9/20/22: NBEC’s Respectful Maternity Care Initiative

Thank you for participating in this month’s Maternal Health Hub Learning Community session on the National Birth Equity Collaborative’s (NBEC) Respectful Maternity Care Initiative featuring Dr. Susan Perez, PhD, MPH (Research and Strategy Consultant, NBEC) and Afua Nyame-Mireku, MPH (Senior Birth Equity Research Analyst).

View the meeting recording here and slides here.

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Afua and Susan presented on NBEC’s Respectful Maternity Care Initiative and several ongoing projects to develop measures that reflect the birthing individual’s lived experience.

Afua provided background on why Patient Reported Experience Measures (PREM) are so critical to transforming maternity care. With the founding of modern gynecology came the abolition of traditional midwifery, doula care, and homebirths. This transition to birth in the hospital led to de-centering of patients’ birth experiences, de-valuing of bodily autonomy, and ignorance of Black pain. Given the current maternal health crisis in the U.S. where Black and Indigenous communities have higher pregnancy-related mortality rates compared to white communities, there is a dire need for patient-reported experience measures in maternity care, specifically for Black birthing individuals.

NBEC’s measurement work is centered on their Respectful Maternity Care initiative, which provides a cyclical framework that centers the cultural, biopsychosocial, and holistic needs of Black mothers in order to reduce disparities in clinical and patient-reported measure outcomes for all birthing people.

NBEC has three projects underway to develop and validate a patient reported experience measure:

1. A Respectful Maternity Care PREM for Black Birthing people
2. A Respectful Maternity Care PREM for all Birthing people
3. A Birth Equity Measurement bundle in partnership with NCQA

Susan spoke about developing the Respectful Maternity Care PREM for Black birthing people, highlighting the measure development process, how to include those most impacted by research in the measure development dialogue, and measure dissemination strategies. The end goal is to confirm the measure’s validity, trademark it, and have it be used in clinical environments.

To develop the measure, NBEC analyzed data (from focus groups and existing research in the field) to generate questions. To test their validity, this initial set of questions were compared with the theoretical framework of the project and participants’ experiences, before being put in front of an expert panel. The next steps include translating these questions into appropriate measures for validation and doing a final round of interviews with patients.

An important part of developing a PREM is to include those most impacted by the measure. NBEC shared their experience in this area, including:

• Conducting research and partnering with leaders representing communities of color.
• Forming consistent relationships with individuals/organizations, not just seeking individuals/organizations on an ad hoc basis to fill a niche in a project.
• Being conscious about hierarchies in the dynamics of the partnership and equitably distributing funding to all involved.
• Elevating, recognizing and compensating expertise; this includes viewing patients as experts of their own body and compensating them equitably for sharing their experiences.

In the near future, NBEC will finalize and scale this measure to make it available to hospitals. Through their research, they learned about the following best practices for dissemination:

• Centering patients’ lived experiences and narratives in dissemination
• Encouraging community-based organizations and patients to lead dissemination. This includes paying for travel and conferences for patients to attend to help promote the work.
• Identifying the dissemination channels that reach the people most impacted by this work; Twitter and Instagram can be helpful.
• Identifying ways in which to include patients and stakeholders as co-authors in publications.

Below is a summary of the Learning Community’s discussion with NBEC following the presentation:

• One member highlighted the need to focus on the use of birth centers and on birthing individuals who give birth outside of the hospital in patient-reported experience measures.
• Another member queried NBEC on how they chose their research partners. NBEC shared that their relationships are built on trust and lasting relationships. For example, the NBEC/NCQA relationship took about a year to build. NBEC also makes an effort to work with Historically Black Colleges and Universities.
• A member asked how we ensure that providers are culturally trained, especially in rural areas, many of which are maternity care desserts. NBEC responded that doulas can be very helpful in providing culturally competent care, especially in rural areas where there may not be a hospital that supports maternity care. NBEC is also starting a maternity care deserts project which will look more into the issue of maternity care in rural areas.
• A member was curious how NBEC is thinking about the scope of maternity care (such as doula support, lactation, nutrition) in their maternity bundle. In an ideal world, NBEC shared the bundle would encompass a birthing person’s experience from onset of reproductive age to post-menopause, but funding requires the lead organization to choose a set period. Therefore, they are only looking at the birth and delivery experience.

If you have any further questions, please contact Susan Perez (sperez@birthequity.org), Afua Nyame-Mireku (afua@birthequity.org) or their research team (research@birthequity.org).