Patient and Community Centered Approaches to Sepsis Among Birthing People

Abstract

Sepsis is the second leading cause of maternal death in the U.S. For racial and ethnic minoritized birthing people, especially those who are Black and living in underserved communities, labor and postpartum are particularly vulnerable risk periods. To reduce sepsis-related morbidity and mortality and promote maternal health equity, community co-led, and co-designed interventions are urgently needed. In this commentary, we introduce the design and goals of our EnCoRe MoMS study as an exemplar for employing community based participatory research principals iteratively throughout the research process and integrated across all study aims. We also highlight our early lessons learned and recommendations for best practices. Our novel model and ongoing work have implications for scaling academic-community research partnerships for other causes of severe maternal morbidity and maternal health equity nationally.

BACKGROUND

Introduction to Maternal Health Disparities and Obstetric Sepsis

There are staggering disparities among minoritized birthing people in the U.S. Although only accounting for 14% and 23% of the total births, 41.4% of all pregnancy-related deaths in New York City (NYC) in 2022 were among non-Hispanic Black people followed by 31.1% in Hispanic people.¹ Black people also have the highest severe maternal morbidity (SMM) rate (457.2 per 10,000 births).² Neighborhoods with >30% poverty have higher SMM rates vs. low poverty (337.5 vs. 247).²

These disparities are evident across most all causes of SMM and their consequences, including sepsis. Obstetric sepsis is a life-threatening condition defined as organ dysfunction resulting from infection during pregnancy, childbirth, post-abortion, or the postpartum period.³ For the purposes of this review, obstetric sepsis refers to sepsis (from all causes, including non-obstetric such as pneumonia) in pregnant or postpartum patients, which was previously described as maternal sepsis. Sepsis and infection, is the leading cause (27.5%) of pregnancy-related deaths in the U.S. in 2020.⁴ In a retrospective cohort study using the 2016–2020 Nationwide Readmissions Database, 7.9% of postpartum readmissions had a sepsis diagnosis, 24.4% of maternal deaths at delivery and 38.4% at postpartum were associated with sepsis diagnoses.⁵ Obstetric sepsis disproportionately impacts Black people compared to other groups.⁶ Sepsis-related morbidity and mortality are largely preventable, yet few, if any, studied interventions address obstetric sepsis risk across the pregnancy continuum.^7,8

The effects of social drivers of health (SDoH) on obstetric morbidity, underscores the merit of implementing obstetric sepsis interventions throughout the perinatal arc to address nuanced factors related to sepsis risk. Prolonged exposure to adverse SDoH and stress is associated with psychological and biological dysfunction and is disproportionately experienced by people of social disadvantage.^9–12 Toxic stress is a known contributor to higher stillbirth, miscarriage, and preterm birth rates among Black, Hispanic, and low income people.^9–13 These groups are more likely to have pregnancy complications and higher comorbidity-related mortality in childbirth.^14–16 Yet little evidence exists on how SDOH and toxic stress shapes sepsis risk among birthing people, their access to quality care across the pregnancy continuum, and interventions to redress it.^14–17 This is a salient gap given that maternal health inequities persist even after controlling for individual and hospital factors.¹⁸

The Need for Multi-level Community Engaged Approaches

Multi-level approaches rooted in lived experience and community are required to reduce obstetric sepsis disparities. Black and Hispanic people report higher rates of disrespect and mistreatment in the antepartum setting,^19–20 provider bias, and care avoidance due to discrimination.²¹ These experiences preclude shared decision-making and impact treatment.²² While hospital-community based organizations (CBOs) partnerships, community health workers (CHW), and doulas^19,23 hold promise, interventions have largely failed to account for lived experiences of birthing people and community perspectives on barriers. Our team hypothesizes that an obstetric sepsis care model that accounts for these critical dimensions will improve management of the complex condition and the factors that underlie it, resulting outcomes, and overall patient- and community-centered approaches to advance maternal health equity.

