PH+Reporting+User+Story+-+Birth+Defects+Reporting

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Contact Info:
Tiffany Colarusso, MD (tcolarusso@cdc.gov, phone: 404.498.3805) -- Medical Officer, Birth Defects Surveillance Team

Date Received:
11/30/2011

Of the more than 4 million infants born each year in the United States, approximately 120,000 have birth defects. Major birth defects are conditions that: 1) result from a malformation, deformation, or disruption in one or more parts of the body; 2) are present at birth; and 3) have serious, adverse effects on the affected person’s health, development, or functioning. Birth defects are a leading cause of morbidity and infant death accounting for more than 20% of infant deaths.1
 * 1.1 Introduction**

Surveillance of birth defects in a population Is vital for quantifying the public health impact of birth defects, monitoring trends, forming the basis for etiologic and clinical studies, evaluating prevention strategies and interventions, planning for services, and making informed policy decisions. Establishment of a surveillance system is therefore dependent on the core purposes, such as establishing a system designed to track exposures to teratogens or evaluate an intervention like folic acid fortification. This in turn will shape the case definition, ascertainment methodology, stakeholders/partnership development, data analysis and utilization, as well as evaluation of these activities.

In the United States, more than 40 states have, or are planning, population based birth defect surveillance programs. The Centers for Disease Control and Prevention (CDC) supports many of these state surveillance programs. In addition, the National Birth Defects Prevention Network (NBDPN) was created in 1997 to establish and maintain a national network of state and population-based programs for birth defects surveillance and research2. NBDPN assesses the impact of birth defects upon children, families, and health care; identifies factors that can be used to develop primary prevention strategies; and assists families and their providers in secondary disabilities prevention2. In 2004, NBDPN published the Guidelines for Conducting Birth Defects Surveillance3 (http://www.nbdpn.org/birth_defects_surveillance_gui.php) to improve data quality and utility, and encourage and promote the use of birth defects surveillance data for the purposes of linking affected children with services. NBDPN also has established a workgroup to address issues regarding utilization of electronic health record systems (EHR-S) for birth defects surveillance.

Case ascertainment of birth defects ranges along a continuum from passive to active methodology. Birth defect surveillance programs vary in objectives, the age at which children are included, the types of birth outcomes included (live births, still births, pregnancy terminations), the geographic scope of their activities, and case ascertainment methods. They also vary in the utilization of EHR-S for public health activities. In some systems, birth defects cases are reported from one or more ascertainment sources, while in others, staff conduct case-finding, review, and abstract information directly at the source(s). Other programs combine aspects of both active and passive systems, such as receiving case reports from sources and then reviewing a subset of them at the reporting site. In all of these systems, case ascertainment is improved when multiple sources are used for case identification and when clinical review of the cases is completed.

The goal of birth defects surveillance programs is to collect quality data for use in improving the public’s health. While birth defects surveillance programs provide important data on the occurrence of defects among newborns and infants in the U.S., there is little longitudinal tracking data on children, adolescents and adults with birth defects.
 * 1.2 User Story Narrative**
 * 1.2.1 Goal**

EHR-S could improve the capacity of state and regional programs to: 1) conduct birth defects surveillance and follow cases longitudinally across the lifespan; 2) conduct epidemiologic and outcomes research through analysis of EHR data; and 3) improve the delivery of health services for affected individuals. EHR-S with birth defects functional requirements could enable a birth defects surveillance system to collect data in a more cost effective and efficient manner. For example, a surveillance system may currently receive information from reporting sources in varying formats (e.g., paper, scanned, electronic). In addition, reporting facilities may be required to send the same information to multiple state or local agencies or other entities, increasing the likelihood of data errors or delays. Surveillance staff have to process the received reports and standardize the format. Paper forms need to be data entered. Duplicates need to be identified. Variability will exist in the information provided, as well as the quality of the data. EHR-S would provide the needed information in a consistent and more efficient and timely manner.

Thus, birth defects-specific EHR-S standards would enable public health surveillance to streamline existing processes and procedures for case ascertainment and data collection, and improve cost-effectiveness of surveillance and timeliness of data reporting. Furthermore, the use of standard birth defect-specific EHR-S conformance criteria could improve the comparability and feasibility of pooling of data among states, increase epidemiologic capacity, and guide primary and secondary prevention activities. The use of EHR-S and data standards would improve the quantity and quality of data collected, thereby enhancing the national public health capacity to monitor, understand, and prevent birth defects. Leveraging EHR for public health will be bi-directional communication, with public health eventually being able to deliver care/advice to the patient/provider directly.

All birth defects surveillance programs include reporting requirements for live birth infants with birth defects; some programs also have authority to collect data on all pregnancy outcomes Regardless of the surveillance methods used (i.e., use active, passive, or some combination of reporting), the main data event trigger is the identification of a birth defect.
 * 1.2.2 Description of Data Reporting Events, Actors and Triggers**

Key sources for reporting and collection of birth defects data include hospitals, physicians, midwives, laboratories, clinics (such as genetic and other specialty clinics), and other health care providers, as well as vital records (birth, death, fetal death) and administrative datasets (such as hospital discharge and Medicaid data) and other state programs (such as newborn screening, children with special health care needs, early intervention). Because birth defects programs vary in their use of data sources, there is a need to more easily share information across systems in a consistent manner.

