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

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

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