Data sharing can reverse a health crisis

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 timely treatment, the effects of CS on the baby can be severe, ranging from prematurity and brain and nerve problems to stillbirth or death. There was a sevenfold increase in CS cases nationally between 2012 and 2021. In 2018, the statewide case rate of 68.2 per 100,000 live births in California was already more than twice that of the US .

In 2018, the California Department of Public Health launched a statewide effort to eliminate CS for 3 years. However, the program has struggled, faced with a lack of investment in funding the public health system over the years and a slowly crumbling health infrastructure. These 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 of public health, as well as the opportunities to harness new technologies and innovations.

In the largest geographic county in the US, San Bernardino County in California, we have a ray of hope. In 2019, the county had double the incidence rate of California as a whole and more than four times the incidence rate of the US. Here, we examine a case study of how using health information exchange data in a proactive and insightful way can help counties prevent CS and create safe and thriving environments for pregnant mothers and their babies, especially women with barriers to accessing regular care .

Barriers to care among 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 rising CS cases that are bad nationally and worse in California, this county is the epicenter.

Coordinating care for pregnant patients who are vulnerable due to socioeconomic issues and risk factors can be challenging. In San Bernardino County, median income lags locally and statewide, and 43% of households speak a language other than English as their primary language. Pregnant women diagnosed with syphilis are likely to experience significant barriers to accessing care. Early maternal screening and treatment can prevent CS, but facilitating timely communication of information between public health agencies and health care providers is not easy.

Many pregnant patients become unavailable; giving birth in local maternity hospitals may be the only option for medical care and intervention. Others may be diagnosed late in pregnancy and require neonatal health interventions immediately after birth. Further complicating health care coordination, the San Bernardino County Department of Public Health (SBCDPH) was often not notified of births until days after patients were discharged from the hospital, creating missed opportunities for early intervention while mothers and babies were in care.

Putting data to work

In 2021, SBCDPH implemented an innovative pilot program to address gaps in CS care and connect with a patient cohort of pregnant women diagnosed with or exposed to syphilis. The key was access to hospital admission, discharge and transfer (ADT) notifications, which SBCDPH was able to obtain in real time from Manifest MedEx, California’s largest nonprofit health information network. This data was key to enabling early intervention.

Registered nurse managers were notified when patients were admitted for delivery, allowing the infectious disease unit team to coordinate testing and treatment with hospital maternal and newborn care teams prior to discharge. Manifest MedEx data also eliminated the need for RN case managers to call local hospitals to track supplies, saving an average of 30 to 60 minutes per case. Case managers reviewed 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 Communicable Disease Division of the California Exchange of information on reported diseases.

The data available through Manifest MedEx allowed case managers to take proactive action much faster than with traditional methods such as fax or email. As a result, they were able to better control CS results and save valuable time. Thanks to these efforts, the county was able to reduce CS cases in 2021 by 20% compared to the peak in 2020. The department is currently looking to expand the pilot project to additional communicable diseases, including patients with HIV and latent TB.

The pilot program shows how sharing health data can change the course of a health care crisis. Importantly, this decision is not unique to either California or CS—all counties and states should take advantage of the opportunity to increase health information sharing and ensure we share accurate, actionable data to support public health goals , addressing health inequities and improving health outcomes.

Josh Dugas is the Director of Public Health for San Bernardino County and a 20-year veteran of the SBCDPH. Mimi Hall, MPH, recently moved from a career in local public health departments to leading public health innovation with California’s largest health data network, Manifest MedEx, a nonprofit organization providing health records for nearly 32 million residents.

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