While winter is coming and Zika-bearing mosquitos may die off in some areas of the country, public health officials aren’t pausing their efforts to fight the spread of the Zika virus.
As the number of cases continues to rise, they are finding healthcare information technology, such as electronic health records, to be an indispensable tool for helping to track, diagnose and treat those infected with the illness.
The stakes are high for pregnant women because the virus can be passed to fetuses, potentially causing birth defects such as microcephaly—resulting in smaller brains that have not properly developed.
Spread through the bite of an infected mosquito and sexual transmission, Zika has become a global epidemic, with cases documented in nearly 60 countries worldwide and growing. As of late October, more than 950 pregnant women in the continental U.S. have been identified with laboratory evidence of possible Zika virus infection. In the U.S. territories located outside of the mainland, another 2,000 Zika cases have been identified.
The Centers for Disease Control and Prevention’s Emergency Operations Center (EOC) is actively monitoring and coordinating the federal government’s response to the outbreak. Documenting Zika infection is vital to tracking and containing the spread of the virus, and CDC officials see EHR systems as critical tools in managing the public health crisis.
Margaret Honein, chief of the CDC’s Birth Defects Branch and co-lead of its Pregnancy and Birth Defects Task Force, contends that EHRs are extremely valuable in pinpointing travel to areas with populations infected with the virus. As a result, she believes EHR documentation plays a central role in accurately identifying Zika infection in pregnant women.
“At every prenatal visit, healthcare providers should be asking pregnant women about travel to areas with active Zika virus infection or any sexual partners who may have travelled to an area with active Zika virus transmission—and then, for those who have exposure, testing,” says Honein. “EHR triggers could be used as ways to help providers figure out who needs to be prompted to ask for more information.”
She adds that testing must be done in a timely manner and that “it’s very important to identify not only the symptomatic cases of Zika virus disease but also asymptomatic infections in pregnant women, because there is a devastating effect that this virus can have on the fetus.”
So far, 23 live-born infants with birth defects and five pregnancy losses with birth defects have been reported in the U.S. and District of Columbia.
According to Laurie Garrett, senior fellow for global health at the Council on Foreign Relations, one of the challenges with combating the Zika outbreak is that “we don’t have great diagnostics, and so we have to be able to scour for symptoms,” adding that there is a need for “some kind of record keeping that keeps track of mobile populations.”
That’s where EHRs come into play, by helping public health officials and providers identify patients who might be at risk of infection, contends Garrett.
“We want to alert clinicians to risk factors and have the EHR systems say, ‘Oh, by the way, with this constellation of signs and symptoms you put into the record, you want to think about whether or not your patient could have Zika,’ ” says Andrew Gettinger, MD, the ONC’s chief medical information officer and executive director of the Office of Clinical Quality and Safety.
Nonetheless, Garrett asserts that most people with the disease are asymptomatic, and even those with symptoms probably would not normally go to the doctor and get diagnosed—that’s because the symptoms can be mistaken for the flu. Thus, to differentiate more common ailments from Zika cases, collecting and sharing travel information in EHRs is critical for diagnosing and tracking the disease.
“We desperately need to be able to track the outcomes of all these infections, and keep in mind we’ve had thousands of individuals exposed to Zika living in the United States,” she says, noting that most of these people have acquired the virus during international travel. “We need to track these people and know what happens to them.”
Richard Loomis, MD, vice president and chief medical officer for EHR vendor Practice Fusion, argues that pregnancy status is important to inform and educate patients about how Zika poses potential risks to a developing fetus. “Documenting travel not only helps a provider evaluate exposure risk to the patient in front of them, but also helps researchers better understand the spread and epidemiology of the disease,” says Loomis. “Since Zika can also be sexually transmitted, it’s also beneficial to document a patient’s related history in the patient chart.”
Loomis believes population health analytics that inform clinical decision support tools can enable providers to help identify high-risk patients. For example, he says EHRs can be analyzed to identify potential high-risk markers for travel exposure such as prescriptions, recent vaccinations and other patient characteristics.
Sanjeev Tandon, MD, lead for the CDC’s EHR Meaningful Use and Public Health Project and the CDC’s Zika Response Health IT Team, agrees that pregnancy status and travel history are the two critical pieces of the puzzle—which is why the agency, with the help of the ONC, is focusing its attention on the data captured in EHRs.
In recognition of the important role health IT plays, Gettinger says the ONC is actively supporting the CDC’s response to the U.S. outbreak of the Zika virus.
Among the questions the CDC, along with the ONC, have been attempting to answer—with vendor feedback—are:
• What are the current opportunities for capturing or updating pregnancy status within clinical workflows?
• What existing data standards do HIT developers currently use for recording pregnancy status within clinical workflows?
• What is the most effective and efficient way to identify travel or exposure for the female patient of childbearing age and her sexual partner or partners?
“This has been a very collaborative effort with the Centers for Disease Control,” says James Daniel, public health coordinator in ONC’s Office of Policy, who coordinates ONC activities with state and local health departments as well as the CDC around the implementation of meaningful use objectives. “We are in very close contact with them.”
Daniel argues that the agencies are building on the lessons learned from responses to Ebola and Middle East Respiratory Syndrome (MERS), including “looking back at the things that the health IT developer community found helpful” during those public health emergencies.
As the principal contact between the ONC and CDC on all HIT-related issues, Daniel says the two agencies are coordinating several activities including: developing algorithms, standardizing vocabulary sets and incorporating Zika order sets into HIT products and reaching out to EHR vendors.
Vendor outreach includes “ongoing webinars where every time we have updates to the clinical guidance from CDC, we present our version of the updated guidance from ONC,” adds Daniel, who indicates that the agency also conducts additional webinars to ensure they understand vendor needs.
