In Arkansas, every 5 hours, a baby is born with a birth defect. Collecting, analyzing, and tracking data on birth defects, which has been a state law since 1985, allows policymakers, scientists, and healthcare professionals to understand the trends, causes, and impacts of birth defects on Arkansans and modify their services to better serve those in need. The Arkansas Reproductive Health Monitoring System (ARHMS) is a public health program that collects and tracks birth defect data in the state. While ARHMS consists of a small team, they play a critical role in public health research and the type of care and treatment children with birth defects receive.
Birth defects data collection is a state law.
ARHMS was established in 1980 and is one of the oldest active birth defect surveillance systems in the United States. In February 1985, the State of Arkansas passed a legislative act signed by former president Bill Clinton (then governor of Arkansas), which established funding for ARHMS and required hospitals across the state to begin tracking birth defect data.
Initially, ARHMS monitored around a quarter of all births in the state for selected congenital defects. In 1995, after an agreement with the Centers for Disease Control and Prevention (CDC), ARHMS expanded its services and began surveying all births in the state for the presence of birth defects. By 2008, ARHMS was fully funded. Now, it provides researchers with data and information needed to compete and secure funding for birth defect research studies and treatment initiatives.
The data collection process starts with recruitment.
Cassandra Garman, a certified health information specialist (HIS) and supervisor for ARHMS, manages the data collection process. Because statewide surveillance and tracking are required by state law, Mrs. Garman must help oversee the data collection process to ensure ARHMS receives the information it needs to report to the CDC.
While some hospitals automatically send records to ARHMS when requested, ARHMS does have to meet with some hospitals to ensure record access and proper information is available. “ARHMS accesses records remotely and by site visit to collect data from patient charts regarding birth defects,” Mrs. Garman said. “For CDC-funded projects, we review the charts to identify eligible data, extract the information we require, and verify the data before submitting the de-identified data to the CDC’s national database.”
ARHMS consists of a small but mighty team.
The ARHMS team is made up of abstractors, health information specialists, epidemiologists, and a medical director who oversees and guides the team. Dr. Xiaoyi (Joy) Shan, an epidemiologist who has worked with ARHMS for the last seven years, provides the team with feedback and support, conducts data analysis, and processes data requests made by the public and health professionals.
“Data collection is not a simple process,” Dr. Shan said. “Because medical records contain so much information, our abstractors have to thoroughly read doctors’ notes to ensure that we have identified the right cases and are collecting the right data.”
ARHMS responds to researchers’ inquiries related to birth defects in the state. Dr. Shan also helps her team promote ARHMS resources. “I like to let people know about our program and the wonderful resources we provide,” said Dr. Shan. “We have a process for those interested in utilizing the data. Certain documents, including Institutional Review Board approval, may be needed depending on the types of data requested. We follow state and federal policies on confidentiality. These guidelines and request forms are located on the ARHMS webpage. We encourage collaboration.”
Collaboration leads to increased awareness and funding initiatives.
The Arkansas Center for Excellence in Birth Defects Research and Prevention (Arkansas Center) at the University of Arkansas for Medical Sciences (UAMS) is a long-standing collaborator with the registry. The Center has been carrying out many national studies through competitive federal grants. ARHMS has played a key role in supporting many local and national research projects over the years.
Through continued support and collaboration, ARHMS and the Arkansas Center continue to make a difference in the lives of children and families affected by birth defects through research and insightful reporting.
Congenital heart disease is the most common birth defect in Arkansas.
ARHMS collects data on major structural and chromosomal defects. On average, about 1,400 cases with selected birth defects are entered into the registry’s database every year. “That means around 3.6% of all births in Arkansas involve a child with a birth defect,” Dr. Shan explained. “Of all those birth defect cases we collect, over 40% are congenital heart defects.”
Nationally, the data on birth defects might look different than what ARHMS collects in Arkansas. “Each state might collect something different,” Mrs. Garman added. “Some might collect more of one type of defect, some might collect less. In addition, there are active and passive registries that determine the way that that data are collected.”
ARHMS uses an active surveillance method. Active registries have dedicated staff to review and ascertain cases and ensure the accuracy and quality of the information collected. ARHMS health information specialist staff actively survey and review hospital records for the most relevant data in birth defects. Because ARHMS is an active registry, its data is superior to that obtained from a passive surveillance approach.
ARHMS benefits providers, patients, and policymakers.
In addition to assisting scientists and other specialists with conducting valuable healthcare research, ARHMS aids providers in tailoring their practice to the current trends and information on birth defects. “If they see that a specific congenital heart defect is more prevalent in a particular region of the state in which they practice, they can use that information to recruit more support for their patients and learn which services are available in these areas to serve the patient better,” Dr. Shan said.
Enhanced provider awareness and practice transformation then leads to additional support for patients in the community. “With more support services, patients can turn to an institution that is specific to their child’s needs,” Dr. Shan explained. “That institution uses our data to inform their practice and help increase the child’s quality of life.”
Policymakers can use the data ARHMS collects to provide funding for more resources and programs at the state level. “You need solid numbers to provide to policymakers so that they understand the scope of birth defects in Arkansas,” Dr. Shan said. “When they understand the scope and the impact these defects have on families, they can then allocate funding to programs that support the research and prevention of birth defects.”
What lies ahead for ARHMS?
In the future, Dr. Shan hopes that ARHMS expands into a resource for patients to use as well. With the right resources and support in the future, referral services may be built into the function of the registry.
Dr. Shan said the process to request data from ARHMS is simple: “Go to our website. Scroll down to the ‘Submit Data Request’ button and fill out the survey. That will allow you to tell us the specific data we can provide you.”