The fetal and infant mortality review (FIMR) process is a community-oriented strategy focused on improving the health services systems for pregnant persons, infants, and their families. FIMR helps communities to understand and change systems that contribute to racial disparities in birth outcomes. FIMR equally values the medical and social services delivery records and the personal narratives of families who have suffered a fetal or infant loss when creating the de-identified case summaries to be reviewed by teams. A two-tiered process, FIMR uses a multidisciplinary Case Review Team (CRT) as the information processor and the Community Action Team (CAT) as the action arm of the process. Pediatricians are vital to both teams, helping to bring about systems change to improve maternal and child health. This paper examines how the well-established FIMR team serving Indianapolis (Marion County, IN) worked to build the capacity of its CAT to address racial disparities in birth outcomes through 5 distinct steps: focus on the primary causes of local fetal or infant mortality, focus on neighborhoods with the highest stable fetal or infant mortality rates, designation of a CAT leader, creation of a culture of regular CAT meetings inclusive of a health-equity skill building curriculum, and inclusion of Grassroots Maternal and Child Health Leaders on the CAT. This paper demonstrates how the synergy between local organizations and community members can effectively address racial disparities in birth outcomes.
Black families across the education and income spectrum are at significantly greater risk when compared with other races and ethnicities for suffering an adverse birth outcome (eg, infant or maternal mortality, preterm birth, low birth weight infant).1,2 Racial disparities in birth outcomes have existed since the onset of race-based statistics, even in the presence of improved medical practice and technology, social services delivery, and home visiting programs.3 Numerous studies reveal how structural, institutional, and interpersonal racism contribute to inequitable social systems, further contributing to these disparities.4 Because racial disparities arise from social, organizational, and cultural systems, addressing racial inequity requires a diverse interdisciplinary team of health care and social service professionals, social scientists, media, and arts professionals working in equitable partnerships with community members and organizations. Bringing about sustainable systemic change requires that this team monitors the root and medical causes of adverse birth outcomes and translates findings into organizational, community, and public policy action to eliminate racial disparities in infant mortality. Fetal and infant mortality review (FIMR) structure and process incorporates health and social services findings, personal narratives, and community members and organizations to understand and change systems that contribute to racial disparities in birth outcomes. Three components of the FIMR process are especially valuable in discovering and addressing community factors related to fetal and infant health disparities: (1) the diverse coalition or community partnership building component of the process, (2) inclusion of the voice of local families who have lost their babies, and (3) FIMR actions based on decisions pertaining to the whole community and the families who live there.5,6 Through this article, we will highlight the different roles that pediatricians can play in FIMR and Community Action Team (CAT) processes.
The FIMR process is intended to operate at the local level, ensuring families and systems access to details surrounding fetal or infant death and serve as a continuous quality improvement process for systems that affect birthing families. The FIMR process was initiated by the Maternal and Child Health Bureau of the Health Resources and Services Administration in the mid-1980s. Initially, its community-oriented strategy focused on improving health services systems for pregnant persons, infants, and their families. As research over the past 2 decades revealed the social drivers of birth outcomes and the human rights-based approach to maternal and child health,1,7 the FIMR process grew to monitor health services and socioeconomic systems that influence birth outcomes and help build their capacity to prevent fetal and infant death. Throughout its history, a unique and defining feature of the FIMR process is the inclusion of both medical and social services data, and parental and family interviews. FIMR programs describe parental family interviews as a key strategy to understand how women of color’s lived experience can influence maternal and child health outcomes.8,9 The bereaved parents’ personal narratives provide uniquely insightful information about their experiences before, during, and after the death of their babies. Although communities benefit from hearing about the experiences childbearing parents and families have with service delivery systems throughout the interview, parents themselves often find value in sharing their personal stories of loss. Many are grateful for the opportunity to talk about the baby that died and to honor their memories by sharing stories or mementos. This can help facilitate the bereavement process. Parents and families may find the idea they are helping other families and possibly preventing other losses very healing.9
These insights, not available from any other source, are critical in the development of effective, relevant community interventions to improve the health and wellbeing of parents, infants, and families.
