The Challenges of Zika:
A Health IT Response
James Daniel, Public Health Coordinator, Office of Policy (OPOL), ONC
September 8, 2016
Agenda
• Introduction and history
• EHRs and Zika – A detailed look
• Pregnancy Status and EHRs
• Thoughts on an All-Hazards approach to Public
Health Responses and EHRs
Introduction and History
First time in history…
"Never before in history has there been a situation where a bite from a
mosquito could result in a devastating malformation,“ Dr. Tom Frieden, CDC
Director, Fortune, April 13, 2016
“…the last time an infectious pathogen (rubella virus) caused an
epidemic of congenital defects was more than 50 years ago…”
– S.Rasmussen et al. New England Journal of Medicine, April 13, 2016
“[Zika] became the first major infectious disease linked to human birth defects
to be discovered in more than half a century and created such global alarm
that the World Health Organization (WHO) would declare a Public Health
Emergency of International Concern.”
– Petersen et al. New England Journal of Medicine, March 30, 2016
Zika Virus Infection in Pregnant Women
 Pregnant women can be infected
– Through a mosquito bite
– Through sex with an infected
partner
 If infected around conception,
– Zika might present risk to fetus
 If infected during pregnancy,
– Zika can be passed to the fetus
during pregnancy or around the
time of birth
Pregnant women with any laboratory evidence of
possible Zika virus infection in the US states and DC
Pregnant women with any laboratory evidence of
possible Zika virus infection in U.S. territories
(currently including Puerto Rico, U.S. Virgin Islands,
and American Samoa)
529 691
Number of Pregnant Women Who May Be Affected
US Virgin
Islands
American
Samoa
Puerto
Rico
As of August 11, 2016
Adverse Outcomes and Zika Virus
 A range of problems have been detected among fetuses and infants with
known or suspected congenital infection with Zika virus including:
– Microcephaly
– Brain atrophy and asymmetry
– Eye abnormalities
– Limb abnormalities
– Growth abnormalities
– Hearing impairment
– Seizures
– Swallowing impairment
– Developmental delay
Karwowski MP, Nelson JM, Staples JE, et al. Zika Virus Disease: A CDC Update for Pediatric Health Care Providers. Pediatrics. 2016;137(5):e20160621
Current activities
Activities Underway
• Building on lessons learned from Ebola, MERS
• An algorithm for developers
• Vocabulary sets
• Order sets
• Links for additional information – Infobutton?
• Vendor discussions
MMWR – Guidance for Clinicians
Algorithms for developers
Algorithms for developers (Information)
1. Areas with
active Zika
transmission
Areas of known Zika virus transmission.
http://www.cdc.gov/zika/geo/index.html
2. Travel and
Mosquito
Prevention
Advice
a. Advice for patients about how to avoid Mosquito bites.
http://www.cdc.gov/zika/prevention/index.html
b. Advice for patients about which mosquito repellents are effective and safe to use in
pregnancy. [DEET, IF3535 and Picardin are safe during]
https://www.epa.gov/insect-repellents/find-insect-repellent-right-you
3. Prevention of
Sexual
Transmission
The most current interim guidelines for prevention of sexual transmission of Zika virus.
http://www.cdc.gov/zika/transmission/index.html
http://www.cdc.gov/mmwr/volumes/65/wr/mm6512e3.htm
4. Signs and
Symptoms
Signs and Symptoms of Zika virus disease and information about how a clinician might
differentiate Zika virus infection from other similar infections.
http://www.cdc.gov/zika/symptoms/index.html
5. Possible
microcephaly
association
Known information about association between Zika virus infection and microcephaly and other
known complications.
http://www.cdc.gov/ncbddd/birthdefects/microcephaly.html
6. Zika Virus
Diagnostic
Testing
Explanation of diagnostic tests for Zika virus and which to use based on the patient’s clinical
and exposure history.
