How Can Vital Statistics Remain Vital for Measuring Health Status in the U.S.? Charles J. Rothwell Centers for Disease Control and Prevention National Center for Health Statistics

Vital Statistics Attributes Core of our health data systems Basic data for public health, social science, economic planning and program development Monitors key indicators of health world- wide and at the local, state and national level Tracks progress to national health goals Identifies health disparities Alerts us to emerging health problems

However Vital Statistics is becoming a chronicle of the past How can this be changed?

Computerization in U.S. Vital Registration & Statistics in 2004 In general computerization in health care in the U.S. lacking except for claims processing Birth record – Perinatal record of mother and child Death record – demographic/registration – Funeral Directors; Medical – certifying physicians

Computerization in U.S. Vital Registration & Statistics in 2004 Vital Registration at the State level was automated but with old systems Most states had automated birth registration systems in hospitals but standalone, antiquated and not easy to modify – no use of the internet Death registration was paper based No electronic linkage between states

Computerization in U.S. Vital Registration & Statistics in 2004 No linkage to automated medical records National systems – mainframe/batch National systems: annual reporting Preliminary reporting when 90 +% complete – still late Final reporting - very delayed – getting worse

2004: Much Needed to be Done! States needed to re-engineer vital registration systems at the source using the internet data transmission standards needed to be developed - linkage to emerging electronic medical records data transfer system needed to allow states to transfer to other states, NCHS and other Federal agencies

2004: Much Needed to be Done! States needed to change vital registration law to support electronic collection and issuance of vital records NCHS needed to improve automated mortality coding system & provide other internet based software seamlessly through state automated registration systems

2004: Much Needed to be Done! NCHS needed to re-engineer its internal systems to edit at time of data receipt NCHS needed to move away from annual processing and reporting to year-to-date.

Status 2011 re-engineering the internal NCHS systems has been completed and is now accepting data transmission from the states In an SQL Server environment processes vital records from the 57 jurisdictions easy access of data for analytical and dissemination purposes at any stage in processing the records – but much remains to be done

Status 2011 Record exchange system between states complete – 16 states using STEVE – 6 on the way EBR’s and EDR’s re-engineered based on consensus standards 35 states with EBR’s 31 states with EDR’s – but not complete coverage

Status 2011 NCHS developed systems for improving the quality and timeliness of mortality statistics Views – Web-based service with EDR’s – improve input to automated medical coding systems Web-based tutorial for physicians developed

Status 2011 HL7 standards for data sharing between EBR’s, EDR’s and electronic medical records developed – much work remains Automated and manual medical coding now done at NCHS Draft Model Law for 2011 developed supporting electronic registration and security

On the Horizon Question-based cause of death input in the making – but only in beginning stage Pilot data sharing between electronic medical records and vitals If data sharing successful – determining responsibility for collecting data items

On the Horizon: Mortality Surveillance What’s the vision? Near real-time identification of deaths due to rare or other specified causes Continuous monitoring for emerging temporal and/or spatial clusters Automated (daily/weekly/monthly) reporting on select causes of death Effective paths for communicating with partners (federal, state, and local)

On the Horizon: Mortality Surveillance What’s being done to get there? New staff position with primary focus on surveillance activities Dedicated federal programmers & support by contract technical staff Funding selected states for more current data

Future Challenges Data availability vs. confidentiality Electronic health records standards – will they be followed? Is surveillance possible and is it a responsibility of a statistical agency? Does it makes sense to go to a single EBR and EDR for use by all states?