Essential Practices for Population-based Perinatal Data Management

1. Essential Practices for Population-based Perinatal Data Management Russell S. Kirby, PhD, MS, FACE Distinguished University Professor and Marrell Endowed Chair Department of Community and Family Health College of Public Health University of South Florida

2. Objectives • To review current practices for population-based perinatal data management • To make some systematic recommendations concerning practices that could materially improve efficiency and utility of these data • To provide these recommendations in the form of a handy top ten list • To engage the audience through the use of dry wit during the immediate post-prandial lunch period

3. Conflict of Interest Statement • Dr. Kirby has grants and contracts from the Centers for Disease Control and Prevention, the Florida Department of Health, and the March of Dimes Foundation, and is a consultant to UNICEF and AcademyHealth. • Dr. Kirby chairs the scientific advisory committee for the Nplate pregnancy exposure registry for Amgen Corp, and provides technical consultation concerning Botox and pregnancy outcomes for Allergan Corp. • Dr. Kirby is past president of the Society for Pediatric and Perinatal Epidemiologic Research and the Association of Teachers of Maternal and Child Health, serves on the executive committee of the National Birth Defects Prevention Network, and on the board of the Perinatal Foundation. He is also treasurer of the 37th Street Foundation, a family charitable foundation. He also leads the USF team in the annual March for Babies in support of the March of Dimes Foundation. • Dr. Kirby is a bluegrass and roots music fanatic, has been known to travel long distances in search of the true article, and has considered placing the following bumper sticker on his car: “Caution: this car breaks for bluegrass”. • None of these relationships have any bearing on the content of this presentation.

4. As to potential versus actual conflicts of interest, the evidence is here for all to judge.Birth defects and developmental disabilities epidemiologists have generated a new entity that must now be accorded its due:Amniotic Band Syndrome

5. The Amniotic Band – Washington DC July 26, 2004

7. Where Will They Appear Next? • The most recent appearance of the Amniotic Band was at the National Birth Defects Prevention Network, on the evening of February 26, 2013. • Who knows, maybe next on YouTube?

9. Emerson Russell Rosentreter, born March 7, 2014

10. “In theory, there is no difference between theory and practice. In practice there is.” - attributed to Yogi Berra

11. Current Practice • Vital events are processed as they are filed, but not evaluated statistically on an ongoing basis. • Repositories for different vital events are managed separately. Practices for fetal death records vary widely from state to state. • Other perinatal data are generally also managed separately.

12. Current Practice (continued) • While efforts are made to de-duplicate files, records relating to the same individual are typically not linked internally as part of routine processing. • Integrating data collected with different forms (i.e. 2003 vs 1989 national standard certificates) or coding structures (e.g. ICD-9-CM and ICD-10) can be problematical. • Record linkage, when done, is for specific projects, rather than for formal data integration in a repository.

13. Current Practice (continued) • These are generalizations, and there are some bright spots among the various states. We will look at some examples later in this presentation. • However, in general the population-based data for perinatal health are not managed in a manner conducive to maximizing their utility for maternal and child health, for perinatal epidemiology, or for that matter, for vital statistics.

14. Key Principles • Live births and fetal deaths both relate to delivery. Database structures should be complementary, and these records should be processed in a similarly timely manner. • Deliveries associated with multiple gestation pregnancies should be grouped and clearly identifiable within the database.

15. Key Principles (continued) • Deliveries to the same individual (especially mother) should be linked as part of routine vital records processing. • Transgenerational linkages (the current delivery to the delivery record for the mother) should be considered as part of routine processing as well (noting that migration as well as other factors may reduce yield). • Implementation of a National Birth Index would greatly facilitate these activities. • The birth-fetal death certificate database is the core for population-based perinatal data management.

16. Key Principles (continued) • In situations where a child cannot be located in the birth certificate database, a dummy record should be created so that health events to that child are not lost to the population-based repository. • All deaths should be linked to their respective birth certificates regardless of age or jurisidictions of occurrence or residence of either event. • Hospital discharge records should be arrayed longitudinally (even better to do this with All Payer Claims Databases whenever available), and linked with relevant vital records.

17. Key Principles (continued) • Data from various public health programs (WIC, newborn screening, lead screening, immunizations, birth defects, developmental disabilities, etc) should then be integrated with the common database described above.

