Congenital syphilis (CS), a preventable and potentially devastating disease transmitted during pregnancy, is increasing at an alarming rate in California and nationwide. If a pregnant mother diagnosed with syphilis does not receive prompt treatment, the impact of CS on the baby can be severe, ranging from prematurity and brain and nerve problems to stillbirth or death. There was a seven-fold increase in CS cases nationwide between 2012 and 2021. In 2018, the state case rate of 68.2 per 100,000 live births in California was already more than double that of the United States.
In 2018, the California Department of Public Health launched a statewide effort to eliminate CS in 3 years. However, the program struggled, due to a lack of investment in financing the public health system over the years and a slowly eroding health infrastructure. Those challenges were further exacerbated by limited access to care during the COVID-19 pandemic. But if nothing else, the pandemic has illuminated the consequences of our neglect on public health, as well as the opportunities to exploit new technologies and innovations.
In the largest geographic county in the United States, San Bernardino County in California, we have a ray of hope. In 2019, the county had twice the incidence rate of California overall and more than four times the incidence rate in the United States. Here we look at a case study on how using health information exchange data proactively and in depth can help counties prevent CS and create a safe and prosperous environment for pregnant mothers and their babies, especially women with obstacles to access to regular care.
Obstacles to the care of vulnerable pregnant women
San Bernardino County has seen a 366% increase in pregnant patients exposed to syphilis and an 891% increase in CS since 2013. In a landscape of increasing CS cases that are negative nationwide and worse in California , this county is an epicenter.
Coordinating care for pregnant patients who are vulnerable due to socioeconomic problems and risk factors can be difficult. In San Bernardino County, median income lags locally and nationally, and 43% of households speak a language other than English as their primary language. Pregnant women diagnosed with syphilis are likely to encounter significant barriers to accessing treatment. Early maternal screening and treatment can prevent CS, but facilitating timely communication of information between public health agencies and healthcare professionals is not easy.
Many pregnant patients become unreachable; delivery in local delivery hospitals may be the only opportunity for medical assistance and intervention. Others may be diagnosed at the end of pregnancy and neonatal health interventions are needed immediately after delivery. To further complicate health care coordination, the San Bernardino County Public Health Department (SBCDPH) was often not notified of deliveries until days after patients were discharged from the hospital, creating missed opportunities for early intervention while mothers and babies they were being treated.
Put the data to work
In 2021, SBCDPH implemented an innovative pilot program to fill gaps in CS care and connect with a patient group of pregnant women diagnosed or exposed to syphilis. The key was access to admission, discharge and hospital transfer (ADT) notifications, which SBCDPH was able to receive in real time from Manifest MedEx, California’s largest non-profit health information network. These data were crucial to enable early intervention.
Registered nursing case managers received notifications when patients were hospitalized for labor and delivery, which allowed the Communicable Disease Section team to coordinate testing and treatment with the maternal and hospital care teams. the newborn before discharge. The data from Manifest MedEx also eliminated the need for RN case managers to call local hospitals to track deliveries, saving an average of 30 to 60 minutes per case. Case managers viewed longitudinal patient records in Manifest MedEx, including hospital data such as labs, progress notes, and any appropriate medications and treatments to coordinate care and provide supporting documentation as required by the California Section on Communicable Diseases Reportable Disease Information Exchange.
The data available through Manifest MedEx allowed case managers to take preventative action much faster than traditional methods, such as fax or email. As a result, they were able to better control the CS results and save valuable time. The county was able to reduce CS cases in 2021 by 20% from the 2020 peak thanks to this effort. The department is currently looking to expand the pilot project to other communicable diseases, including patients with HIV and latent tuberculosis.
The pilot program shows how sharing health data can change the course of a health crisis. Importantly, this solution is neither exclusive to California nor CS – all counties and states should seize the opportunity to leverage the exchange of health information and ensure accurate and actionable data sharing to support health goals. public, address health inequalities and improve health outcomes.
Josh Dugas is Director of Public Health for San Bernardino County and has been an SBCDPH veteran for 20 years. Mimi Hall, MPH, recently moved from a career in local public health departments to driving innovation in public health with California’s largest health data network, Manifest MedEx, a nonprofit that provides medical records for nearly 32 million residents.