Comment

Adding Pregnancy Outcomes to Pregnancy Status

Unified Comment on behalf of the Maternal Health Consortium, funded by the Office of the Secretary’s Patient-Centered Outcomes Research Trust Fund (OS-PCORTF)

 

The rates of maternal mortality have been rising in the United States since 1987. Yet this measure does not capture data related to maternal health and well-being. Understanding maternal health before, during, and after delivery is foundational for developing safer, more effective approaches to maternal care. Clinical data relevant to understanding this trend are not standardized, and data exchange is not interoperable across many relevant settings. Furthermore, maternal health and associated child health are inextricably linked – what happens during gestation, delivery, and after informs health outcomes of both mother and child – but relevant data is often held in separate, unconnected records. These issues impede research on maternal morbidity and longitudinal maternal care and associated impacts to infant health. Research on root causes of maternal mortality, poor outcomes, pediatric developmental problems, and effective treatments requires exchange of information stored in disparate sources, such as electronic health record (EHR) systems, disease registries, and public health agencies (PHAs).

 

Research use case populations as described in the draft Longitudinal Maternal & Infant Health -FHIR Implementation Guide (https://build.fhir.org/ig/HL7/fhir-mmm-ig/):

  • Pregnancy and subsequent death within a specific time frame: This cohort includes individuals who died within a year (365 days) of a pregnancy regardless of cause of death or pregnancy outcome.
  • Hypertensive Disorders of pregnancy: This use case focuses on individuals with a diagnosis of hypertensive disorders of pregnancy.

We strongly promote and support the addition of the pregnancy status data element to the health status data class. In addition, the Consortium also recommends either an additional data element to capture pregnancy outcomes, such as live birth, stillbirth or intrauterine fetal demise, miscarriage or spontaneous abortion, or addition to provision of best practice guidance to document the pregnancy outcomes in the cases where the pregnancy status indicator was “currently pregnant”. It is important to identify and collect pregnancy outcomes. Adverse pregnancy outcomes  can have lifelong effects on the pregnant individual’s health, such as developing hypertension or cardiovascular disease post-delivery, as well the infant’s health.

 

Element and links to suggested existing resources.  

https://browser.ihtsdotools.org/?perspective=full&conceptId1=404684003&edition=MAIN/SNOMEDCT-US/2022-03-01&release=&languages=en

https://www.healthit.gov/isa/taxonomy/term/771/draft-uscdi-v3

http://www.hl7.org/fhir/us/mihr/ValueSet/PregnancyNonLive

http://www.hl7.org/fhir/us/mihr/ValueSet/pregnancy

http://terminology.hl7.org/CodeSystem/condition-ver-status

http://www.hl7.org/fhir/us/mihr/ValueSet/PregnancyProcedureDelivery-CPT

 

 

Level 2 Data Class: Pregnancy Information

IMO supports the inclusion of Pregnancy Status in USCDI V3 but would like to note that the technical specifications cited in the proposal for inclusion in USCDI V3 as a level 2 data element are not currently implemented in production environments.

IMO would support the inclusion of a data element specified with LOINC coding for Pregnancy status 82810-3. The use of LOINC 82810-3 is aligned with the current version of FHIR R4 International Patient Summary Implementation Guide (v1.0.0 CI Build) as well as ISA recommendations for Representing Patient Pregnancy Status, which incorporates the LL4129-4 answer codes in the correct format. ONC certified HIT can exchange this data element.

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