Birth Certificate and Hospital Discharge Linkage Survey: Results from 52 jurisdictions Shin Y. Kim 1, Sukhjeet Ahuja 2, Caroline Stampfel 3, Dhelia Williamson 1 1 CDC, Division of Reproductive Health, 2 NAPHSIS, 3 AMCHP NAPHSIS/NCHS Meeting June 02, 2013 Phoenix, AZ National Center for Chronic Disease Prevention and Health Promotion Division of Reproductive Health

Importance of Data Linkage  Inform accuracy of reporting, areas for improvement, and information on strength and limitation of sources  Data used for surveillance and research of pregnancy conditions, risk behavior, and neonatal outcomes  Linking provides a more comprehensive data on:  Sociodemographic characteristics  Prenatal care  Maternal and infant morbidity

Why conduct this survey?  To date it is not clear:  How many states conduct these linkages  The quality of these linkages  The limitations to conducting these linkages.  Inform us regarding the need to develop more systematized linkage system, the resources needed to create or expand current linkages, and the capacity and interests states have to maintain such linkages.

Objectives  Determine how many jurisdictions currently links birth certificate and hospital discharge data.  Identify the process the states use to do the linkage, quality assessment measures taken, and resources needed.  Describe barriers to linkage and limitations states have in conducting linkages.  Determine the interest states have in creating, maintaining, and utilizing such a linkage.

Methods  NAPHSIS and AMCHP worked collaboratively with CDC to design the survey including cognitive and pilot testing the questions  NAPHSIS and AMCHP identified all survey respondents (vital registrars and State Systems Development Intiative coordinators) in 52 jurisdictions (50 states, New York City, and Washington D.C.)  The minute survey was administered via Survey Monkey (previously known as Zoomerang)  NAPHSIS and AMCHP followed-up with non-respondents  NAPHSIS, AMCHP and CDC collaborated in analyzing the data and disseminating results

RESULTS

Jurisdictions that have linked in the last 4 years DC RI NYC Both VR Only SSDI Only No Linkage

Hospital discharge records linked with birth records Type of Hospital Recordsn (%) Infant Only3 (11) Maternal Only3 (11) Both Infant and Maternal21 (78)

How often are linked files updated?

Is your linkage automated? Automatedn (%) Yes14 (52) No13 (48)  If yes, 70-99% of records can be linked electronically without manual intervention  If no, reasons included:  Lack of software  Data files in different format  Lack of experience  Lack of financial resources

Quality of birth-hospital record linkage evaluated? Quality evaluatedn (%) Yes16 (59) No11 (41)

How does your state use your linkage?

Interested in collaborating to share linkage processes, including lessons learned and codes? Quality evaluatedn (%) Yes24 (89) Not sure3 (11)  If not sure, reasons included:  Time commitment  Cost  Confidentiality of data  Data not linked in health department

What prevents your states from using birth- hospital record linked dataset the way you would like to use it?

What prevents birth-hospital linkages from occurring?

Summary  All Vital Registrars and 50 SSDI Coordinators responded to the survey.  52% of jurisdictions link birth records and hospital discharge data  Nearly 80% link both maternal and infant records  Linkages are primarily used for surveillance and special studies and least used for policy evaluations  Barriers to linking included lack of staff time, cost, inability to obtain access to hospital discharge data, and not having an access to a linkage variable.

Conclusions  Results from this survey provide valuable information about:  Number of states that link  Data sources that are linked  How the data are used  Barriers to using the data and linking the data sources  Resources needed to begin, maintain, and expand linkages.  Reporting differences between vital registrars and SSDI coordinators should be explored  Findings also suggest that future efforts should include assessing the quality of the linkage and validity of selected variables.

QUESTIONS?

Questions? Thank You For more information please contact: Shin Y. Kim, MPH 4770 Buford Hwy NE MS K-23 Atlanta, GA 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 Chronic Disease Prevention and Health Promotion Division of Reproductive Health