Community-based participatory research, (CBPR) characterized by strong bi-directional relationships built on trust and fostered by joint decision making, is rising as the gold-standard for health-related research in settings and systems beyond the community.²⁴ Progressive orientations to research, otherwise described as emancipatory, originated in the Global South, in collaborative research groups and community-based efforts outside of the academy. The legacy of Freirean approaches to research (i.e., Southern traditions of CBPR) have more recently been embraced in the academy and in health care systems to challenge colonizing practices in research and medical practice and recognize cultural and social dimensions of economic stratification, which impact health outcomes.²⁵ This shift is reflected in emerging priorities in national and international health agencies such as the National Institutes of Health (NIH) and Patient-Centered Outcomes Research Institute (PCORI).²⁴

And yet cultivating adequate trust to build long-term sustainable partnerships is a longstanding barrier to successful implementation of CBPR, especially in health systems and in traditional scientific contexts. Structural racism and historical medical mistreatment of minorities in research and clinical settings perpetuate community mistrust and result in a lack of participation in research in both participant and community researcher roles. Yet, disparities in maternal health outcomes that racial and ethnic minority birthing patients face, add even greater importance to developing trusting community-academic partnerships guided by patient centered priorities.²⁶ Research that addresses end-user priorities fosters consistent, active participant engagement. Also, active participation in intervention design positively affects content awareness and related decision making outside of the research environment.²⁷

Multi-collaborator diversity in research, especially in obstetric studies, has been an under-utilized vehicle to advancing health equity, as it considers both medical and social sectors, addressing social drivers of health and risk factors for severe maternal morbidity. Interventions that are assessed through a diverse multi-collaborator team have the potential to ‘accelerate’ maternal health, as has been made evident by interventions throughout the Global South.²⁸ When looking along the pregnancy continuum, in the transition to postpartum, the CBPR research model is a viable way to engage multiple stakeholders and likewise support maternal health outside of a clinical setting as community stakeholders are seen as not only integral, but necessary, to an effective research process and are appropriately engaged as members of the multi-stakeholder research team.

PROJECT OVERVIEW

To address the above-described principles and opportunities, our collaborative team has launched the NICHD-funded study, EnCoRe MoMS: Engaging Communities to Reduce Morbidity from Maternal Sepsis. This article outlines the impetus for, the infrastructure and activities of, and early lessons learned from EnCoRe MoMS. By leveraging CBPR, our extensive multi-sector partnerships, and our diverse community leadership advisory board (CoLAB), we are addressing three highly related aims to: (Aim 1) Develop, implement, and evaluate a community-informed obstetric sepsis bundle; (Aim 2) Create a rich electronic health records (EHR) database to develop algorithms to optimize prediction of sepsis around birth and postpartum; and (Aim 3) Conduct a co-design process and qualitative study to explore the experiences, needs, and perceived solutions for maternal care continuity, sepsis risk prevention, and promotion of equity postpartum. A multi-pronged and comprehensive approach was strategically employed to adequately address sepsis risk across the perinatal care continuum.

Defining the Research Setting and Priorities

Our team and study is based in New York City, with the project focused on Northern Manhattan, and with the Columbia University Irving Medical Center (Columbia) functioning as the administrative site for this multi-site grant, and with the Sloane Hospital for Women and Morgan Stanley Children’s Hospital in Washington Heights, Columbia Allen Hospital in Inwood and Health & Hospital Systems Harlem Hospital in Central Harlem and Lincoln Hospital in the South Bronx, serving as a complementary set of four hospitals with a diverse patient population reach. Annually, 8,400 deliveries are performed across these hospitals with 25% Black, 32% White, 10% Asian, 33% Other; and 47% Hispanic; 40% Not Hispanic, 13% Unknown (2021). In NYC, the SMM rate is more than double the national average with higher SMM rates for Black (3×), Hispanic (1.8×), and Asian (1.3×) individuals than for White individuals. 74% of all NYC pregnancy-related deaths are considered preventable, including 72% of deaths among Black birthing patients but only 43% of deaths among White birthing patients.²⁹ Mental health and cardiovascular conditions, considered 100% and 76% preventable, respectively, were the leading causes of death for Black and Latinx birthing patients.³⁰

