Electronic Death Registration Systems

in the United States

Rose TrasattiProject Manager

National Association for Public Health Statistics and Information Systems

Electronic Death Registration SystemsAnd

Mortality Surveillance for Pandemic InfluenzaConference Call

November 14, 2007

NAPHSISNational Association for Public Health Statistics and Information SystemsRepresents all 57 health statistics and vital registration jurisdictionsFunded by SSA since 1999 to support development of EDR systems throughout the U.S.SSA has provided funding to 31 jurisdictions for the development and implementation of EDR systemswww.naphsis.org

Certificate of DeathPermanent legal record of fact and cause of deathIdentifies deceased individualIncludes demographic information of the deceasedSpecifies final disposition of the bodySpecifies the cause of death of the deceasedProvides information about the funeral director and medical certifier completing the record

Certificate of Death usages

Used for both administrative and public health analytical needsNecessary for the family to handle the business matters of the decedentSource of mortality statistics at national and jurisdictional levelData used to: Allocate research and development funding Establish goals related to public health Measure health status

What is EDR?

Electronic filing of death certificatesOn-line collaboration among multiple death registration system users User-friendly death record data entry screens Fact-of-Death data entry Cause-of-Death data entry

Built-in instructions and on-line helpInternet accessibilityElectronic authentication User IDs/passwords Personal Identification Numbers (PINs) Biometrics

Who benefits from an EDRS?

Physicians, medical examiners and coronersInstitutions Hospitals Nursing Homes Hospice

Funeral directorsLocal and state registrarsFederal, state and local agenciesPublic health researchersFamilies

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Benefits of an EDRS

Greater efficiency- participants interact electronicallyImproved timeliness of death registrationHigher quality data via real-time edits Reduces errors in and rejection of death

certificates Promotes uniformity in demographic and cause-of-

death statistics

Increased security and fraud preventionSupports partial electronic/paper death registration

Benefits of an EDRS

Capability to report fact-of-death to SSA with increased accuracy and timeliness Verified Social Security numbers

Capability to report cause-of-death with increased accuracy and timeliness Integral part of patient care Uniformity in cause-of-death statistics Improves the cause-of-death data for electronic

disease surveillance systems

Benefits of an EDRS

Electronic referrals to Medical Examiners/Coroners by Physicians Funeral directors Health departments Key terms (fall, laceration, hypothermia…)

Electronic submission of supplemental cause-of-death information for pending investigationsElectronic cremation approvalsPrinting of the Burial Permit at the Funeral HomeElectronic trade calls between Funeral HomesOrdering of certified copies

EDRS implementation challenges

An EDRS is a complex system Numerous data items with extensive edit checks Detailed business rules and workflow Multiple users working on the same death

record Many users accessing the system from many

points Internet application with a need for high-levels

of security

EDRS implementation challenges

An EDRS is a complex system Costly to develop Takes time to configure/customize system to

meet requirements Numerous participants

Need to be trained Need to be provided access to the EDR system Help desk

Requires the availability of Department of Health resources

EDRS implementation challenges

EDRS funding is needed for Hardware costs

Servers Biometric devices

System development costs Vendor In-house

Staff resources throughout project life cycle Training Ongoing maintenance

Help desk Hardware/software Training new users

Sample EDR system development and implementation costs

Software system development/purchase

Software licenses

Hardware Hardware licenses

Data storage Personnel costs

$1,491,395 $63,233 $203,599 $2,632,256

$100,000 $15,000 $75,000 $250,000 (vendor) + $50,000 IT + $75,000 VR staff

$500,000 $154,000

$500,000 $200,000 $300,000 $300,000

$ ~ 1.5 million for both software and licenses                

$83,000 $10,000 $300,000

$ 631,000 development, on-site support, and training  

$96,000   $130,000 $1,500,000

$291,300 $100,000

$170,000 $230,000 (provided to Funeral Homes for hardware)

$120,000

$1,221,362 $6,500 $26,000 $300,000

$55,000 $8,000 $10,000 $7,000 $40,000

EDRS implementation challenges

Because an EDRS is a complex system, in order to be successful a jurisdiction must have: Well defined requirements Realistic schedule Sufficient funding Technical expertise in developing the system Sufficient participation by stakeholders in the

full project lifecycle Adequate infrastructure and connectivity to the

Internet

EDRS experiences – what we learned

Important to market and garner EDRS support National level Local level

Commonality among jurisdictions related to EDRStandards and guidelines can provide assistance in EDRS developmentA national model defining requirements can provide a starting point for EDRS developmentJurisdictions can learn from each other Focal point of contact needed to facilitate communication

NAPHSIS EDRS activities

Focus on education and marketing at the national level Death data providers State and local government Federal agencies Death data users

Developed marketing brochures and training packages

NAPHSIS EDR marketing brochures

NAPHSIS EDRS activities

Exhibited EDR booth and spoken at national level conferences National Funeral Director Association National Association of Medical Examiners Alliance for Continuing Medical Education Association for Hospital Medical Education American Medical Association Continuing

Medical Education Director’s Taskforce

NAPHSIS EDRS activities

Provide consulting services to jurisdictions for implementing EDR systems Meet with vital records agencies/vital records

staff Meet with EDR participants Help review EDRS materials developed in-house

or by a vendor Facilitate communication with other jurisdictions Established an EDR Documentation Library

EDRS Standards & Guidelines EDRS RFP Template and Proposal Evaluation Guide EDRS Best Practices and Lessons Learned

Assist jurisdictions with the tailoring of the EDRS National Model to meet their needs

EDRS National Model

Model meets 80-85% of any jurisdiction’s electronic death registration requirementsAddressed the needs of the death data providersIncluded participation from multiple jurisdictions Re-engineering artifacts developed Components are modular Use cases and activity diagrams Recommended reports, files, outputs EDR system requirements and business rules

Alaska

California

Idaho

Oregon

Washington

Montana

Wyoming

Utah

Colorado

ArizonaNew Mexico

Texas

Oklahoma

Kansas

Nebraska

South Dakota

North Dakota Minnesota

Wisconsin

Iowa

Illinois

OhioIndiana

Kentucky

WV

Virginia

N. Carolina

Georgia

Florida

AlabamaMS

Missouri

Arkansas

LA

Nevada

Hawaii

Michigan

PennsylvaniaNJ

New York CT

MA

VT

NH

Maine

Tennessee

MD

DE

RI

DC

S. Carolina

Electronic Death Registration Systems, by Jurisdiction,With SSA Funding Indicator, July 2007

New York City

StatusUp and Running In Development Planning/Requirements Stage

Received SSA Funding

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EDR Collaboration and Partnerships

Department of Health (DOH) Vital Records Directors Influenza Coordinators BT Coordinators State Epidemiologists

EDR Users Physicians, Medical Examiners, Coroners Hospitals, Nursing Homes, Hospice Care Funeral Directors

Participate in the planning processInvite DOH staff to write articles for local publications

NAPHSIS contact information

Rose TrasattiProject Manager

National Association for Public Health Statistics and Information Systems

(NAPHSIS)801 Roeder Road Suite 650

Silver Spring, Maryland 20910(301) 563-6001 (phone)

(301) 563-6012 (fax)www.naphsis.org

rtrasatti@naphsis.org