Response to the Federal Government’s Proposed Health IT Maternal Health Data Set

July 30, 2024

Office of the National Coordinator for Health Information Technology

To Whom It May Concern,

The Policy Center for Maternal Mental Health has reviewed the proposed Maternal Health USCDI+ data set at HealthIT.gov 

Following is our feedback about specific data elements that could pertain to maternal mental health.

We reviewed the following data classes: Behavioral Health, Family Health History, Health Insurance Information, Health Status Assessments, Labor and Delivery, Condition Complications, Lactation, Medications, Mortality, Patient Demographics, Postpartum. 

Behavioral Health

Screening Type Comment: include a range of screening tools (another field references the EPDS, should it be referenced here instead).  Such as, PHQ-2/4/9, GAD-7, etc. See a list of screening tools on the Policy Center for Maternal Mental Health’s website.  This will be important to document, as new measures assess for screening and follow-up within 30 days.

Additionally, add a new data element titled “Follow-up within 30 days” in accordance with the HEDIS measure for maternal depression/mental health screening. 

Family Health History

Family Health History Comment: Change to Personal and Family Health History, to include mental health history, substance use history, and past maternal health complications.

Health Insurance Information  

Comment: This data should be collected, however, it should not be viewable to treating providers, as this information can, intentionally or unintentionally, influence equitable care delivery. 

Health Status Assessments

Anxiety Screen Comment: Please change data element to “Screening Tool Used” or something similar and note examples of screeners, which include EPDS or GAD 2/7 in the perinatal period. Add a new data element “Mental Health Status” to note if anxiety, depression, etc. is present along with screening score, and additional assessment notes.

Depression Screen Comment: See above.  

Additionally add a new data element “Additional Mental Health Screen” to account for screening related to bipolar disorder, suicide risk, etc. in accordance with ACOG Clinical Practice Guidelines/AIM perinatal mental health bundle recommendations. 

Mental/Cognitive Status Comment: perhaps change this to “Visual Assessment.” Should there be a related data element pertaining to medical testing to assess for medical complications or substance/drug interactions?

Alcohol Use Comment: Consider breaking this out into separate data elements similar to mental health history, diagnostic tools, etc. 

Substance Use Comment: See the comment directly above. 

Smoking Status Comment: See the comment directly above. 

Labor and Delivery

Labor Type Comment: Add planned or unplanned C-section

Lactation

Reason Lactation Was Stopped Comment: add “Choice”, add “Mental Health Complication”, add “Substance Use Complication”

Reason for Not Exclusively Breastfeeding Comment: We prefer the Supplementation Option drop-down over a free form field for “Reason for Not Exclusively Breastfeeding” as a provider is likely to ask the patient why she/they are not exclusively breastfeeding which implies she/they are failing to meet such an expectation. The Baby-Friendly Hospital breastfeeding movement has created a culture of pressure for mothers to breastfeed at all costs, even to the detriment of their mental health. 

Add “Choice”, add “Mental Health Complication,” add “Substance Use Complication” 

Medications

Medication Adherence Comments: add “patient-reported reason why, such as cost, adverse reaction, or medication seemingly ineffective” This is important to help determine alternative treatments/interventions. 

Mortality

Cause of Death Comment: Because Maternal Mortality Review Committees utilize medical record review to determine the cause of death, it’s unclear whether this field should or should be expanded upon further.  

Patient Demographics

Occupation Comment: Why does this field need to be collected?  If it’s to understand physical risk from a hazardous role for example, could “Occupation” be replaced with “Hazardous Daily Work” drop-down with level of hazard.  This could include a hazardous job, such as construction or exposures to chemicals, for example. 

Tribal Affiliation Comment: Why is this necessary? Is this tied to how a patient may obtain her/their care?  We don’t believe so, as we understand Indian Health Services, for example, are available regardless of tribal affiliation. If this is not related to the provision of care, it doesn’t need to be asked. If it is being asked to allow the provider to have racial and ethnic data, then this should be collected with other racial and ethnic data sets. 

Sex Comment: Should this be changed to pronouns, given we already know that the patient is pregnant/postpartum or capable of becoming pregnant (i.e. assigned female at birth (AFAB)?  Respectful care can include using a person’s preferred pronouns. 

Relationship Type Comment: We don’t understand this field. Should this be relationship status? And if so, is the intent to understand the patient’s practical and social support structure at home? If so, this should be clarified.  We believe it’s important to ask about and understand a patient’s support system.  We are unsure if this should be a patient demographic however, it may be more appropriate to include in the SDoH data class.

Postpartum 

Diagnosis Type Comment: The name of this data element is confusing to us, given you are collecting the type of tool used to diagnose or assist with diagnosis.  Further it’s helpful to see the EPDS maternal depression screener listed, however maternal mental health screening tools such as the EPDS should be utilized in the prenatal period as well. See the AIM perinatal mental health bundle recommendations and/or the American College of Obstetrics and Gynecologists’ clinical practice guidelines. 

Postpartum Indicator Comment: Should there also be a “Prenatal Indicator” encounter element?

Problems

SDoH Problems/Health Concerns Comment: We are not sure this should be collected by the provider rather than the health plan or state Medicaid agency (who should/could lead interventions as well), and it’s unclear if a provider who has access to this data will provide equitable care regardless of SDoH status. These conversations are occurring in places like the Medicaid Core Set working group. 

This applies to other SDoH data elements as well.

Work Information 

We don’t believe any of these data elements need to be collected. Whether a patient works isn’t relevant to her health status as much as the measurement of stress, hazard, etc. See the comment above about collecting information about hazardous daily work.

We appreciate the opportunity to review this dataset and provide feedback.