maternal mortality surveillance - amchp · in nys, nyports data cannot be shared for any purpose...
TRANSCRIPT
Maternal Mortality
Surveillance
Marilyn A. Kacica, M.D., M.P.H.
New York State Department of Health
February 13, 2012
Challenges and Opportunities for Collaboration
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
oExamines circumstances of women’s deaths
around pregnancy and prevent future deaths
o Identifies gaps in services and systems that
should be improved
oConducts case ascertainment using death,
hospital and event reporting
oEstablishes a review process
oConvenes 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
oPublic 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
oHypertensive Disorders of Pregnancy Guidance
oHemorrhage Guidance
oOther 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