Our priorities for our project and grant application were informed by the 2019 New York-Presbyterian (NYP, the hospital system affiliated with our university) Community Health Needs Assessment, which highlighted Northern Manhattan as a high-disparity neighborhood and identified reducing maternal morbidity, mortality, and inequities as a primary objective. The 2022–2024 Community Health Needs Assessment continues to emphasize these priorities, especially in Black communities where disparities are evident even when controlling for protective factors. Discrimination and structural racism are also mentioned, and factors specifically linked to pregnancy-related health risks.³¹ The presence of doula care was reported as being correlated with reduced risk of Cesarean delivery, postpartum depression, preterm birth, and having a low birthweight baby. Thus, multilevel approaches rooted in lived experience and community are essential to reduce obstetric sepsis disparities.

Defining Our Community Co-Leadership

As a testament to our dedication to bi-directional community collaboration, Northern Manhattan Perinatal Partnership (NMPP), a Maternal Child Health Life Course Organization dedicated to improving birth outcomes and reducing disparities, serves as co-lead for this study. NMPP annually serves 800 birthing people (55% are Latina, 40% Black, 90% SNAP/WIC eligible), and co-administers the community health worker (CHW) and postpartum doulas programs with New York Presbyterian and Columbia. In alignment with our project ethos, we leveraged the validated “Co-designing for Equity” framework as the foundation for this study’s approach and operations. This framework was developed by another study partner, Black Women’s Blueprint’s (BWB), an organization working in partnership with mental health and obstetric providers to build racial equity in perinatal responses.

These partnerships have identified the following characteristics to be overall project priorities: intentionality, reflexivity, humility, and trust-building through iterative community engagement. The framework guides all components of our research agenda, establishes the process of collaboration, provides a platform for ongoing community engagement, and serves as a research accountability mechanism. Key principles and priorities of this framework include, creating perinatal safety, defending patients’ rights and autonomy, securing access to high quality maternal health care, and validating community insight as essential to designing equitable care models.

COMMUNITY LEADERSHIP ADVISORY BOARD (CoLAB)

In partnership with NMPP and in alignment with BWB, along with an implementation of a Co-Designing for Equity framework, a Community Leadership Advisory Board (CoLAB) was also assembled with seven members representing the populations served by the four partnering hospitals, Columbia University Sloane Hospital for Women and Morgan Stanley Children’s Hospital (Columbia), NYP Allen Hospital, Harlem Hospital, and Lincoln Hospital. The goal of this advisory board is to incorporate community perspectives and priorities throughout the development of research questions, data collection instruments, and results interpretation and dissemination.

CoLAB Contributions by Aim

Aim 1: Develop, implement, and evaluate a community-informed obstetric sepsis bundle

Utilization of a safety bundle, a set of evidence-based clinical guidelines used to improve patient outcomes, has been recommended by the American College of Obstetricians and Gynecologists (ACOG),³² Society for Maternal Fetal Medicine (SMFM),³³ and California Maternal Quality Care Collaborative (CMQCC)³⁴ for obstetric sepsis advocate rapid recognition, prompt management, and evidence-based clinical guidelines.^35–37 Clinical inconsistencies have been proven to be detrimental to care quality, therefore, standardization through implementation of such bundles is imperative in reducing disparities in maternal health outcomes and improving overall care.³⁸ State-wide perinatal quality collaborative bundle components, which are considered standard of care, are comprised of 5 main components (5R’s): readiness, recognition, response, reporting, and respectful care.³⁸ Although these components have been proven to improve care, implicit bias continues to pose a risk to patient care.³⁹ Therefore, co-designing the fifth R, respectful care, with community and patient centered approaches is a meritorious pursuit.

