The Crisis:

Maternal mortality and morbidity—an indicator of a nation’s overall health—is at crisis levels in the United States. The U.S. has the highest maternal mortality rate among high-income countries, with rates more than 2 times higher than countries like Canada and the U.K.¹ The Black maternal mortality rate is 3.7 times higher than that of White women.²
This crisis is no less acute in the Midwest region where KC Digital Drive has established its many programs and community partnerships.

The Tragedy of Preventable Death:

Missouri’s Maternal Mortality Committee reports that over 80% of maternal deaths are preventable. These are deaths of mothers that could be avoided with the evidence-based, timely, coordinated, and continuous care that good data standardization and interoperability can provide.

• There are clear consensus care standards from prenatal risk assessment through pregnancy to one year postpartum, including new personalized care schedules. They aren’t followed.
• The highest risk period for mortality is the postpartum year outside of the inpatient setting. And patients are required to drive increasingly farther distances.
• Network inadequacy. Hospitals are closing their Labor and Delivery Units. New care venues and use of remote monitoring and telemedicine are needed. All birth providers should be working at the top of their scope. Midwives and Birth Centers are grossly underutilized.
• Claim-driven Fee for Service reimbursement supports costly interventions and NICU admissions. It does not incentivize provider teams to work together to produce personalized outcomes. Alternate Payment Methods based on SDoH-informed clinical data are possible.

The Missing Link: Health Information Technology in the Perinatal Episode

Providers are faxing and mailing medical records to each other. Data exchange between care settings is fragmented, inconsistent, and too often incomplete. Without standardized, interoperable data that follows mothers across providers and systems, care coordination is impossible—and lives are lost.

A Model for Change: Adoption of USCDI+ Maternal Health

With prompting directly from leadership of HHS’s Office of the Assistant Secretary for Technology Policy, we are building on successful precedents like the Cancer Research Data Exchange Summit in Nashville (May 2024)⁴ which resulted in a new cancer data standard adopted by the major electronic health records suppliers.

KC Digital Drive is working with regional and national partners to:

• Convene a broad coalition across care roles, communities, and technical domains.
• Define and harmonize maternal health data needs across the care continuum.
• Drive adoption of a common data standard for maternal and infant health, supporting longitudinal, whole-person care.

Supported by a national steering committee and modeled on HHS-backed efforts (including national and state leadership from CDC, NIH, CMS, HRSA, ASTP), we focus on technical interoperability and real-world implementation between electronic health records, health information exchanges and health data utilities using national frameworks like USCDI, FHIR, and HL7 FAST.

Why Kansas City?

The Kansas City region is home to HHS Region 7, innovative healthcare leaders, public health champions, and a vibrant tech ecosystem. The opportunity is there for regional leaders to shape a national movement—putting us at the forefront of maternal / infant health and digital innovation.

Join Us

This is an urgent call for action. With your partnership—whether as a funder, participant, or supporter—we can help lead the transformation of maternal and infant health nationwide. In particular, if you are a health IT professional, your skills are important. Join a Coalition of the Willing to contribute to a HITECH cross-functional and provider-inclusive Interoperability Working Group here.

Let’s talk about how all of us can make a real difference.
References:

1.) Commonwealth Fund; 2.) Centers for Disease Control and Prevention, 2023; 3.) Missouri Department of Health and Senior Services Division of Community and Public Health, Pregnancy-Associated Mortality Review (PAMR); 4.) USCDI+ Cancer Research Data Exchange Summit – Nashville