The FIMR Process and Roles for Pediatricians
The FIMR process consists of 5 steps that use data to stimulate systems change at local and national levels to prevent fetal and infant mortality. These steps nicely align with the steps associated with the health equity process.10 During the first step of the FIMR process, multiple data sources, such as medical records, social service records, hospital records, and coroners' reports, are coalesced and reviewed by FIMR staff to understand the events leading up to and after a fetal or infant death. The staff is guided in reviewing records using a FIMR data collection form developed by the National Center for Fatality Review and Prevention (National Center).11 This surveillance system, the National Fatality Review-Case Reporting System, offers a comprehensive picture of the context of the death and the time leading up to it. Insightful notes from pediatricians who interacted with the infant and family lend the staff valuable insight into the possible causes of a fetal or infant death.
Second, a voluntary parental interview is conducted by skilled FIMR staff. Information from the interview reveals the parents’ and families’ experiences with the health care system, including robust examinations of access, equity, chronic and acute life stressors, and adverse experiences in childhood and across the life course. These stories reveal families’ experiences with neglect, lack of information from providers, disrespect, and even medical and obstetric interventions without explanation. For example, narratives from Black birthing persons reveal the ways racism, in all its forms, impacts their pregnancies, labors, births, and postnatal encounters.12 It is through the combination of these first 2 steps that inequitable social and economic systems, programs, policies and/or environments are identified that may contribute to poor birth outcomes.
Third, FIMR staff present the quantitative and qualitative findings in a deidentified case summary to the FIMR Case Review Team (CRT). This team comprises healthcare providers, social service providers, community organization leaders, and community members. It is vital to have a pediatrician on this review team to foster a complete understanding of the reasons behind a death. This team deliberates on each loss and comes to a consensus on the present and contributing factors for each fetal and infant death.
Fourth, FIMR staff coalesce data from the CRT process and present the findings to the FIMR’s CAT. This team is also interdisciplinary and broader in its scope of representation; it consists of individuals in decision-making roles to facilitate changes to policy and practice. The CAT is charged with building the capacity of community organizations and members to address the root and medical causes associated with fetal and infant mortality within their neighborhoods. Dialog between the local FIMR staff, the CRT, and the CAT is foundational in creating strategies and associated implementation plans to prevent fetal and infant mortality. Having pediatricians participate on the CAT is helpful in multiple ways. Pediatricians can help lead the work of the CAT to bring about systems change to improve maternal child health (MCH)13 and disseminate the findings and actions of the FIMR and CAT to fellow pediatricians across the community. In addition, pediatricians have an opportunity to learn from other providers, families, and community members about inequitable systems and actions to promote health equity. Pediatricians can act on FIMR findings in their own individual practices. For example, FIMR teams consistently identify maternal mental health issues as contributors to stillbirth and infant death. St. Joseph County, Indiana identified that 55% of infant deaths and 32% of fetal deaths reviewed by their FIMR team from 2015 to 2019 had families that would have benefited from mental health interventions.14 Pediatric primary care providers are in a good position to recognize the signs of postpartum depression because pediatricians are in frequent contact with parents of infants. Reinforced by FIMR findings, pediatricians should offer routine screening for postpartum depression into well-child visits at 1, 2, 4, and 6 months of age.15
The fifth step equips the National Center, a project of the Michigan Public Health Institute, to help community collaborators catalyze local and state impact. Deidentified data collected from participating local FIMR teams are entered into National Fatality Review-Case Reporting System. This is hosted by Michigan Public Health Institute and is a comprehensive, web-based data collection tool that supports the FIMR process. Local and state staff have the ability, with the National Center's support, to aggregate data from across FIMRs to understand patterns and report on the wide range of factors contributing to mortality in the local community, states, and nationally and recommend systems change action to prevent future fetal and infant loss.
Steps to Build the Capacity of a Community Action Team to Advance Health Equity
We examined how the well-established FIMR team serving Indianapolis (Marion County, IN) worked to build the capacity of its CAT to address racial disparities in birth outcomes utilizing the following actions.
