By Tanya Taiwo, Program Lead for Birth Justice, Skyline Foundation.
Progress in public health requires a comprehensive and accurate understanding of outcomes and how people are faring. That’s how we know practices are working, or not working—and what policies we need to support the practices that are. Data in the field of perinatal health can be a game changer in advancing birth justice—but in today’s political environment, we appear to be heading in the opposite direction.
Data in the field of perinatal health can be a game changer in advancing birth justice—but in today’s political environment, we appear to be heading in the opposite direction.
Federal Cuts Threaten Data Collection
Data collection is now threatened by cuts in the federal government, especially to PRAMS, a program of the CDC, which pulls information from health plans, state departments of public health, and hospitals. Because race—a proven factor driving disparities in birth outcomes—is tracked by PRAMS, the data has become a political target. Further cuts to the CDC and our public health infrastructure have impacted funding for state perinatal quality collaboratives who are drivers of progress on birth outcomes through use of this data according to the Oregon Perinatal Collaborative. Yet we know from the data that a focus on birth center equity is essential to healthy birth outcomes for women of color. That’s vitally important, because we know that when we make improvements in care for those who are the most vulnerable we benefit all of us.
Given the existing gaps in the data landscape, the impact of these unprecedented cuts in funding will be far-reaching. Not only has the PRAMS program itself been shuttered, but decades of historical data has been purged, and it’s unclear when or whether data collection will resume. This disruption has torn an even larger, gaping hole in the data needed to understand our perinatal healthcare system and improve birth outcomes. Data is put to work in the field on a real-time basis. For example, in California’s successful effort to reduce C-section rates, data on comparative rates at different hospitals helped in targeting both QA efforts and incentives.
A Patchwork Data Picture
The current data we have on birth outcomes is hugely reliant on public agencies like the Centers for Disease Control and an integrated system that connects multiple players across the states, connecting local and state entities with a central repository. For example, states submit birth certificate data to the CDC, while hospitals and health plans track rates of maternal and infant health indicators like cesarean section, preterm deliveries, interventions used, and morbidity and mortality. This information is used to assess hospital quality, improve outcomes, and understand trends.
Separate from this infrastructure, data on community birth outcomes relies largely on systems developed by midwives and volunteers, and relies on the midwives themselves to report individually. But the major data sets, while providing valuable information to the field, already have major gaps and limitations:
- MANA Stats. In 2004, the Midwives Alliance of North America’s (MANA’s) Division of Research developed a Web-based data collection system (MANA Stats) to gather information on the practices and outcomes associated with midwife-led births in the United States. The 2004-2009 data set contains more than 24,000 records. The sample was voluntary, so it may not accurately reflect population-based outcomes.
- Community Birth Data Registry (CBDR). Due to concerns about the funding, technology, and data security of MANA Stats, in 2019 the Midwives Association of Washington State advocated for the creation of the CBDR at the Foundation for Healthcare Quality. The Foundation houses a suite of programs centered around quality improvement and patient safety, including the OB Care Outcomes Assessment Program (OB COAP) and Smooth Transitions. The CBDR provides an ongoing view of outcomes across all care settings (including hospitals) and maternity care providers, and is now being made available nationwide.
- American Association of Birth Centers. Also working to fill this void is the under-resourced AABC perinatal data registry, which still does not cover all birth centers due to cost restrictions and the time that it takes for midwives to manually upload their data. The data set generated from the registry increases our ability to evaluate and improve the delivery of care to childbearing women and families and to contribute to research.
Developing an Accountability Infrastructure
Against this challenging backdrop, the field of midwifery is moving forward to build an accountability infrastructure for community births. Data collection is an essential part of this long term accountability plan, which is the 10-year North Star of several midwifery organizations led by NACPM (the national group advocating for midwifery) and Uplift Labs (spearheading research in this field). According to NACPM: “A comprehensive Certified Professional Midwife (CPM) Quality System is essential for ensuring high standards of care, especially given the longstanding commitment CPMs have shown towards quality despite operating with limited resources, inadequate state support, and no federal backing.”
Against this challenging backdrop, the field of midwifery is moving forward to build an accountability infrastructure for community births.
Comprehensive data collection will enable the field to identify problems and patterns and develop strategies and a process for quality improvement. Long term, the goal is to create a federally-recognized system for community births.
While this more far-reaching goal may not be possible now, some progress at the federal level may happen this year, generating momentum for the field. Even in this polarized political climate, several bills supporting midwifery have gained bipartisan support:
- The Midwives for Service Members Act guarantees access to Certified Professional Midwives (not just nurse midwives) for members of the armed services.
- The BABIES Act would make birthing centers more accessible and sustainable.
- The Midwives for Moms Act would provide the first federal funds for midwifery education.
Midwifery has already become a focus at the federal level. In 2018, Congress mandated an analysis of current gaps in our maternity care system by the National Academies of Science, Engineering, and Medicine (NASEM)—the highest scientific body in the United States. This study and subsequent recommendations outlined by NASEM identified a key solution to our maternal health crisis: Universal access to high-quality, culturally congruent midwives who act as primary care providers in all birth settings (home, birth center and hospital) within an integrated system.
An Opportunity for Philanthropy
Funding data collection in this field is a strategic opportunity for philanthropy to put dollars where they are needed, in an area that has never had attention, at a critical moment for the field and our public health infrastructure. Funding now can catalyze the spread of automation, facilitate the aggregation of data to drive improved outcomes, as well as pave the way for potential policy victories.
Funding data collection in this field is a strategic opportunity for philanthropy to put dollars where they are needed
Funders can also help right an historic wrong: long term underfunding of midwifery and community birth. While hospitals receive public funding to establish systems to maintain quality, midwifery organizations have always stepped into this role, and midwives have logged countless hours manually uploading data that have given us the research we currently have. No where else do we put this burden on the healthcare provider.
The midwifery field is ready to lead—if resourced. AABC has established critical infrastructure for birth centers, accreditation and PDR. NACPM has stepped into leadership of the QI work. FHCQ’s CBDR provides an ongoing view of outcomes across all care settings and providers. Data may not be sexy, but it drives improvement that can help mothers and babies. Until we can rebuild public health infrastructure that has been shredded in recent months, these groups need core support to move forward.
Tanya Taiwo, Program Lead for Birth Justice, Skyline Foundation
