Mike Hogarth, MD, FACP DATA FROM LIFE S UNAVOIDABLE EVENTS CALIFORNIA S BIRTH AND DEATH REGISTRIES

Mike Hogarth, MD, FACP DATA FROM LIFE S UNAVOIDABLE EVENTS CALIFORNIA S BIRTH AND DEATH REGISTRIES

Overview The history behind vital records and vital statistics The importance of vital statistics The evolution towards electronic vital records California Birth and Death Registration Systems Current trends and future possibilities

Where the story begins N. Italy and Bills of Mortality 12 th century trade routes the venetian routes Northern Italy Trade routes dominated by Venice, reached their peak in the 15 th century - Marco Polo started his first journey east from Venice in 1260 Crowding and travel created conditions for epidemics like the plague, cholera, typhus (Florence had 37,000 inhabitants by 1420) When epidemics came, the wealthy and servants fled -- causing significant disruption to city s economy Deaths begin to be registered by city government Florence 1385 Milan 1452 Bologna 1456 Mantua 1496 Venice 1504 The plague of Florence - 1348 Most of Europe adopts the practice by the 16 th century

Bills of Mortality, John Graunt, and Demography Bills of Mortality in England Started in London, Nov 1532 Produced intermittently by parishes in London during outbreaks of the plague until Graunt s book John Graunt and demography Demography - the statistical study of human populations statistics = data about the state John Graunt A clothing dealer who became involved in politics and became interested in mortality statistics Graunt decided to take the published Bills of Mortality and analyze them Natural and Political Observations made upon the Bills of Mortality Published life expectancy, death rate, birth rates, population estimates Book had a great influence in Europe Greatly influenced Charles II Graunt s work was then ignored for 240 yrs

The importance of vital records in population health is re-discovered England c.1840 One in three children died before their 3 rd birthday Life expectancy of a working class man in Manchester, England was 17 Cholera killed >50,000 in 1848 Had a significant impact on productivity Typical conditions at the time: - Open sewers - No water treatment - Shared toilets - Shared water sources - Overcrowding Edwin Chadwick Used vital records in producing report highlighting sanitation in preventing disease Led to the Public Health Act of 1848

Vital Statistics in the US: A journey through Americana Civil Registration of births, deaths and marriages in N. America began with the Colony of Virginia in 1632 Massachusetts Bay Colony passed a similar law in 1639 Intent protection of rights related to ownership and distribution of property Requiring birth and death reporting (Boston 1642) Registration of Vital Events Virginia c.1640 Jamestown Riverfront - 1630

Formalizing U.S. National Vital Statistics 1844 Massachusetts legislature Required central state filing, standard forms, fees and penalties for non-reporting Specified types of causes of death 1902 U.S Bureau of the Census Dir. of this agency authorized to obtain copies from the states and publish data from these records 1933 all states registering births and deaths US Standard Certificate of Death Federal government pays 4c/record 1960 National Center for Health Statistics Responsible for collecting vital records and publishing statistics (mortality, natality) 1971 Florida transmits data in magnetic tape US Standard Certificate of Death Federal government pays 4c/record Lemuel Schattuck father of American vital statistics system School teacher, publisher In retirement became interested in vital statistics after family member died Death Certificate, 1939

Coding causes of data in the US Coding of causes began in 1968 with the 8 th revision of ICD (ICD-8) NCHS developed Mortality Medical Data System (MDDS) automatically assigns an ICD code to a death based on the causes Today: SuperMICAR (Medical Indexing, Classification, and Retrieval) takes narrative text in the multiple causes and assigns ICD codes using rules and NLP. TRANSAX (TRANSlation of Axis) transforms axis of classification from entity to record (person) Essentially rolls up all the codes from the multiple causes and decides what is the best single ICD code for that death

Vital Records Today What are the vital records? Certificate of Live Birth Report of Fetal Death Still birth or fetal death after 20 weeks gestation Certificate of Death Marriage Certificate All 57 US states and territories issue the four documents with copies sold to NCHS Value of Vital Records California distributes its birth/death data to over 50 different state and federal agencies for administrative or statistical purposes Latency in Reporting Without electronic registration, Vital Statistics Data Files are typically available no sooner than 24-36 months after the reporting year (ie, 3 years late) NCHS provides natality and mortality files Mortality files are coded with ICD-10 (since 1996) 1 code per decedent

The Birth of Electronic Vital Record Registration: California s Automated Vital Statistics System (AVSS) Dr. Ron Williams (UCSB) Research economist interested in the economic impact of maternalchild health Had to get data from paper birth certificates and type data into his database He resolved to develop an EBRS, which was then licensed to counties, which then had digital data 1980 AVSS is the first electronic birth registration system in the world 1981 world s first electronic birth certificate registered (Santa Barbara Cottage Hospital)

E-Vital Initiative (2008) Purpose establish common electronic processes for federal and state agencies to collect, analyze, and share death/birth record information Components Electronic Death Registration Systems (EDRS) All jurisdictions already had electronic birth registration Electronic Verification of Vital Events (EVVE) Immediate authentication of legitimacy for US birth certificates State and Territorial Exchange of Vital Events (STEVE) Send death certificate data from jurisdiction of death to jurisdiction of residence

California Death Registration Today - 100% Only Digital paperless

California EDRS (CA-EDRS) Deaths/Year ~ CA-EDRS CA-FDRS MD-EDRS 250,000 2,500 45,000 Go Live Jan 1, 2005 May 1, 2013 Jan 1, 2015 Users 4,438 1,871 1,852 Funeral Directors 753 271 671 FH Staff 1,860 748 427 Certifiers 0 0 400 MF Staff 566 251 46 ME/Coroners 491 251 16 Organizations 1,512 1,512 404 Funeral Homes 1,177 1,177 372 Hospitals 208 208 29 ME/Coroner 58 58 1 August 2015

EDRS/EBRS meets EHR

Current Relevant Standards Work HL-7 Vital Records Death Reporting transmitting death record data (state to NCHS, NCHS to hospital) IHE Vital Records Death Reporting (VRDR) Integrated collection of data from EHR to EDRS Uses IHE s Remote Form for Data Capture (RFD) profile

Figuring out who in your EHR is deceased... ouch National Death Index (CDC) Application form 2-3 months review Study subject matching against CDC s national death records $$ Death Master File (SSA) 1962-present (83million) 2011 no longer includes protected state records (removed 4.2m records, 1m less per year about 40% of all annual deaths are no longer in the DMF)

CA-EDRS Vital Status Verification Service Current Status (Sept 2015) REST API beta version completed Awaiting final approval by CDPH pilot demonstration use with organizations in 2015-2016 Local process RESTful API JSON VSV Web Service CA-EDRS Repository 30min Clinical Data Repository CA-EDRS Transactional DB

Vital Records Recent News Aug 2015 Task Order awarded to California to pilot integration between EDRS and EHR IHE VRDR to enable medical certifier medical section data entry in the EHR HL-7 Vital Record Death Reporting to submit data to NCHS in near-real time Nov 2015 Next Generation Death Registration Summit (Decatur, GA) CDC/NCHS, Public Health Informatics Institute