18. Some Diagrams to Illustrate These Principles

19. “Follow” Infants Over Time Through Linkage of Hospital Records (from the Florida Birth Defects Registry) Inpatient Hospitalization #2 Emergency Room Visit Birth 1998 2008 2005 Outpatient Hospitalization #1 Inpatient Hospitalization #1 Salemi et al J Registry Management 2013

20. COMPONENTS OF AN IDEALSTATEWIDE PERINATAL DATABASE2. Linkages across pregnancies and generations Maternal Birth Certificate Birth Certificate of Index Child Infant Hospital Discharge or Clinical Record Maternal Hospital Discharge or Clinical Record a. Sibship studies involving risk factors from a previous pregnancy, or prospective outcomes conditional on the index pregnancy. This can also apply to pedigrees, and to educational records across family members. b. Intergenerational effects of pregnancy outcomes. c. Linkages within maternal sibships across generations. d. These approaches apply equally to hospital discharge data. R. S. Kirby, Version 4/2/07, updated 4/21/14

21. Slide courtesy of Milt Kotelchuck and Taletha Derrington

22. NC Birth Defects Monitoring Program Database NC Infant Death File NC Birth Files Local Health Dept. Prenatal Care Mom’s Medicaid Paid Claims (delivery claims) NCBDMP Central Registry Infant Medicaid Paid Claims and Enrollment Maternity Care Coordination Early Intervention Maternal WIC Participation Child Service Coordination Slide courtesy of Robert Meyer

23. Birth Defects Registry High Risk Infant Follow-Up COMPONENTS OF AN IDEALSTATEWIDE PERINATAL DATABASE1. Linkages relating to the index pregnancy Maternity/ Newborn/ Postpartum Hospital Data Death Certificates (linked to age 14) Certificates of Live Birth and Fetal Death Perinatal Risk Assessment (8, 20, 36 Wks) NICU Discharge Data Cancer Registry Cases (under age 15) [a.k.a. prenatal care data] MSAFP Data Fetal/Infant Mortality Review Child Fatality Review Clinical Genetics Database Newborn Screening Database Birth Certificate Linkage Blood Lead Screening Registry Risk Assessment Linkage Hospital/NICU Data Linkage Birth to Three IDEA Part C Death Certificate Linkage Infant Hearing Screening Registry Clinical Genetics Data Linkage Screening Data Linkage Immunization Database MSAFP Data Linkage BDS/High Risk Linkage R. S. Kirby, Version 5/30/02, updated 4/17/14

24. Hospital Discharge Survey Data Developmental Disabilities Surveillance Certificates of Live Birth (“Kirby Master File” or KMF) E/R, Trauma and Outpatient Data Death Certificates (linked to age 14) Health Status at School Entry Special Education Data Cancer Registry Cases (under age 15) Educational Outcome Data COMPONENTS OF AN IDEALSTATEWIDE PERINATAL DATABASE5. Linkages for child health, growth and development Link with Birth Defects Surveillance CSHCN Database R. S. Kirby, Version 7/7/03

26. NICU Discharge Data Hospital Discharge Data Medicaid Reports of Communicable Diseases WIC Newborn Metabolic Screening DDS and CSHCN Certificates Of Live Birth Newborn Hearing Screening Blood Lead Screening Birth Defects Surveillance Data Immunization Registry Early Intervention (Birth to 3) Child Abuse And Neglect/ Child Protective Services Source: Adams et al. Perinatal Epidemiology for Public Health Practice, 2009

28. TOP TEN LISTTEN ESSENTIAL PRACTICES FOR POPULATION-BASED PERINATAL DATA MANAGEMENT With apologies to David Letterman, appreciation for suggestions from Jason Salemi, and thanks for editorial assistance to Elizabeth Kirby. R.S. Kirby, June 2014

29. Top Ten List: Ten Essential Perinatal Data Management Practices Number 10 The Big Picture All pregnancy outcomes should be stored in a single database. This should include at minimum all live births and fetal deaths based on jurisdictional definitions. This will avoid misreporting of vital events, providing a broader perspective on perinatal outcomes.

30. Top Ten List: Ten Essential Perinatal Data Management Practices Number 10 The Big Picture (continued) Ideally, fetal cause of death information would be placed in the same structure as infant or child cause of death information. Cause of death information has limited utility, especially for fetal deaths. Consideration should be given to the use of the CODAC classification scheme, creating an autopsy registry, and incorporating relevant data into the perinatal database.