Infrastructure Development
The following infrastructure building steps were taken to increase the CAT’s impact: (a) Focus on the primary causes of local fetal or infant mortality; fetal or infant data compiled by the FIMR staff using the Perinatal Periods of Risk Model16 revealed that action needed to focus on maternal health or prematurity and infant health components of the Perinatal Periods of Risk Model. Thus, the CAT was divided into 2 workgroups: 1 to address maternal health (voluntarily led by an obstetrician/gynecologist) and 1 to address unsafe sleep (voluntarily led by a pediatrician). (b) Focus on neighborhoods with the highest stable fetal or infant mortality rates; based on data compiled by health department MCH epidemiologists, it was revealed that 13 zip codes within the city or county had persistently high mortality rates (defined as above 7 pr 1000 live births over 4 years). These zip codes became the focus of the CAT’s work. (c) Designate a CAT leader: the local health department used funding to support a local MCH professor with extensive experience in community engagement strategies to address racial disparities in birth outcomes as the CAT facilitator. (d) Create a culture of regular CAT meetings: the MCH leadership of the local health department and facilitator scheduled quarterly CAT team meetings and notified members well in advance and established a regular meeting agenda consisting of a FIMR update, workgroup reports, skill-building sessions, regular reminders of the 4 steps to health equity,10 and web links to evidence-based programs to help members easily incorporate these into their practice.
Include Grassroots MCH Leaders on the Community Action Team
Around the world, grassroots leaders have successfully worked to address social systems that underlie poor MCH outcomes.17 Grassroots leaders are an asset to the mission of advancing health equity. They provide an in-depth, lived experience-based understanding of the social and economic inequities underlying disparities and ideas about solution strategies to address community priorities. Riley Children’s Foundation funded a statewide Grassroots Maternal and Child Health Leadership training initiative to prepare women to be community leaders, activists, and developers focused on changing inequitable social systems underlying poor birth outcomes.18 All participants underwent a basic training curriculum,19 learned narrative storytelling,20 and were mentored for at least 1 year in their community leadership development. In total, 35 Grassroots MCH Leaders (GMCHLs) representing 10 Indiana counties were trained and mentored. Of the 35 leaders, 12 identify as non-Hispanic white, 3 identify as Hispanic (bilingual Spanish and English), 18 identify as African American, and 2 identify as Black immigrants from West Africa (bilingual French and English). At the time of training, 18 of the leaders resided in the greater Indianapolis region.
African American GMCHLs, residing in zip codes for the CAT, were integrated into the Marion County FIMR CAT. They helped build connections between their communities and the CAT workgroup actions. For example, 6 African American GMCHLs completed training as safe sleep ambassadors for their community. They disseminated safe sleep information in areas of the city that are often difficult for healthcare services to reach. They served affordable housing communities with skill-building workshops (in English and Spanish) and safe sleep kit distribution. They partnered with agencies that serve persons with substance use disorders, ensuring that they have access to safe sleep supplies.
The GMCHLs worked to inform the CAT workgroups of issues facing their local neighborhoods. For example, they stressed the need for easily accessible prenatal care without judgment about risky health behaviors. This effort contributed to the process of the maternal health team creating a free prenatal clinic within a welcoming church located in a zip code with some of the highest fetal and infant mortality rates.
Finally, the GMCHLs helped to translate the findings of the FIMR CRT and the work of the CAT into policy recommendations for state leaders to address racial disparities in birth outcomes. Several of the GMCHLs helped catalyze the state legislators’ work to create an MCH Caucus for the Indiana State House. This Caucus and the Black Caucus have a priority of addressing structural racism to improve birth outcomes. At the request of some of the legislators, 2 of the GMCHLs on the CAT created a table to show how structural racism leads to poor MCH outcomes and policy changes needed to undo this structural racism (Table 1). The GMCHLs were guided in creating this table using a published framework,21 which highlights the social constructs through which structural racism works to produce poor birth outcomes. They selected some of the pathways discussed and then worked with others in their communities to learn of policy actions that would help improve MCH.
