1. Who’s Keeping Score? Changes in the Vital Records and Statistics Infrastructure in the Computer Age Daniel J. Friedman The NAPHSIS/NCHS Collaboration— Past Successes and Future Challenges Salt Lake City 4 June 2007

2. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Topics 1. Purpose 2. Definitions 3. Historical perspective 4. Methods 5. Findings 6. Reflections

3. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 But first, thanks to... NAPHSIS executive committee Advisory committee NAPHSIS membership NCHS Former NCHS and NAPHSIS seniors

4. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Purpose To assess changes in the vital records and statistics infrastructure at state and national levels since ~1980 Performance Uses Resources Focus primarily upon public health statistics applications of birth and death records, not civil registration

5. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Definitions Vital records functions include: Registration Certification Issuance Corrections Amendments Quality control and information systems activities directly supporting vital records

6. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Definitions Vital statistics functions include: Statistical analysis Compilation of vital records data Quality control and information systems activities directly supporting vital statistics Other health statistics functions not included

7. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Definitions “States”=52 jurisdictions 50 states New York City and Washington, D.C.

8. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Historical perspective Stages of U.S. vital records and statistics infrastructure 1. Colonial mandating of reporting (1632) 2. Central state collection (1842) 3. National establishment of registration areas (1880) 4. Integral component of public health structure

9. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Historical perspective 5. Increased computerization and cooperation (1968) Computerization ACME (1968) Computer tapes to NCHS (1971) Changing relationship between NCHS and states VSCP (1973) Enhanced emphasis on analysis State centers for health statistics (1969) Expanded use for administrative purposes SSA EAB (1987)

10. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Methods--Indicators Quantitative State and national levels Selection via D-S-L indicator decision funnel

11. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 D-S-L indicator decision funnel #1. Potential indicators #2. Indicators with data available #3. Indicators with data available and meaningful a. valid b. inter-state consistency c. over-time consistency d. actionable #4. Ratio of meaningfulness to data collection effort #5. Final selected indicators

12. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Methods—Data sources National Center for Health Statistics Published data Unpublished data National Library of Medicine—PubMed New York Times archives Delphi survey

13. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Methods—Data sources Web surveys of state vital records and statistics offices Survey #1 Assess if states provide or estimate data 73 indicators 1980-2005 for six selected years 28 responding jurisdictions Survey #2 States provide or estimate data 31 indicators 1980-2005, with selected years varying among questions 31 responding jurisdictions

14. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Methods--Limitations Gap between needed potential indicators and indicators with data available Varying Data sources Data quality Some self-reported Actual data Estimated data Sample sizes and generalizability Start dates

15. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Findings--Performance IndicatorBirthsDeaths #days from event to registration  % records electronically transmitted  % births with non-stated --delivery method  --birth weight  --#prenatal care visits 

16. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Findings--Performance IndicatorBirthsDeaths % deaths with ill-defined underlying cause  # states adopting revised standard certificates  # calendar days from data year end to NCHS file closure  # days from data year end to publication in state annual report  # days from NCHS file closure to publication in NCHS report  

17. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Findings--Uses IndicatorsBirthsDeaths # event registrations  # birth certificate amendments processed  # certificate copies issued  # National Death Index --applications submitted  --file searches 

18. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Findings--Uses IndicatorBirthsDeaths % states making birth or death data available on Web  % states making birth or death available through interactive system on Web  # special topic reports on births or deaths by state health department  # new research applications for individually identifiable birth or death data  # projects with release of individually identifiable birth or death data to government programs for administrative purposes  # articles in peer-reviewed journals using birth or death records as data source or sampling frame  # New York Times articles citing NCHS and births or deaths 

19. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Findings--Resources IndicatorVital recordsVital statistics # NCHS training courses  State health department staffing  NCHS budget --total  --VSCP as % of total budget 

20. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Findings--Resources Indicator State health department expenditures --total expenditures for vital records and statistics  --expenditures from retained fees  --expenditures from federal funds  --expenditures for vital records  --expenditures for vital statistics 

21. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Findings—Central themes 1. Computerization improved performance for both vital records and vital statistics EBC has helped to improve births performance much more than deaths 2. National system threatened by dramatic decline in implementation of revised standard certificates 3. Administrative and research uses greatly increased 4. Huge increase in uses not accompanied by concomitant increases in resources

22. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Reflections U.S. vital records Essential Ubiquitous U.S. vital statistics Essential Ubiquitous

23. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Reflections BUT... minimal attention to health and well-being of vital records and vital statistics infrastructure

24. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Reflections Our colleagues in infrastructure improvement Henry Chadwick (1824-1908) W. Edwards Deming (1900-1993) “There is no substitute for knowledge” “You can expect what you inspect” “A system must be managed. It will not manage itself.” “The problem is at the top; management is the problem.”

25. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 AL—East Standings (May 21 st ) TeamWonLost BostonA lotNot many BaltimoreSomeMany New YorkFewerEven more TorontoFewerEven more + Tampa BayIs this an AL team?They stink

26. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 AL—East Standings (May 21 st ) TeamWonLost Boston  Baltimore  New York  Toronto  Tampa Bay 

27. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 AL—East Standings (May 21 st ) TeamWonLostPct. Boston3013.698 Baltimore2024.455 New York1923.452 Toronto1924.442 Tampa Bay1825.419

28. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Reflections HELP WANTED... A few good metrics

29. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007 Reflections NationalState RecordsStatisticsRecordsStatistics Performance Uses Resources

30. The NAPHSIS/NCHS Collaboration Past Successes and Future Challenges Salt Lake City, UT June 3 rd – 7 th, 2007