http://www.cdc.gov/zika/hc-providers/diagnostic.html
Algorithms for developers (Value Sets)
Public Health Information Network Vocabulary Access Distribution System (PHIN-VADS)
https://phinvads.cdc.gov/vads/SearchVocab.action
PHIN VADS Hot Topics
Zika virus disease associated Lab Vocabulary (ELR) - Includes value sets associated with lab testing
algorithm for Zika, Chikungunya and Dengue
FILE: Zika_Lab_Test_Information_20160517.pdf - Testing algorithm information for Epidemiologist
and Lab experts using standard vocabulary
FILE: Zika_virus_codes_for_ELR_20160517.xlsx - Technical information for ELR IT staff - LOINC and
SNOMED codes
LINK: Information for State Public Health labs from CDC
Zika vocabulary for EHR and Health IT vendors - Includes value sets for implementing the CDC's
interim guidelines which could be used by EHR community for decision support or pick list.
LINK: Zika affected areas
FILE: Zika Virus Vocabulary for EHR - 02_01_2016.pdf - Includes value sets associated with Zika,
Dengue, Chikungunya, Arboviral diseases, Pregnancy, Newborn and Infant.
FILE: Zika related CPT procedure codes_04152016.pdf - CPT procedure codes associated with Zika
lab tests and imaging.
Vocabulary Sets
Order Sets
• How order sets may be incorporated into products
• The local variation challenge; mapping variations may
prohibit an automated push of orders sets
• Current documentation on order sets as related to the
clinical guidance documents remain useful
Links for additional information – the
Infobutton standard?
Other Standards
• Clinical Quality Framework
– Clinical Decision Support
• Structured Data Capture
Capture of Pregnancy Status in EHRs is Essential for an
effective Response to Zika Virus
 Locations of testing is expanding:
– More states are developing capacity for IgM and
plaque reduction neutralization antibody testing
(PRNT)
– Additional testing in commercial laboratories
 Participation in the US Zika Pregnancy Registry will
likely decline without pregnancy status reporting
– Less data available to monitor and understand Zika
and pregnancy in the United States
– A potentially less informed public health response
Emergency Preparedness:
All hazards planning
ICS
Thoughts on an All-Hazard approach
to Public Health Responses/EHRs
• All-hazard planning
• National Incident Management System
(NIMS)
• Incident Command System (ICS)
Similar past work
The Common Ground Preparedness
Framework
Patient Characteristics
•Gender
•Age
•Pregnancy Status, sexual activity
Exposure
•Where were you? When were you there?
•Examples: travel history, lived in Flint MI, known down wind of a radiation incident
Symptoms
•What the patient says
•E.g. chief complaint – “I have the worst headache ever”
Physical findings
•What the provider measures, e.g. temperature
•What the provider observes, eg. Patient appears sensitive to light
Assessment and Plans
• Tests
•Orders (pregnancy)
• Results
The patient profile – in general
The patient profile – Workflow
Patients who have traveled
to areas at risk (e.g., known
Zika Virus transmission,
lead exposure or radiation)
TRIGGER
Identify patients with risk, e.g.,
•All patients presenting to clinic
•All pregnant female patients
EXPOSURE SYMPTOMS
Patient history / symptoms
based on the suspected
exposure
FINDINGS - EXAMINATION TESTING TREATMENT
ISOLATION
REFERRAL
Findings on examination
consistent with the condition or
exposure
Studies appropriate to
help define if the
condition is present
Recommendations regarding
how to manage
a) The patient
b) Healthcare workers
c) The patient’s exposures
Building blocks
• For a given situation, the order of the building
blocks may change, or be of no importance. Just
capture all the factors you will need.
• Later you may be concerned about order,
optimizing workflow (i.e. move individuals out of
the queue, drive reflective questioning)
Other factors being considered
• Reporting to Public Health (eICR)
– Electronic Initial Case Report
• Infection Control Aspects
– Rule out measles sitting in waiting room
– Identify contacts; isolate patients appropriately
– Access to EHR for other staff
• Clinical Quality Framework
– Include providing decision support
– Providing care; not generating reports
Other factors to consider
• Maintenance (for example updated locations,
risk history questions)
• Be mindful of alert fatigue
• Information for patients
– Patient Portals/Pull and push information
– Pharmacies
– Care navigators
Other factors to consider
• Improved communications with PH
– Follow up with patients and providers
– Additional reporting
• Requirements for sending samples to PH
– Criteria for sending in a sample with limitations for
testing may changes on a daily basis
• Everyday situations at the local level (e.g.