Thus, in Aim 1, a comprehensive obstetric sepsis bundle was designed that: i) applies and optimizes standard evidence-based components of the 5R’s ii) incorporates multidisciplinary obstetric provider implicit bias training, and iii) integrates social drivers of health training and screening. To maximize respectful care in the sepsis bundle implementation and to deepen the CoLAB’s understanding of the sepsis bundle thus building capacity and amplifying their ability to provide feedback, the study team adapted and presented a comprehensive presentation on the obstetric sepsis bundle to the board. After this presentation, CoLAB members received a document detailing the bundle elements and an accompanying patient handout on obstetric sepsis. At the subsequent meeting, each of the 5 R’s was reviewed with the respective bundle elements, and the CoLAB was able to provide valuable feedback and insight to community priorities related to each “R.”

Integrating the patient’s social network as a crucial part of the postpartum care team, acknowledging culturally traditional care without alienating the birthing person, and listening and believing birthing people are all prevalent themes that emerged from the CoLAB feedback. The CoLAB also expressed that creating and standardizing space for a trauma-informed debrief between providers and patients is an important aspect of provider response. The CoLAB was also instrumental in re-designing the patient handout to be more patient centered and to allow for cross-cultural understanding (Figure 1). Updates to the handout that were directly informed from the board’s feedback included discussing sepsis prevention at the top of the page in order to lead with patient empowerment, clarifying the sepsis definition, using a less intimidating font, and changing the graphics to be more generally relatable.

FIGURE 1.

REVISED OBSTETRIC SEPSIS HANDOUT

Aim 2: Develop algorithms to optimize prediction of sepsis around birth and postpartum

In Aim 2, an EHR database was constructed with delivery admission and postpartum readmission data from 8 Perinatal Research Consortium (PRC) hospitals. Social determinants of health (SDoH) such as language, transportation, and insurance status have been widely reported as barriers to perinatal care and health care in general.⁴⁰ Therefore, we obtained publicly available neighborhood-level datasets from 5 states (NY, NJ, CT, PA, DE) that characterize indicators of SDoH from the Agency for Healthcare Research and Quality (AHRQ), the Centers for Disease Control and Prevention and the New York State Department of Health. Artificial intelligence (AI) and machine learning is being used to leverage granular EHR data and incorporate neighborhood-level datasets (SES, structural and SDoH indicators). This will allow us to predict patients at high risk for obstetric infection/sepsis during the peripartum and postpartum periods. We will also characterize the role that SDoH and variation in provider responses may play in recognition and management of sepsis.

Lastly, we note that in addition to using reliable data, AI system algorithms must be built using methods to avoid the risk of perpetuating social biases.⁴¹ Prior to collecting publicly available SDoH data to harmonize with the delivery admission EHR data, the study team presented on the AHRQ SDoH database and what each of the 6 domains consist of to the CoLAB. Each domain was reviewed, and major themes linked in existing literature to maternal health outcomes were identified. The CoLAB then helped to identify 4 domains: Socioeconomic Context, Structural Inequity, Community Context, and Healthcare Context, as priorities.

Aim 3: Conduct a co-design process and qualitative study to explore the experiences, needs, and perceived solutions for maternal care continuity, sepsis risk prevention, and promotion of equity postpartum.

A multifactorial approach to address sepsis and other preventable maternal morbidity and mortality is essential due to the range of obstacles impacting perinatal health in today’s landscape.⁴⁰ Community and patient centered methods have been proven to ameliorate intervention implementation.⁴² There is a large gap in the literature on coupling qualitative patient and community experience studies with interventions addressing obstetric sepsis, further underscoring the need for studies such as EnCoRe MoMS. For this qualitative study, the CoLAB set goals and priority domains for patient interview and community stakeholder focus group guides. The board was sent drafts of the instruments to review, and a subsequent meeting was held to thoroughly discuss them and incorporate their feedback. Feedback highlights include, to start by asking patients what went well during their pregnancy before asking about potentially traumatic complications. They also recommended that we balance sharing the severity of a sepsis diagnosis with acknowledging its low prevalence. After interviews and focus groups were completed at each site, the study team presented the initial qualitative findings to the board who corroborated that the emerging themes echoed their experiences in their respective communities.

