1. In research and in treatment no denominators can be found... without civil registration & vital statistics Erin K. Nichols, PhD, MPH 20 June 2012 USPHS Scientific and Training Symposium National Center for Health Statistics International Statistics Program

2. Developing the National Prevention and Health Promotion Strategy Prioritize evidence-based policy and program interventions to address both the leading causes of death and disability in the United States and the preventable behaviors that contribute to those causes.

3. Overview  Overview of civil registration and vital statistics (CR/VS) systems  Vital statistics  Uses  Quality  CR/VS systems around the world  Status of systems  Efforts to improve

5. Civil Registration System A system government uses to record vital events as required by laws or regulations of the country Community volunteer gathering information in the Northern Region of Ghana. Main purpose – To establish the legal documents required by law Goal – To record all vital events occurring in the country as they occur

6. Characteristics of Civil Registration Legal framework Full coverage of population Continuous & permanent Confidentiality of personal information

7. Vital Statistics System The process of collecting, compiling & analyzing information from vital events filed through the civil registration system Main purpose – Presentation of vital event data in statistical form Goal – To have accurate data from all vital events occurring in the country Health Metrics Network

8. The Civil Registration System creates a data source for Vital Statistics Civil Registration System Civil Registry Database Vital Statistics

9. Sources of Vital Records CR/VS DataCensusSurveys Advantages + Complete data + Continuous data + Data are fully representative + Low cost to maintain + Small area data + Complete data + Broader scope + Well recognized & supported by governments + Smaller number of observations + Customizable + Low cost/ survey + Closer monitoring; better data quality + Can be representative Disadvantages - Expensive up front cost; many resources required - Limited scope - Requires inter- ministerial cooperation - Not continuous - Many resources required - Higher cost - Difficult to monitor; lower data quality - Lack of in-depth information - Not continuous - Only estimates - Expensive for continuous surveys - Inability to produce small area estimates

10. Uses of Vital Statistics Planning human development, monitoring, population dynamics & projections, small area data Only nationally representative source for: CDC, NVSS, 2007 – Mortality by cause of death – Risks of premature death by sex & age – Relative risks of death among subgroups – Cause-specific risk of dying trends

11. Mahapatra et al. (2007) Assessment Framework Timeliness Production time Regularity Accessibility Media Metadata User service Relevance Routine tabulations Small area statistics Comparability Over time Across space Accuracy Completeness & coverage Missing data* Use of ill-defined categories Improbable classifications * other models also include erroneous data Quality of Vital Statistics Data

12. Accuracy of Vital Statistics Coverage Error 1. Completeness & coverage  Evaluated by: analysis of trends & frequency distributions  Anomalies caused by reporting practices, i.e. digit preference Content Error 2. Missing & erroneous data 3. Use of ill-defined categories 4. Improbable classifications

13. Content Error: Problems with Birth & Death Data ProblemExamples Source & Accuracy of Information Informant does not know correct information Mother does not recall her medical care information (for births) Sensitive information not given correctly Missing Records Records not registered in some geographic areas or for some population groups Late records not included in statistical files Death records for low weight infants, infants who die, and children are known to be poorly registered Births/deaths occurring at home are not registered Missing Information Medical items often left blank Data skewed due to missing items for some population groups Errors in Preparation & Processing Transcription errors when data entered in record Coding & keying errors Errors in computer software programs Statistical/medical information not correctly linked to legal information when separate collection systems used ICD rules not correctly applied for underlying cause of death

14. Problems with Mortality Data Numerators: – Diagnosis errors – Changes in coding rules-ICD – Classification/coding errors – No contributory causes – Age/race/ethnicity errors Denominators: – Erroneous population estimates far from census – Change in age structure can affect age-adjusted rates – Population estimation challenging for small areas/groups

15. Characteristics to Assess for Comparability of Vital Statistics Data Quality Consistency Methodology Coverage Time period Choice of Countries Comparability Presentation & Interpretation Presentation Explanation Underlying differentials Context Australian Institute of Health and Welfare 2012. A working guide to international comparisons of health.

16. US Fetal Deaths: 350+ grams or 20+ completed weeks gestation if weight is unknown US Live Births US/WHO Recommended Definition Shortened Definition No Formal Definition 48 registration areas 5 registration areas 4 registration areas All periods 20+ wks 5+ mos 16+ wks 500+ g 350+ g 350+ g or 20+ weeks 400+ g or 20+ weeks 500+ g or 20+ weeks 11 areas 25 areas 1 area 1 area 3 areas 1 area 13 areas 1 area 1 area

18. CR/VS Systems around the World: The Challenge  48 million infants are not registered each year (~ 40%)  38 million deaths are not registered (2/3 of all deaths globally)  85 countries have zero or unreliable cause of death information  an additional 52 have low-quality data

19. WHO, 2007

20. Previous International Efforts to Strengthen CR/VS Systems Setting standards to improve VS comparability International collection & publication of data Strengthening national statistical systems – Not a government priority – Lack of recognition as key component of development

21. What Has Changed?  Most countries are now more developed  Mobile technology is eliminating previous communication problems  National ID systems require birth, death info.  Focus on unique advantages of CR/VS: Identification – via birth registration Continuous data flow Small area data Cause of death information Inexpensive data source

22. Creating Demand for Vital Statistics Millennium Development Goals # 4 (child mortality) & # 5 (maternal mortality)  Best measured via vital statistics

23. CR/VS Improvement Create demand by requiring certificates for government services IT & mobile technology applications Collaborations to leverage efforts & budgets Establishing regional training sites: to promote South – South technical assistance Employing community health workers to record events at household level

24. NCHS International Statistics Program CR/VS Improvement Project Providing training & technical assistance to countries Facilitating South to South technical assistance / regional training centers Conducting demonstration projects Developing curriculum for CDC’s Field Epidemiology Training Program

25. Hans Rosling’s Gapminder www.gapminder.org www.bit.ly/L8eQy4

26. Erin K. Nichols E-mail: igd1@cdc.gov Web: http://www.cdc.gov The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. National Center for Health Statistics International Statistics Program Thank you!