The webinars are not a new construct, according to the CDC’s Tandon, who says they are a legacy of the CDC/ONC Public Health-Electronic Health Records Vendor Collaboration Initiative, which has conducted regular webinars in recent years with EHR vendors focused on meeting Stage 1 and 2 meaningful use public health objectives.
“We already had that standing platform for webinars, but what we have been doing is leveraging that same platform for special session Zika webinars,” says Tandon.
Since March, the CDC and ONC have jointly conducted about half a dozen Zika virus webinars for EHR vendors and other health IT developers, as well as public health and clinical healthcare partners. For instance, Tandon notes, a November CDC/ONC national webinar is scheduled to discuss the recommendations around “Ask at Order Entry” for pregnancy status in Zika virus laboratory test orders, as well as a broader discussion on the capture of pregnancy status in EHRs, and an update on the algorithm for Zika virus risk assessment in pregnant women based on the latest CDC guidelines.
“The crux of what we’re doing is taking the guidance that comes out of CDC from the Zika EOC—what you might see in the Morbidity and Mortality Weekly Report—and really translating that into something more applicable for health IT developers,” Daniel adds. “Every time there is updated guidance, we create these new algorithms. The health IT developers found this very useful during Ebola, and they find this very useful during Zika as well.”
According to Daniel, one of the biggest challenges is that the CDC’s guidance on Zika is “being constantly updated,” which makes it difficult to keep up with changes. Tandon agrees, adding that the virus “keeps on evolving, and that is why the guidance keeps on evolving, especially with infectious diseases like Zika.”
As a result, Daniel says, the ONC is looking at ways to automate the process of updating records with the latest CDC guidance. In addition, he notes, the Zika vocabulary for vendors is important, as are value sets for implementing the CDC’s interim guidelines, which could be used by the EHR community for decision support.
“We want to make sure that everyone is using the same value sets and everyone knows, for example, the Zika-affected areas and that we’ve got the right value sets for those,” he says.
When it comes to order sets related to Zika, Daniel makes the point that the local variation challenge has introduced complexity-mapping variations that have “made it impossible” for the ONC to develop standard order sets and have prohibited an automated push of orders sets. However, he notes that current documentation (for example, vocabulary standards) on order sets as related to the clinical guidance documents remains useful.
“It’s really the current documentation that we have that allows people to then implement those order sets in their products by either the vendor or the local level,” according to Daniel, who remarks that clinical decision support modules on the Zika workflow are still built at the local level by entities such as group practices or hospitals.
Another major challenge ONC has discovered with Zika is the capture of pregnancy status and other data related to case management, he says.
“It turns out that current pregnancy status is a little difficult to actually pull from electronic health records, and getting that information to public health has been a challenge as well,” Daniel observes. “Public health would very much like to know—at the point that a lab test is ordered—what the pregnancy status of that person is, because it not only means they might need to follow that person for outcomes, but it also plays a role in how they prioritize the testing.”
For its part, Practice Fusion has made CDC educational materials on Zika available to its provider customers in Miami-Dade County—ground zero for the Zika outbreak in the United States—as well as the thousands of practices using the vendor’s products across all 50 states and Puerto Rico.
“These materials are available through links from their EHR, and cover prevention, screening, testing and alleviating symptoms regarding the Zika virus,” adds Loomis.
Daniel says the ONC is working closely with health IT developers and public health partners to try to devise a best practice in how to get pregnancy status information in a timely manner, as well as ensure linkages to state and local health departments and the U.S. Zika Pregnancy Registry.
The CDC has established the U.S. Zika Pregnancy Registry and the Zika Active Pregnancy Surveillance System in Puerto Rico to provide comprehensive monitoring of pregnant women and infant outcomes. These registries are helping the agency better understand the range of adverse outcomes that occur in infants and when in pregnancy those risks are highest for microcephaly and other severe birth defects caused by the virus.
According to Honein, the data collected through the registries will be used to update recommendations for clinical care, plan for services and support for pregnant women and families affected by Zika, as well as improve prevention of infection during pregnancy. The numbers of cases are based on information provided by state, local and territorial public health departments to the pregnancy surveillance systems. “How this is managed at the state and local level varies a lot from jurisdiction to jurisdiction, but electronic health records are being used at many locations,” Honein notes.
Looking to the future, Daniel says one of the goals of Zika coordination between the ONC and CDC is building an “all-hazards approach” that meets the requirements in dealing with not only infectious diseases but other types of public health events. This approach would be based on common building blocks for the workflow and movement of data.
For a given situation, the order of the building blocks may change, and certain blocks may be of less importance, according to Daniel, but the objective is to determine the right blocks and where they belong.
“As we’ve done this for Ebola and as we did this for MERS as well, we’ve realized that we’re really doing the same sets of processes over and over,” he says. “We want to make sure that we’re thinking about this at a higher level so that we’re not starting from scratch every time, and that we can start thinking about the standards to make some of this information flow between public health and our health IT developers more automated.”
Daniel adds that ONC did some work at the HL7 Connectathon and HIMSS Public Health Informatics Conference earlier this year looking at structured data capture using HL7’s emerging Fast Healthcare Interoperability Resources (FHIR) standards to collect some of the information around pregnancy status, as well as CDS Hooks for links to travel history and testing recommendations, and Clinical Quality Framework/FHIR Clinical Reasoning for standard terminology for measures and clinical decision support.
“These are the things we’re starting to think about so that we can start moving forward and have an infrastructure in place that could help support us to do this in a more automated fashion, with Zika and with other infectious diseases and public health responses that come up in the future,” Daniel concludes.
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