyboardinaccordancewith45C.F.R.
§ 164.512(i)(1)(i)(A)and(B).TheCommissionershalldisclosetheminimum
informationnecessarytoaccomplishaspecifiedresearchpurpose.
***
***EffectiveDate***
Sec.4.EFFECTIVEDATE
ThisactshalltakeeffectonJuly1,2025.
***HealthEquityDataReporting***
Sec.1.18V.S.A.§ 253isamendedtoread:
§253.DATARESPONSIVETOHEALTHEQUITYINQUIRIES
***
(b)(1)TheDepartmentofHealthshallsystematicallyanalyzesuchhealth
equitydatausingthesmallestappropriateunitsofanalysisfeasibletodetect
racialandethnicdisparities,aswellasdisparitiesalongthelinesofprimary
language,sex,disabilitystatus,sexualorientation,genderidentity,and
socioeconomicstatus,andreporttheresultsofsuchanalysisonthe
Department’swebsiteperiodically,butnotlessthanbiannually.The
Department’sanalysisshallbeusedtomeasureovertimetheimpactofactions
takentoreducehealthdisparitiesinVermont.Thedatainformingthe
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Department’sanalysisshallbemadeavailabletothepublicinaccordance
withStateandfederallaw.
(2)AnnuallyEverythreeyearsbeginningin2028,onorbeforeJanuary
15,theDepartmentshallsubmitareportcontainingtheresultsoftheanalysis
conductedpursuanttosubdivision(1)ofthissubsectiontotheSenate
CommitteeonHealthandWelfareandtotheHouseCommitteesonHealth
CareandonHumanServices.
***CancerRegistryDisclosureRequirements***
Sec.2.18V.S.A.§ 155isamendedtoread:
§155.DISCLOSURE
***
(b)TheCommissionermayfurnishconfidentialinformationtotheNational
BreastandCervicalCancerEarlyDetectionProgram,otherstates’cancer
registries,federalcancercontrolagencies,orhealthresearchersinorderto
collaborateinanationalcancerregistryortocollaborateincancercontrol
andpreventionresearchstudies.However,beforereleasingconfidential
information,theCommissionershallfirstobtainfromsuchstateregistries,
agencies,orresearchersanagreementinwritingtokeepwrittenassurances
acceptabletotheCommissionerthattheidentifyinginformationshallbekept
confidentialandprivilegedasrequiredbylaw.Inthecaseofresearchers,the
Commissionershallalsofirstobtainwrittenevidenceoftheapprovaloftheir BILLASPASSEDBYTHEHOUSE H.293
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academiccommitteefortheprotectionofhumansubjectsestablishedin
accordancewith45C.F.R.part46aninstitutionalreviewboardorprivacy
boardinaccordancewith45C.F.R.§ 164.512(i)(1)(i)(A)and(B).
***AmyotrophicLateralSclerosisRegistryDisclosureRequirements***
Sec.3.18V.S.A.§ 174isamendedtoread:
§174.CONFIDENTIALITY
(a)(1)Allidentifyinginformationregardinganindividualpatientorhealth
careproviderisexemptfrompublicinspectionandcopyingunderthePublic
RecordsActandshallbekeptconfidential.
(2)Notwithstandingsubdivision(1)ofthissubsection,the
Commissionermayenterintodatasharingandprotectionagreementswith
researchersorstate,regional,ornationalamyotrophiclateralsclerosis
registriesforbidirectionaldataexchange,providedaccessundersuch
agreementsisconsistentwiththeprivacy,security,anddisclosureprotections
inthischapter.Inthecaseofresearchers,theCommissionershallalsofirst
obtainwrittenevidenceoftheapprovaloftheiracademiccommitteeforthe
protectionofhumansubjectsestablishedinaccordancewith45C.F.R.Part46
aninstitutionalreviewboardorprivacyboardinaccordancewith45C.F.R.
§ 164.512(i)(1)(i)(A)and(B).TheCommissionershalldisclosetheminimum
informationnecessarytoaccomplishaspecifiedresearchpurpose.
*** BILLASPASSEDBYTHEHOUSE H.293
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***EffectiveDate***
Sec.4.EFFECTIVEDATE
ThisactshalltakeeffectonJuly1,2025.