meningitis in homeless population)
SANJEEV TANDON, MD, MS,
LEAD, ELECTRONIC HEALTH RECORDS MEANINGFUL USE AND CSELS HEALTH
IT TEAM (CDC IMS ZIKA VIRUS RESPONSE), CENTERS FOR DISEASE CONTROL
AND PREVENTION (CDC), ATLANTA, GA, OFFICE OF THE DIRECTOR (OD) - CENTER
FOR SURVEILLANCE, EPIDEMIOLOGY AND LABORATORY SERVICES (CSELS)
FLOYD EISENBERG, MD, MPH, FACP,
PRINCIPAL, IPARSIMONY, LLC
DANIEL CHAPUT, MM
IT SPECIALIST, OFFICE OF STANDARDS AND TECHNOLOGY (OST), ONC
RACHEL ABBEY, MPH
PUBLIC HEALTH ANALYST, OFFICE OF POLICY, ONC
HILARY WALL, MPH
ZIKA EOC, CDC
MARGARET LAMPE, MD
ZIKA EOC, CDC
Acknowledgements
Contact Information
Email: james.daniel@hhs.gov
@jim_daniel

The challenges of zika: a health IT response

  • 1.
    The Challenges ofZika: A Health IT Response James Daniel, Public Health Coordinator, Office of Policy (OPOL), ONC September 8, 2016
  • 2.
    Agenda • Introduction andhistory • EHRs and Zika – A detailed look • Pregnancy Status and EHRs • Thoughts on an All-Hazards approach to Public Health Responses and EHRs
  • 3.
  • 4.
    First time inhistory… "Never before in history has there been a situation where a bite from a mosquito could result in a devastating malformation,“ Dr. Tom Frieden, CDC Director, Fortune, April 13, 2016 “…the last time an infectious pathogen (rubella virus) caused an epidemic of congenital defects was more than 50 years ago…” – S.Rasmussen et al. New England Journal of Medicine, April 13, 2016 “[Zika] became the first major infectious disease linked to human birth defects to be discovered in more than half a century and created such global alarm that the World Health Organization (WHO) would declare a Public Health Emergency of International Concern.” – Petersen et al. New England Journal of Medicine, March 30, 2016
  • 5.
    Zika Virus Infectionin Pregnant Women  Pregnant women can be infected – Through a mosquito bite – Through sex with an infected partner  If infected around conception, – Zika might present risk to fetus  If infected during pregnancy, – Zika can be passed to the fetus during pregnancy or around the time of birth
  • 6.
    Pregnant women withany laboratory evidence of possible Zika virus infection in the US states and DC Pregnant women with any laboratory evidence of possible Zika virus infection in U.S. territories (currently including Puerto Rico, U.S. Virgin Islands, and American Samoa) 529 691 Number of Pregnant Women Who May Be Affected US Virgin Islands American Samoa Puerto Rico As of August 11, 2016
  • 7.
    Adverse Outcomes andZika Virus  A range of problems have been detected among fetuses and infants with known or suspected congenital infection with Zika virus including: – Microcephaly – Brain atrophy and asymmetry – Eye abnormalities – Limb abnormalities – Growth abnormalities – Hearing impairment – Seizures – Swallowing impairment – Developmental delay Karwowski MP, Nelson JM, Staples JE, et al. Zika Virus Disease: A CDC Update for Pediatric Health Care Providers. Pediatrics. 2016;137(5):e20160621
  • 8.
  • 9.
    Activities Underway • Buildingon lessons learned from Ebola, MERS • An algorithm for developers • Vocabulary sets • Order sets • Links for additional information – Infobutton? • Vendor discussions
  • 10.
    MMWR – Guidancefor Clinicians
  • 11.
  • 12.