Key reporting events, actors, and triggers in birth defect surveillance systems might include:
 * Identification of a birth defect by laboratory testing, diagnostic testing, or physical exam.
 * Receipt of a report of a birth defect, or abstraction of information about a defect diagnosis by a surveillance program, or identification of a defect from administrative data; a single report can come from multiple sources.
 * Follow-up of a defect report with the reporting entity for additional needed information, such as or diagnostic test results clarification of the diagnosis.
 * Linkage of a child with a birth defect to needed services.
 * Tracking information about a child’s birth defect and health status across the lifespan.

Data elements recommended by NBDPN3 for inclusion by birth defects surveillance programs include: demographics, pregnancy and outcome information, defect diagnostic information, and contact information if follow-up is an activity of the program. Many programs collect additional information to meet their objectives. NBDPN is in the process of developing standards for data quality and utility of birth defects surveillance systems to facilitate data sharing and reporting.
 * 1.2.3 Data**

//Recommended Data Variables3//
 * **Data Variable** || **Descriptive Epidemiology and Monitoring** || **Research** || **Service/ Planning** || **Linkage** ||
 * Infant ||
 * Unique ID || X || X || X || X ||
 * Date of Pregnancy Outcome || X || X || X || X ||
 * Sex || X || X || X || X ||
 * Infant Name (First, Middle, Last, Suffix) || X || X || X || X ||
 * Source of Report || X || X || X || X ||
 * Medical Record Number(s) || X || X || X || X ||
 * Vital Record Certificate Number || X ||
 * Place of Pregnancy Outcome || X || X || X || X ||
 * Pregnancy Outcome || X || X || X || X ||
 * Birth Weight || X || X || X || X ||
 * Plurality || X || X || X || X ||
 * Gestational Age || X || X || X || X ||
 * Diagnosis Code || X || X || X || X ||
 * Text Description of Birth Defect || X || X || X ||  ||
 * Date of Death || X || X || X || X ||
 * Birth Length || X || X ||  ||   ||
 * Apgar Score || X || X ||  ||   ||
 * Birth Order || X || X || X ||  ||
 * Cytogenetic Analyses Performed || X || X || X ||  ||
 * Diagnostic Tests and Procedures Performed || X || X || X ||  ||
 * Autopsy Performed || X || X || X ||  ||
 * Physicians of Record || X || X ||  ||
 * Contact Information ||
 * Name of Responsible Party || X ||  ||
 * Address of Responsible Party || X ||  ||
 * Telephone Number of Responsible Party || X ||  ||
 * Mother ||
 * Mother’s Date of Birth || X || X || X || X ||
 * Mother’s Race || X || X ||  ||   ||
 * Mother’s Ethnicity || X ||  ||   ||   ||
 * Mother’s Name (First, Middle, Last, Suffix) || X || X || X || X ||
 * Mother’s Residence at time of Pregnancy Outcome (Full Address) || X || X ||  ||   ||
 * Date of Last Menstrual Period (LMP) || X || X ||  ||   ||
 * Date of Ultrasound || X || X ||  ||   ||
 * Gestational Age at Ultrasound || X || X ||  ||   ||
 * Mother’s Medical Record Number(s) || X || X ||  || X ||
 * Prenatal Diagnosis || X || X ||  ||   ||
 * Census Tract of Maternal Residence at Pregnancy Outcome || X || X ||  || X ||
 * Mother’s Telephone Number || X || X ||  ||
 * Mother’s Education || X || X ||  ||   ||
 * Prior Pregnancy History || X || X ||  || X ||
 * Prenatal Care || X || X ||  ||   ||
 * Father ||
 * Father’s Date of Birth || X || X ||  || X ||
 * Father’s Name || X || X ||  ||
 * Father’s Education || X || X ||  ||   ||
 * Father’s Race || X || X ||  ||   ||
 * Father’s Ethnicity || X || X ||  ||   ||

As with other areas of public health, informatics technology is becoming part of the birth defects surveillance process, but the transition is variable and challenging. Some birth defects surveillance programs are currently using EHR-S to obtain case information. However, data sources for case finding (e.g. hospitals) use different levels of EHR-S and electronic medical records – they can be fully electronic (rare), partial (e.g. paper notes, electronic labs), or have scanned paper records which are read electronically. Birth defects surveillance programs are beginning to obtain alternate means of collecting data, including remote access to medical records and utilization of Health Information Exchanges. Thus, programs must piece together the unique characteristics of each data source and setting.
 * 1.2.4 Other information**

As health care systems move towards EHR-S, birth defect surveillance programs recognize the potential benefits of standardized electronic systems. CDC’s National Center on Birth Defects and Developmental Disabilities (NCBDDD) is exploring avenues to leverage EHR-S for public health activities related to birth defects. Collaborations with other chronic disease, surveillance, and informatics technology programs are being developed, both within and external to CDC. For example, representatives from NCBDDD and the NBDPN are working with the Public Health Data Standards Consortium to develop a birth defect functional profile. Additionally, NBDPN has established an EHR work group for ongoing communication and dialogue about how birth defects programs can incorporate EHR into their ongoing activities.
 * 1.3 Stakeholder Commitment**

1. Martin JA, Kung HC, Mathews TJ, et al. Annual summary of vital statistics: 2006. Pediatrics 2008;121:788-801. 2. The National Birth Defects Prevention Network, http://www.nbdpn.org/ last accessed Nov. 18, 2011. 3. National Birth Defects Prevention Network (NBDPN). Guidelines for Conducting Birth Defects Surveillance. Sever LE, ed. Atlanta, GA: National Birth Defects Prevention Network, Inc., June 2004.
 * References**:

Supporting Files:

 * **Description** || **File** ||
 * This document contains the initial draft user story submission. || [[file:Initial Draft Submission - Birth Defects - November 30 2011.docx]] ||  ||

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