Integrating patient and community centered approaches not only provides the necessary richness of perspectives and innovation of solutions, but it also increases the agility of the study team’s approaches and operations to iteratively learn and pivot throughout all stages of research. An exemplary scenario occurred during the patient recruitment for the in-depth qualitative interviews. We initially faced challenges in contacting patients for initial enrollment and interview scheduling. Upon posing this to the CoLAB, we were reminded of the need to reconcile our schedules with that of a new parent- specifically considering late night feeding schedules, making morning calls not ideal. Since we are sampling patients across 8 weeks postpartum, we also had to be mindful of how we approached recruiting patients for 1-week postpartum interviews. Instead of receiving many phone calls immediately after being discharged, we decided employing our inpatient clinical research team to approach the patient in person would be more patient centered and potentially more acceptable.

IMPORTANCE OF CULTURAL HUMILITY IN LANGUAGE & PRACTICE

Improving Bi-directional Communication Between Providers and Patients

We are utilizing an iterative thematic analysis process which allows us to identify emerging themes and relationships between codes, and then pose to the CoLAB and determine if our qualitative instruments are garnering the information we intended. This also allows us to compare emerging themes to the board’s experiences, perspectives and perceived solutions. Although themes will continue to evolve as we collect additional data, thus far, the importance of communication and language have been highlighted across CoLAB, birthing people, and community stakeholder participants.

Of note, medical terminology and language is centuries old, however, it is a part of our values and ethics system to challenge categories of language and to ascertain new meaning making as we design and co-design a new culture of care with patients and community members directly involved in the research. All stakeholders have expressed the importance of consistent cultural humility in communication and terminology. Patient interviews raised the desire for more communication between doctors about patients as they transfer care to a new shift of physicians to create continuity throughout medical care experience, which may ultimately affect how they perceive their medical care quality. The relationship between communication and mental health emerging from our data suggests that thorough, consistent communication between health care professionals, birthing people, and their support system that details each step of the patient’s care may aid in reducing fear and stress in birthing people.

Using Language to Dismantle Modern Practice from an Oppressive Past

The CoLAB and focus group participants emphasized culturally informed language that is person-first, non-intimidating, and that does not perpetuate the historical structural inequities found in the inception of the obstetric field. Kimberlé Crenshaw’s concept of intersectionality, which builds on the legacies of Du Bois and the Combahee River Collective⁴³, highlights how combinations of social and political identities such as race, gender, sexuality, and socio-economic status on the individual and population level create unique experiences of privilege and oppression due to economic, legal, and political systems.⁴⁴ It is evident that oppressive forces such as structural racism does impact individual experience in obstetric care. Structural racism within obstetric care settings is tied to the origins of the field, as medical racism and medical abuse and exploitation are the foundation for modern gynecology and obstetrics in the United States. Specifically, practitioners and researchers exploited Black slaves who were thought to be endowed with “obstetrical hardiness.”⁴⁵

Acknowledgement and analysis of this painful history allows us to identify and dismantle systemic remnants in modern health systems that perpetuate oppression and, resultantly, medical mistrust and poor health outcomes. Therefore, adopting cultural humility as a foundational component to clinical and investigative work is crucial. Key tenets of cultural humility include continuous self-reflection, deconstructing inherent imbalances of power between doctors and patients, developing mutually beneficial community-based partnerships, and establishing mechanisms for institutional accountability.^44,46 Language and terminology are domains where the oppressive history of obstetrics perpetuates into modern practice, this is underscored in some of the early qualitative findings. For example, “doctor” or “clinician” was favored over the term “provider”, as the focus group participants believe it perpetuates a savior complex or hierarchy of doctors over birthing people. Referring to the birthing process and the patient delivering or birthing a baby was deemed more appropriate than saying a doctor delivered a baby because the latter does not acknowledge the involvement of the birthing person. Amongst our participants, using the term cesarean birth was considered more humanizing than c-section which is more procedural.

