Historically, the Office of Maternal, Child and Family Health received a form with the birthing outcomes from all licensed birthing facilities. These forms were used by our Program for data gathering and to trigger a letter to the family asking if we could be of assistance in obtaining medical services for their child. While this has worked, we wanted a more detailed record review. This enables us to collect consistent and accurate data regarding birth defects in a timely manner.

In order to achieve this objective, our program moved to an active record review process in 2003. The CARESS program now has two nurses who visit each birthing facility to record the data on any child born with a congenital abnormality.  Several West Virginia residents give birth in bordering state birthing facilities.  We are also partnering with those facilities to receive their information. The state is divided into two sections, the Northern Territory and Southern Territory. These sites are visited monthly to collect relevant information on birth defects. This will assist in studying the rates and trends of birth defects in West Virginia to determine possible causes and prevention methods.

A partnership with the birthing hospitals enables the nurses to review the charts in a timely manner to obtain necessary information. Handling patient information of such a confidential nature is a concern for everyone and we have developed extensive procedures to safeguard patient identifiable information. All staff accessing this material has signed confidentiality oaths within the Department of Health and Human Resources. Any parent or legal guardian who wishes to have their child's identifying information removed from the data system for religious reasons may contact us to complete this process.

No private or confidential data collected, maintained or used during the course of the reviews would be disclosed. This process is supported with the Health Insurance Portability and Accountability Act of 1996 (HIPAA, Public Law 104-191). The following applies to CARESS staff:

HIPPA 164.512 “A covered entity may disclose protected health information for the public health activities and purposes described in this paragraph {164.512(b)91)} to:

1) a public health authority that is authorized by law to collect or receive such information for the purpose of preventing or controlling disease, injury or disability, including but not limited to, the reporting of disease, injury, vital events such as birth or death and the conduct of public health surveillance, public health investigations, and public health interventions…”

Data collected from active case reviews will be used to accomplish the following:

• Coordinate health services

• Analyze the rates and trends of birth defects

• Review data and risk factors for linkages/causal relationships

• Evaluate timeliness/effectiveness of case reviews

• Show strengths/weaknesses in data collection processes

• Summarize/distribute findings in annual reports