Grassroots MCH Leaders Recommended Policy Actions to Dismantle Racism
| Pathways . | Recommended Policy Action . |
|---|---|
| Political exclusion | Increase civics training in neighborhoods with large percentages of Black and Brown and immigrant citizens, for the entire family unit. |
| Economic injustice and social deprivation | Develop quality housing options with a range of services embedded in the housing structure (childcare, primary health care, adult education) for people of color in safe neighborhoods. |
| Raise the hourly minimum wage to at least $15. | |
| Expand rehabilitation and job training for women leaving incarceration, and provide safe, secure and stable housing for women who are leaving incarceration. | |
| Increase funding to schools (daycare, preschool, K–12) in neighborhoods with lower socioeconomic outcomes. | |
| Environmental and occupational conditions | Provide pregnancy accommodations in the workplace that support healthy birth outcomes. |
| Provide paid family leave for all people. | |
| Strategic community development focusing on access to food that will provide a balanced diet, physical activity options, safety in community, positive social support mechanisms. | |
| Improve public transport (bus stops, routes) and street lighting in neighborhoods that have lost or never had access to safe public transportation. | |
| Psychosocial trauma | Police education and reform, including cultural sensitivity training, community policing and mental health support, emphasizing community women’s participation in community safety promotion and domestic violence prevention and treatment. |
| Inadequate health care | Extend Medicaid coverage for 12 mo postpartum to all women. |
| Establish primary health care and mental health clinics that are accessible to people in low-income areas. | |
| Support development of community health workers making a living wage. |
| Pathways . | Recommended Policy Action . |
|---|---|
| Political exclusion | Increase civics training in neighborhoods with large percentages of Black and Brown and immigrant citizens, for the entire family unit. |
| Economic injustice and social deprivation | Develop quality housing options with a range of services embedded in the housing structure (childcare, primary health care, adult education) for people of color in safe neighborhoods. |
| Raise the hourly minimum wage to at least $15. | |
| Expand rehabilitation and job training for women leaving incarceration, and provide safe, secure and stable housing for women who are leaving incarceration. | |
| Increase funding to schools (daycare, preschool, K–12) in neighborhoods with lower socioeconomic outcomes. | |
| Environmental and occupational conditions | Provide pregnancy accommodations in the workplace that support healthy birth outcomes. |
| Provide paid family leave for all people. | |
| Strategic community development focusing on access to food that will provide a balanced diet, physical activity options, safety in community, positive social support mechanisms. | |
| Improve public transport (bus stops, routes) and street lighting in neighborhoods that have lost or never had access to safe public transportation. | |
| Psychosocial trauma | Police education and reform, including cultural sensitivity training, community policing and mental health support, emphasizing community women’s participation in community safety promotion and domestic violence prevention and treatment. |
| Inadequate health care | Extend Medicaid coverage for 12 mo postpartum to all women. |
| Establish primary health care and mental health clinics that are accessible to people in low-income areas. | |
| Support development of community health workers making a living wage. |
Framework for this table was adapted from: Bailey ZD, Krieger N, Agenor M, Graves J, Linos N, Bassett MT. Structural racism and health inequities in the USA: evidence and interventions. Lancet. 2017; 389(10077):1453–63. https://doi.org/10.1016/s0140-6736(17)30569-x.
Implement a CAT Skill-Building Curriculum
Each CAT meeting contained a skill-building session led by the facilitator to help the team members and their respective organizations adopt a health equity approach to improving birth outcomes. Table 2 identifies some of the different training sessions that occurred over 5 years and the skill-building practices offered. These sessions contributed to a greater, uniform understanding of these principles across the CAT membership. This helped create a common language and set of expectations for actions. An example of a successful outcome from these sessions was the adoption of the RaceWorks22 program by the county’s Women, Infant and Children’s office to adopt practices that undo all types of racism within their programming.
