Documenting Zika infections in pregnant women is critical given that the virus can be passed to fetuses, potentially causing severe fetal birth defects. However, capturing pregnancy status data in electronic health record systems is not an easy, straightforward task.
To help address these challenges, the Office of the National Coordinator for Health Information Technology has formed a Public Health Task Force—a joint collaboration of ONC’s Health IT Policy and Standards Committees—that is charged with providing specific recommendations to better assist in the standardization of pregnancy status data, clinical decision support in HIT systems and case management in public health settings.
In particular, the task force is using the mosquito-borne Zika virus—which can also be transmitted sexually—as the use case for its recommendations.
“We want to make sure that we can recommendations around how to capture pregnancy status, and we’ll look at the current challenges associated with it,” James Daniel, public health coordinator in ONC’s Office of Policy, told a recent meeting of the Public Health Task Force.
At the same time, Daniel noted that it’s not enough to capture pregnancy status in EHRs, but providers must also share the data with public health partners.
“I have been working recently on the Zika outbreak, so I know how important it is for us to get pregnancy data to inform public health interventions,” said Anne Fine, co-chair of the task force and an epidemiologist at the New York City Department of Health and Mental Hygiene.
Fine added that more than 325 pregnant women in New York City have tested positive for Zika. “We’re managing them and their babies. It’s a heavy load, and this has been a really urgent need for us,” she said. “Fairly early on, we and other health departments voiced our concerns about receiving improved data.”
Among the issues that the Public Health Task Force is looking to address:
- Capture pregnancy status: Identify the current challenges associated with the collection of pregnancy status when a Zika test is ordered. How could standardization help to resolve these challenges?
- Send and share pregnancy status: Identify best practices for sharing pregnancy status from the provider to both commercial labs and public health entities.
- Use of clinical decision support: Is there a need to automate the clinical decision support (CDS) process in order to identify risk and report timely information to public health? If so, what existing standards-based approaches for automating the CDS process are available as part of Zika response (i.e., Structure Data Capture, Clinical Quality Framework) can be used?
“One thing we need to address, which perhaps we don’t address as clearly in other areas of documentation, is the veracity of the information,” commented Floyd Eisenberg, MD, a task force member and president of iParsimony. “For instance, is it known and proven by a test or is it attested to by the patient, and do we rely on that? So, we have to determine what level of clarity of information we need and can deal with.”
Task force member Steve Hasley, MD, with the American College of Obstetricians and Gynecologists, made the case that a particularly difficult challenge is that patients frequently don’t know that they are pregnant. “Pregnancy status has to be determined,” according to Hasley. In response, Janet Hamilton, surveillance section administrator at the Florida Department of Health, conceded that providers might need to do a “better job maybe of doing pregnancy tests.”
Margaret Lampe, a member of the ONC task force as well as the Centers for Disease Control and Prevention’s Pregnancy and Birth Defects Task Force, added that pregnancy status is central to the CDC’s U.S. Zika Pregnancy Registry, which provides nationwide monitoring of pregnant women and infant outcomes.
“Our surveillance of Zika during pregnancy relies, of course, on pregnancy status reporting, helping us to monitor and understand infection and support a more informed public health response,” said Lampe. “Without knowing the pregnancy status of all the various reports of positive Zika tests, public health is pretty much in the dark in terms of who needs services.”
While pregnancy status is the risk factor that the public health community is focusing on with Zika, ONC’s Daniel pointed out that “we never know in public health what the particular risk factor might be with the next emerging infectious disease.” As a result, he said the task force’s ultimate recommendations should be flexible enough so that they can be applied to other public health emergencies.
Larry Wolf, co-chair of the task force and principal at Strategic Health Network, said the task force’s final recommendations will be presented in April to the Health IT Policy and Standards Committees for approval, and that the approved recommendations would then be sent to the National Coordinator.
Although dropping temperatures this fall and winter make it harder for mosquitoes to thrive and spread Zika, Wolf concluded that “the next mosquito season will be heating up, and it would be great if some of this was in place ahead of that.”
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