    Algorithms for developers(Information) 1. Areas with active Zika transmission Areas of known Zika virus transmission. http://www.cdc.gov/zika/geo/index.html 2. Travel and Mosquito Prevention Advice a. Advice for patients about how to avoid Mosquito bites. http://www.cdc.gov/zika/prevention/index.html b. Advice for patients about which mosquito repellents are effective and safe to use in pregnancy. [DEET, IF3535 and Picardin are safe during] https://www.epa.gov/insect-repellents/find-insect-repellent-right-you 3. Prevention of Sexual Transmission The most current interim guidelines for prevention of sexual transmission of Zika virus. http://www.cdc.gov/zika/transmission/index.html http://www.cdc.gov/mmwr/volumes/65/wr/mm6512e3.htm 4. Signs and Symptoms Signs and Symptoms of Zika virus disease and information about how a clinician might differentiate Zika virus infection from other similar infections. http://www.cdc.gov/zika/symptoms/index.html 5. Possible microcephaly association Known information about association between Zika virus infection and microcephaly and other known complications. http://www.cdc.gov/ncbddd/birthdefects/microcephaly.html 6. Zika Virus Diagnostic Testing Explanation of diagnostic tests for Zika virus and which to use based on the patient’s clinical and exposure history. http://www.cdc.gov/zika/hc-providers/diagnostic.html
  • 13.
    Algorithms for developers(Value Sets) Public Health Information Network Vocabulary Access Distribution System (PHIN-VADS) https://phinvads.cdc.gov/vads/SearchVocab.action PHIN VADS Hot Topics Zika virus disease associated Lab Vocabulary (ELR) - Includes value sets associated with lab testing algorithm for Zika, Chikungunya and Dengue FILE: Zika_Lab_Test_Information_20160517.pdf - Testing algorithm information for Epidemiologist and Lab experts using standard vocabulary FILE: Zika_virus_codes_for_ELR_20160517.xlsx - Technical information for ELR IT staff - LOINC and SNOMED codes LINK: Information for State Public Health labs from CDC Zika vocabulary for EHR and Health IT vendors - Includes value sets for implementing the CDC's interim guidelines which could be used by EHR community for decision support or pick list. LINK: Zika affected areas FILE: Zika Virus Vocabulary for EHR - 02_01_2016.pdf - Includes value sets associated with Zika, Dengue, Chikungunya, Arboviral diseases, Pregnancy, Newborn and Infant. FILE: Zika related CPT procedure codes_04152016.pdf - CPT procedure codes associated with Zika lab tests and imaging.
  • 14.
  • 15.
    Order Sets • Howorder sets may be incorporated into products • The local variation challenge; mapping variations may prohibit an automated push of orders sets • Current documentation on order sets as related to the clinical guidance documents remain useful
  • 16.
    Links for additionalinformation – the Infobutton standard?
  • 17.
    Other Standards • ClinicalQuality Framework – Clinical Decision Support • Structured Data Capture
  • 18.
    Capture of PregnancyStatus in EHRs is Essential for an effective Response to Zika Virus  Locations of testing is expanding: – More states are developing capacity for IgM and plaque reduction neutralization antibody testing (PRNT) – Additional testing in commercial laboratories  Participation in the US Zika Pregnancy Registry will likely decline without pregnancy status reporting – Less data available to monitor and understand Zika and pregnancy in the United States – A potentially less informed public health response
  • 19.
  • 20.
    Thoughts on anAll-Hazard approach to Public Health Responses/EHRs • All-hazard planning • National Incident Management System (NIMS) • Incident Command System (ICS)
  • 21.
  • 22.
    The Common GroundPreparedness Framework
  • 23.
    Patient Characteristics •Gender •Age •Pregnancy Status,sexual activity Exposure •Where were you? When were you there? •Examples: travel history, lived in Flint MI, known down wind of a radiation incident Symptoms •What the patient says •E.g. chief complaint – “I have the worst headache ever” Physical findings •What the provider measures, e.g. temperature •What the provider observes, eg. Patient appears sensitive to light Assessment and Plans • Tests •Orders (pregnancy) • Results The patient profile – in general
  • 24.
    The patient profile– Workflow Patients who have traveled to areas at risk (e.g., known Zika Virus transmission, lead exposure or radiation) TRIGGER Identify patients with risk, e.g., •All patients presenting to clinic •All pregnant female patients EXPOSURE SYMPTOMS Patient history / symptoms based on the suspected exposure FINDINGS - EXAMINATION TESTING TREATMENT ISOLATION REFERRAL Findings on examination consistent with the condition or exposure Studies appropriate to help define if the condition is present Recommendations regarding how to manage a) The patient b) Healthcare workers c) The patient’s exposures
  • 25.