CAT Skill Building Sessions
| Topic . | Skill Building Activity . |
|---|---|
| The 5 key steps to community-based health promotiona | Use the actions below to implement a community-based infant mortality reduction plan: |
| Using a primary prevention strategy | |
| Utilizing multiple community settings | |
| Developing multiple communication strategies | |
| Involving community leaders (positional, grassroots) | |
| Developing plan to engage diverse array of community members. | |
| The 4 steps to health equityb | Implement health equity plan to address disparities in birth outcomes |
| Identify disparities | |
| Identify social inequities | |
| Develop new policy, systems, procedure to address inequities. | |
| Establish short- and long-term monitoring, evaluation, and reassessment plan | |
| The social determinants of healthc | Discuss how each determinant can impact birth outcomes |
| The social ecological model of health promotiond | Develop an intervention at each level of the social ecological model to reduce infant mortality rates |
| Intergenerational communication strategiese | Develop a communication strategy targeting each generation to help improve a MCH problem (example: promote breastfeeding) |
| Human rights based approach to healthf | Develop a strategy to implement the 2 elements of a human rights approach into your organizations work: |
| Develop capacity of duty bearers to meet their obligations. | |
| Empower rights holders to claim their rights. | |
| RaceWorks approach h to undoing racismg | Apply the RaceWorks approach in your organization to undo all forms of racism in the provision of MCH services. |
| Advancing women’s empowerment as a means to improve birth outcomesh | Develop strategies aimed at each of the women’s empowerment variables below, to improve birth outcomes: |
| Reduce domestic violence. | |
| Improve financial access. | |
| Promote living wage employment. | |
| Develop safe communities for women. | |
| Provide access to quality education across the life span. | |
| Promote women in government. | |
| Narrative storytellingi | Learn the process to elicit and understand narrative stories from mothers: |
| Story structure | |
| Using data to enhance a story. | |
| Jazzing up a story with metaphors, analogies | |
| The editing process | |
| Different lenses to examine a story: rhetorical, intersectional, cognitive |
| Topic . | Skill Building Activity . |
|---|---|
| The 5 key steps to community-based health promotiona | Use the actions below to implement a community-based infant mortality reduction plan: |
| Using a primary prevention strategy | |
| Utilizing multiple community settings | |
| Developing multiple communication strategies | |
| Involving community leaders (positional, grassroots) | |
| Developing plan to engage diverse array of community members. | |
| The 4 steps to health equityb | Implement health equity plan to address disparities in birth outcomes |
| Identify disparities | |
| Identify social inequities | |
| Develop new policy, systems, procedure to address inequities. | |
| Establish short- and long-term monitoring, evaluation, and reassessment plan | |
| The social determinants of healthc | Discuss how each determinant can impact birth outcomes |
| The social ecological model of health promotiond | Develop an intervention at each level of the social ecological model to reduce infant mortality rates |
| Intergenerational communication strategiese | Develop a communication strategy targeting each generation to help improve a MCH problem (example: promote breastfeeding) |
| Human rights based approach to healthf | Develop a strategy to implement the 2 elements of a human rights approach into your organizations work: |
| Develop capacity of duty bearers to meet their obligations. | |
| Empower rights holders to claim their rights. | |
| RaceWorks approach h to undoing racismg | Apply the RaceWorks approach in your organization to undo all forms of racism in the provision of MCH services. |
| Advancing women’s empowerment as a means to improve birth outcomesh | Develop strategies aimed at each of the women’s empowerment variables below, to improve birth outcomes: |
| Reduce domestic violence. | |
| Improve financial access. | |
| Promote living wage employment. | |
| Develop safe communities for women. | |
| Provide access to quality education across the life span. | |
| Promote women in government. | |
| Narrative storytellingi | Learn the process to elicit and understand narrative stories from mothers: |
| Story structure | |
| Using data to enhance a story. | |
| Jazzing up a story with metaphors, analogies | |
| The editing process | |
| Different lenses to examine a story: rhetorical, intersectional, cognitive |
a Clinical and Translational Science Awards Consortium and the Community Engagement Key Function Committee. (2011). Principles of Community Engagement, second Edition. Bethesda, MD: National Institutes of Health.