32. Top Ten List: Ten Essential Perinatal Data Management Practices Number 9 Link Now, Use Mostly Data from vital records (and other public health databases) should be accessible to staff who have a legitimate reason to use those records. Timely processing of these records is essential. Infant death certificates should be linked to their respective birth certificates within a few working days of filing, and then made accessible to FIMR coordinators and others whose work requires this information.

33. Top Ten List: Ten Essential Perinatal Data Management Practices Number 9 (continued) Population Health Informatics Are perinatal data managed in information systems, or based on scientific and business principles of informatics?

34. Top Ten List: Ten Essential Perinatal Data Management Practices Number 8 What’s in a Denominator? Birth cohort infant mortality files should be created and made available routinely, not several years later (Hint to NCHS). Even where not possible nationally, state agencies should generate these files on an annual basis shortly after closing the prior calendar year out.

35. Top Ten List: Ten Essential Perinatal Data Management Practices Number 7 To the Wherever Born All deaths should be linked to their respective birth certificates wherever possible (note that non-US born decedents may be problematical). The state where the death occurred or where the decedent resided should obtain the relevant birth certificate for its database as well.

36. Top Ten List: Ten Essential Perinatal Data Management Practices Number 6 Keep Clustered Data Together Pregnancy outcomes should be routinely linked by mother: • Link multiple births within a gestation • Link pregnancy outcomes to the same woman • If more ambitious, link pregnancy outcomes to the same father

37. Top Ten List: Ten Essential Perinatal Data Management Practices Number 5 The Centerpiece Use the birth certificate as the base file for maternal and child health databases. Add records to represent children born elsewhere who appear in other MCH databases. Link newborn metabolic, hearing, CCHD screening records to vital records at the point of creation. Use the resultant data to promote quality improvement in these public health programs.

38. Top Ten List: Ten Essential Perinatal Data Management Practices Number 4 The Circle of Life Transgenerational record linkage will become essential to implementation of the life course framework in maternal and child health. Develop plans now to conduct these linkages on an ongoing basis.

39. Top Ten List: Ten Essential Perinatal Data Management Practices Number 3 A Wide Degree of Longitude? The pregnancy outcome file should be routinely linked to hospital discharges both for maternal and infant hospitalizations (the latter should include any stays prior to discharge to home). If feasible, the health care utilization file should then be arrayed longitudinally for each infant. Today, hospital discharge, outpatient surgery, ER; tomorrow, perhaps all-payer claims data (APCD).

40. Top Ten List: Ten Essential Perinatal Data Management Practices Number 3 (continued) A Wide Degree of Longitude? And while we’re at it, geocode all public health records to the smallest feasible geographic units. Ideally, address-based data should geocode to longitude and latitude coordinates, while all other data should geocode to census tract or block group wherever possible.

41. Top Ten List: Ten Essential Perinatal Data Management Practices Number 2 I Love It When a Plan Comes Together Other relevant databases should also be linked, maintaining reference to identifiers stored in the base file of birth certificate and place holder records. It is not necessary to call this file the KMF or ‘Kirby Master File’.

42. Top Ten List: Ten Essential Perinatal Data Management Practices Number 2 (continued) I Love It When a Plan Comes Together Most importantly, the resultant data should be made available to evaluate programs, identify public health concerns, and promote quality improvement activities.

43. Top Ten List: Ten Essential Perinatal Data Management Practices Number 1 The Electronic Health Record is Your Friend, Meaningful Use is Your Ally Wherever possible, clinical information in public health databases should be obtained directly from clinical sources. Never rely on maternal self-report for information concerning health services, prior medical history or health conditions/diagnoses, except in representative sample surveys. In the future, many public health databases will directly access these data through electronic interfaces.

44. Top Ten List: Ten Essential Perinatal Data Management Practices And Finally The Electronic Health Record is Your Friend Nothing in this list of data management practices is meant in any way to imply that state and federal laws, privacy and confidentiality should ever be violated. However, do not use these issues as excuses for failing to implement these practices, as all of them are well within the purview of every state health agency’s organic act.

46. “If you always do what you always did, you always get what you always got.” - Anonymous (quoted in J Epidemiol Commun Health, 2004;58:1034)

47. Contact Information Russell S. Kirby, PhD, MS, FACE Department of Community and Family Health College of Public Health, University of South Florida Email: rkirby@health.usf.edu Telephone: 813-396-2347