    Building blocks • Fora given situation, the order of the building blocks may change, or be of no importance. Just capture all the factors you will need. • Later you may be concerned about order, optimizing workflow (i.e. move individuals out of the queue, drive reflective questioning)
  • 26.
    Other factors beingconsidered • Reporting to Public Health (eICR) – Electronic Initial Case Report • Infection Control Aspects – Rule out measles sitting in waiting room – Identify contacts; isolate patients appropriately – Access to EHR for other staff • Clinical Quality Framework – Include providing decision support – Providing care; not generating reports
  • 27.
    Other factors toconsider • Maintenance (for example updated locations, risk history questions) • Be mindful of alert fatigue • Information for patients – Patient Portals/Pull and push information – Pharmacies – Care navigators
  • 28.
    Other factors toconsider • Improved communications with PH – Follow up with patients and providers – Additional reporting • Requirements for sending samples to PH – Criteria for sending in a sample with limitations for testing may changes on a daily basis • Everyday situations at the local level (e.g. meningitis in homeless population)
  • 29.
    SANJEEV TANDON, MD,MS, LEAD, ELECTRONIC HEALTH RECORDS MEANINGFUL USE AND CSELS HEALTH IT TEAM (CDC IMS ZIKA VIRUS RESPONSE), CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC), ATLANTA, GA, OFFICE OF THE DIRECTOR (OD) - CENTER FOR SURVEILLANCE, EPIDEMIOLOGY AND LABORATORY SERVICES (CSELS) FLOYD EISENBERG, MD, MPH, FACP, PRINCIPAL, IPARSIMONY, LLC DANIEL CHAPUT, MM IT SPECIALIST, OFFICE OF STANDARDS AND TECHNOLOGY (OST), ONC RACHEL ABBEY, MPH PUBLIC HEALTH ANALYST, OFFICE OF POLICY, ONC HILARY WALL, MPH ZIKA EOC, CDC MARGARET LAMPE, MD ZIKA EOC, CDC Acknowledgements
  • 30.

Editor's Notes

  • #5 Although Zika virus is not new, its effects on pregnancy are a new phenomenon, as you can see from these quotes. We are quite literally learning more about Zika and what it means for pregnant women every day. So let’s talk about we know about Zika and pregnancy.
  • #6 Pregnant women can be infected with Zika virus through the bite of an infected mosquito or through sex with an infected male partner. If a woman is infected with Zika around the time of conception, the risk to the fetus is currently unknown. However, from what we know about other viral infections, infections around the time of conception can potentially lead to infections in the fetus. If a woman is infected during pregnancy, Zika virus can be passed to her fetus during pregnancy or around the time of birth.
  • #7 And, as of August 11th, we have worked with state, local, tribal, and territorial health departments to identify 529 pregnant women with any laboratory evidence of possible Zika virus infection, with or without symptoms, in the United States and DC. And 691 pregnant women in the US territories, including Puerto Rico, US Virigin Island, and American Samoa. So, why does this matter and what do we know about the effect of Zika on fetuses and infants?
  • #8 In addition to microcephaly, a range of other problems have been detected among fetuses and infants infected with Zika virus before birth such as Microcephaly and other brain irregularities (Hilary’s phrasing) Eye abnormalities Hearing impairment Seizures Swallowing impairment and Developmental delay
  • #19 Enabling the ready inclusion of pregnancy status in electronic health records is especially important now, because the efforts to gather the important information for the registry will become increasingly challenging. CDC has distributed the CDC IgM MAC ELISA assay to state and now the major commercial laboratories for the purpose of expanding the capacity for Zika testing. Because more testing will occur without the involvement of the state or CDC, it will become increasingly challenging to identify which women with laboratory evidence of Zika virus infection are pregnancy. This will likely lead to decreased participation in the US Zika Pregnancy Registry, resulting in less data available to monitor and understand Zika and pregnancy in the United States, and also a potentially less informed public health response.