The study team made a conscious effort to adopt these language practices and edited the qualitative instruments to reflect these preferences of our stakeholders. The team is also consciously prioritizing culturally humility and working toward cultural rigor which expands upon the tenets of cultural humility to require a complete departure from tokenism, exploitation and a hierarchy of knowledge generators to radical transparency and reconciliation. Cultural rigor creates an environment where community power, innovation, and beliefs can be fully realized for racial justice and health equity.⁴⁴

PRIORITIES IN CO-DESIGNING A COLLABORATIVE CULTURE & RESULTING STUDY

Participatory research is critical to addressing maternal health disparities, as participation is a necessary condition of improving health outcomes. Participation from community partners and members demands a leveling of power, recognizing that research takes place within a broader context of historical relations between medical institutions, universities, and communities and within a larger system of inequities.²⁵ As maternal health inequities have been structurally created and driven as a function of medical racism and malpractice, equal participation and collaboration of community members is dependent on researchers recognizing this history. Thus, our team worked to develop a culture of collaboration and a mutually beneficial working environment with the CoLAB by defining shared priorities.

In the inaugural CoLAB meeting, community co-leads from BWB and NMPP facilitated the meeting to demonstrate our intention to dismantle any inherent hierarchy between community and academic stakeholders. The co-leads also participated in all preparation meetings for the CoLAB meeting. Setting community agreements was the priority agenda item for the first CoLAB meeting during which community co-leads led a discussion on defining priorities and cultural tenets of our collaborative culture. Fostering respectful collaboration, staying engaged, and speaking your truth are exemplar agreements that were discussed. Likewise, this project has built capacity for community partners involvement in research beyond this study, including our NIH funded Maternal Health Research Center of Excellence, New York Community-Hospital-Academic Maternal Health Equity Partnerships (NY-CHAMP). Recognizing this history and building the capacity of partners helped our research be a “productive power”. As community members’ capacity to engage in the research process grew, and they gained knowledge on the issues at hand, power imbalances were challenged, and increased the ability of all collaborators to think of new possibilities, innovate practice, and question paradigms.

CONCLUSION

Conducting a CBPR study to address disparities in maternal morbidity and mortality across the perinatal arc has proven to be exemplary and a catalyst for innovation. Collaborating with our co-lead, NMPP, and the CoLAB have anchored the study, ensuring that community and patient centered priorities continuously drive all study activities. Iterative community input promotes adaptability of the research team and fosters shared decision-making. As an additional safeguard to ensure that the study team continues to adapt to the ever-changing landscape, we are working with the CoLAB to conceptualize a sustained mechanism to analyze the maternal health landscape. This idea, birthed by a CoLAB member, will formalize the collection of CoLAB expertise of the maternal health landscape in their communities, and create space for innovation to address the dynamic landscape.

The generalizability of our findings is a potential limitation. Our study’s focus on Northern Manhattan’s unique context may limit the applicability of our findings to other regions with different demographics and socio-economic conditions, requiring significant adaptation to be effective elsewhere. Also, similarly to CBPR in general, direct reproducibility can be challenging since building a foundation over sustained relationship building can take time.

The implementation and evaluation of the obstetric sepsis bundle, development of risk prediction algorithm, and the qualitative interviews and focus groups are all underway. The data from all three aims will be distilled, with the CoLAB, to create an integrative supportive care model. Our approach, rooted in cultural humility and responsive to community needs, has not only shaped our research activities, but also fostered a sustainable, equitable model for addressing obstetric sepsis. Our commitment to patient and community-centered research is underscored by the collaborative efforts described here. Though this work is on-going, we hope that this can be a scalable model for shifting the paradigm in addressing obstetric sepsis, disparities, and other primary outcomes through innovative, effective interventions that can be adapted to diverse populations, ultimately improving outcomes for all birthing people.