Maternal Mortality Surveillance Challenges and Opportunities for Collaboration Marilyn A. Kacica, M.D., M.P.H. New York State Department of Health February 13, 2012
Maternal Mortality Rate: NYS & US 1997 2008
Historical Overview NYS Maternal Mortality Review Voluntary reporting The Safe Motherhood Initiative o Maternal deaths were voluntarily reported and reviewed o Limited reporting, extensive review Adverse event reporting New York Patient Occurrence Reporting and Tracking System o Patient Safety effort o Reports of all hospital adverse events o Limited view (Adverse events reporting) o Confidentiality limits use Vital Records reporting o Death certificate indicator for pregnancy
Maternal Mortality Cases by Various Reporting Sources YEAR NYSDOH VITAL RECORDS* (rate, per 100k) SAFE MOTHERHOOD INITIATIVE NYPORTS 2008 73 (28.9) 17 28 2007 40 (15.8) 8 30 2006 48 (19.3) 2 36 2005 37 (15.1) 2 22 2004 51 (20.5) 25 41 2003 53 (20.9) 6 32 *Underlying cause of death = Complication of pregnancy or childbirth (ICD-10 codes O00-O99)
Surveillance and Review Statewide Maternal Mortality Review Program o Examines circumstances of women s deaths around pregnancy and prevent future deaths o Identifies gaps in services and systems that should be improved o Conducts case ascertainment using death, hospital and event reporting o Establishes a review process o Convenes all players at table in collaborative work
Challenges to Conducting Statewide MMR Surveillance Data source quality issues Quality assurance during review o Case confidentiality protection o Development of data collection tool Limited resources Case ascertainment
Data Sources New York Patient Occurrence and Tracking System (NYPORTS) Vital Records Death Files/Birth Files Statewide Planning and Research Cooperative System(SPARCS) hospital discharge files
NYS Data Source Confidentiality Challenges NYPORTS No secondary release o Public Health Law Article 28 hospitals 2805-l o 2805-l: Incident reporting All hospitals shall be required to report maternal death o 2805-m: Confidentiality data.shall not be released except to the department
NYS Data Source Confidentiality Challenges Vital Records Death Files Vital Records and IRB approval needed NYC jurisdiction Vital records and IRB approval needed SPARCS Hospital Discharge Files Data Protection Review Board and IRB approval needed
Challenges to Conducting Statewide MMR Surveillance Creating a collaborative working relationship Advocacy groups Data stewards Providers Local government
Challenges for Collaboration Among States Limited number of state programs Confidentiality 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-state Lack of consistency between state programs Varying data collection tools Varying data definitions No shared standards CDC has guidance, but not necessarily adopted by all states Case definitions may vary (e.g. CDC, WHO)
Challenges for Collaboration Among States Lack of consistency between data sources In NYS, death and hospital data have different county coding systems Data sources may be different Autopsy may not be available Some may be more complete than others Timeliness of data availability NYS Vital records needs 2-2 ½ years to finalize data NYPORTS needs about 6 months for root cause analysis This will differ among states
Challenges for Collaboration Among States Data quality may be different from one jurisdiction to the next Hospital data may be missing birth date, date of death or inaccurate Vital records may be missing pregnancy indicator Desire to collaborate with successful program Who has demonstrated success? Limited federal resources to support collaboration and sharing Funding Staffing
Opportunities For Collaboration Speak the Same Language Standardize Maternal Mortality Surveillance 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 Shared algorithms for matching data sources
Opportunities For Collaboration Speak the Same Language Standardize Maternal Mortality Surveillance Review tools o Shared tool for review o Shared protocols for review process Analysis o Core set of data analysis o Core set of tables, charts, graphs, reports Share cross jurisdictional cases New York resident died in New Jersey hospital
Opportunities For Collaboration Share What Works Interventions In New York State o Hypertensive Disorders of Pregnancy Guidance o Hemorrhage Guidance o Other chronic diseases during pregnancy
Opportunities For Collaboration Develop New Knowledge Collaborative development of research recommendations Identification of risk factors and cause of death Pooling state data for increased power Prioritizing activities and guiding resource allocation
Opportunities For Collaboration Create a Community Education Professional o Medical Examiner/Coroner, pathologists o Provider coding of death certificates Public o Pregnancy risks associated with obesity, hypertension System changes Improve the death certificate process Involve Coroners and Medical Examiners Improve autopsy protocols to better record cause of death Technical assistance State-to-state Federal-to-state
Opportunities For Collaboration Create a Community Sharing Program authorization language Confidentiality statutes Data collection tools that have been developed Interventions implemented Organizing to create funding opportunities Federal resources Malpractice insurers Provider organizations
Future Objectives Share policies, standards, practices, and services between Maternal Mortality Review Committees
Future Goals for Collaboration Provide leadership in the development of shared policies, standards, practices Consider a National Maternal Mortality Review Committee Create a library of standardized materials including review forms, procedures and policies for review team Develop information-sharing policies and agreements that enhance sharing and protect privacy and security