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Maternal MortalitySurveillanceChallenges and Opportunities for CollaborationMarilyn A. Kacica, M.D., M.P.H.New York State Department of HealthFebruary 13, 2012
Maternal Mortality Rate: NYS & US 1997–2008
Historical Overview NYSMaternal Mortality ReviewVoluntary reporting The Safe Motherhood Initiativeo Maternal deaths were voluntarily reported and reviewedo Limited reporting, extensive reviewAdverse event reporting New York Patient Occurrence Reporting and Tracking SystemooooPatient Safety effortReports of all hospital adverse eventsLimited view (Adverse events reporting)Confidentiality limits useVital Records reportingo Death certificate indicator for pregnancy
Maternal Mortality Cases by VariousReporting SourcesYEARNYSDOHVITAL RECORDS*(rate, per 100k)SAFE MOTHERHOODINITIATIVENYPORTS200873 (28.9)1728200740 (15.8)830200648 (19.3)236200537 (15.1)222200451 (20.5)2541200353 (20.9)632*Underlying cause of death Complication of pregnancy or childbirth (ICD-10 codes O00-O99)
Surveillance and ReviewStatewide Maternal MortalityReview Programo Examines circumstances of women’s deathsaround pregnancy and prevent future deathso Identifies gaps in services and systems thatshould be improvedo Conducts case ascertainment using death,hospital and event reportingo Establishes a review processo Convenes all players at table in collaborativework
Challenges to ConductingStatewide MMR Surveillance Data source quality issues Quality assurance during reviewo Case confidentiality protectiono Development of data collection tool Limited resources Case ascertainment
Data Sources New York Patient Occurrence andTracking System (NYPORTS) Vital Records Death Files/Birth Files Statewide Planning and ResearchCooperative System(SPARCS) hospitaldischarge files
NYS Data SourceConfidentiality ChallengesNYPORTS No secondary releaseo Public Health Law Article 28 hospitals §2805-lo § 2805-l: Incident reporting “All hospitals shall be required to report maternaldeath“o § 2805-m: Confidentiality “data .shall not be released except to thedepartment”
NYS Data SourceConfidentiality ChallengesVital Records Death Files Vital Records and IRB approval needed NYC jurisdiction Vital records and IRBapproval neededSPARCS Hospital Discharge Files Data Protection Review Board and IRBapproval needed
Challenges to ConductingStatewide MMR SurveillanceCreating a collaborative working relationship Advocacy groupsData stewardsProvidersLocal government
Challenges for CollaborationAmong StatesLimited number of state programsConfidentiality of data In NYS, NYPORTS data cannot be shared for any purpose Vital Records data cannot be accessed in some cases This may differ from state-to-stateLack of consistency between state programs Varying data collection tools Varying data definitionsNo shared standards CDC has guidance, but not necessarily adopted by all states Case definitions may vary (e.g. CDC, WHO)
Challenges for CollaborationAmong StatesLack of consistency between data sources In NYS, death and hospital data have different countycoding systemsData sources may be different Autopsy may not be available Some may be more complete than othersTimeliness of data availability NYS Vital records needs 2- 2 ½ years to finalize data NYPORTS needs about 6 months for root causeanalysis This will differ among states
Challenges for CollaborationAmong StatesData quality may be different from one jurisdiction tothe next Hospital data may be missing birth date, date of deathor inaccurate Vital records may be missing pregnancy indicatorDesire to collaborate with successful program Who has demonstrated success?Limited federal resources to support collaboration andsharing Funding Staffing
Opportunities For CollaborationSpeak the Same LanguageStandardize Maternal Mortality Surveillance Data (coding, collection)o Develop common data dictionaryo Use similar questions and data elementso Use similar categories Autopsy protocolso Create and disseminate protocols for when and how to autopsy Case ascertainmento Use similar data sourceso Shared algorithms for matching data sources
Opportunities For CollaborationSpeak the Same LanguageStandardize Maternal Mortality Surveillance Review toolso Shared tool for reviewo Shared protocols for review process Analysiso Core set of data analysiso Core set of tables, charts, graphs, reportsShare cross jurisdictional cases New York resident died in New Jersey hospital
Opportunities For CollaborationShare What WorksInterventions In New York Stateo Hypertensive Disorders of Pregnancy Guidanceo Hemorrhage Guidanceo Other chronic diseases during pregnancy
Opportunities For CollaborationDevelop New KnowledgeCollaborative development of researchrecommendations Identification of risk factors and cause of death Pooling state data for increased power Prioritizing activities and guiding resourceallocation
Opportunities For CollaborationCreate a CommunityEducation Professionalo Medical Examiner/Coroner, pathologistso Provider coding of death certificates Publico Pregnancy risks associated with obesity, hypertensionSystem changes Improve the death certificate process Involve Coroners and Medical Examiners Improve autopsy protocols to better record cause of deathTechnical assistance State-to-state Federal-to-state
Opportunities For CollaborationCreate a CommunitySharing Program authorization languageConfidentiality statutesData collection tools that have been developedInterventions implementedOrganizing to create funding opportunities Federal resources Malpractice insurers Provider organizations
Future ObjectivesShare policies, standards, practices, andservices between Maternal MortalityReview Committees
Future Goals for Collaboration Provide leadership in the development of sharedpolicies, standards, practices Consider a National Maternal Mortality ReviewCommittee Create a library of standardized materials includingreview forms, procedures and policies for review team Develop information-sharing policies and agreementsthat enhance sharing and protect privacy and security
Data (coding, collection) o Develop common data dictionary o Use similar questions and data elements o Use similar categories Autopsy protocols o Create and disseminate protocols for when and how to autopsy Case ascertainment o Use similar data sources o Sha