b Braveman P, Arkin E, Orleans T, Proctor D, Plough A. What is health equity? And what difference does a definition make? Robert Wood Johnson Foundation; 2017. Accessed March 10, 2024. https://nccdh.ca/images/uploads/comments/RWJ_Foundation_-_What_Is_Health_Equity.pdf.
c U.S. Dept. of Health and Human Services. Healthy People, 2030. Office of Disease Prevention and Health Promotion. (2021). Accessed March 10, 2024. https://health.gov/healthypeople/objectives-and-data/social-determinants-health.
d Centers for Disease Control and Prevention. The socio-ecological model: a framework for prevention. National Center for Injury Prevention and Control, Division of Violence Prevention. 2021. Updated January 18, 2022. Accessed March 10, 2024. https://www.cdc.gov/violenceprevention/about/social-ecologicalmodel.html.
e Bialik K, Fry R. Millenial life: how young adultood today compares with prior generations. Pew Research Center. 2019. Accessed March 10, 2024. https://www.pewresearch.org/social-trends/2019/02/14/millennial-life-how-young-adulthood-today-compares-with-prior-generations-2/.
f United Nations Human Rights Office of the High Commissioner. Summary reflection guide on a human rights-based approach to health: application to sexual and reproductive health, maternal health and under-5 child health. 2015. Accessed March 10, 2024. https://www.ohchr.org/Documents/Issues/Women/WRGS/Health/RGuide_HealthPolicyMakers.pdf.
g Center for Comparative Studies in Race and Ethnicity. RaceWorks toolkit. Stanford University School of Humanities and Sciences. Center for Comparative Studies in Race and Ethnicity. 2020. Accessed March 10, 2024. https://sparqtools.org/raceworks.
h Georgetown Institute for Women, Peace and Security. Women are critical to achieving sustainable peace. 2021. Accessed March 10, 2024. https://giwps.georgetown.edu.
i Irby A, Macey E, Levine N, Durham JR, Turman, Jr. JE Grounding the work of grassroots maternal and child health leaders in storytelling. Health Promot Pract. 2024; 25(1): 127–136. https://doi.org/10.1177/15248399221151175.
Conclusions
The FIMR process is uniquely suited to identify and address racial disparities in birth outcomes. It can develop a thorough understanding of the medical and root causes of fetal and infant mortality. It equally values the medical and social services delivery records and the personal narratives of families who have suffered a fetal or infant loss. These rich data are reviewed by a diverse team of health providers, social service providers, and community members, who collectively review and deliberate each death. Findings from this team are relayed to a CAT charged with bringing about community and systems changes to prevent future fetal and infant deaths. We examined the process by which the Marion County FIMR built the capacity of its local CAT to address racial disparities in birth outcomes. Over 5 years, it implemented infrastructural changes, included GMCHLs, and delivered skill-building learning sessions for its members.
This FIMR CAT experienced significant growth in membership over the 5-year period, consistency in attendance, and success in helping reduce racial disparities in birth outcomes. Although no 1 effort can claim success with decreasing infant mortality rates, it is significant to note that the city’s overall infant mortality rate and Black infant mortality rate declined after the CAT implemented these changes. For example, the 2020 rates were at historic lows.23 The collective impact of multiple organizations and individuals working to address disparities in birth outcomes contributed to decreased infant mortality rates in zip codes that persistently had high infant mortality rates. The FIMR process provides a synergy between all the local organizations and community members to effectively address racial disparities in birth outcomes. Although the work is far from complete, a coordinated FIMR action with a shared understanding of principles can help a city bring about greater health equity for birthing persons, babies, and families. Pediatricians can play important roles during the FIMR and CAT processes to help inform steps that will advance health equity for families and infants.
Acknowledgments
Thank you to Teri Conard, RN, MSN and her FIMR team at the Marion County Public Health Department for all their work in helping organize CAT meetings, and to all the CRT and CAT members who work diligently for the health and well-being of infants and their families.
Ms Joy and Ms Fournier both helped conceptualized the manuscript and wrote the section on the fetal and infant mortality review process; Dr Turman, Jr wrote the initial manuscript, with a focus on the introduction, section on the capacity building of the local Community Action Team, and the conclusion; he worked through regular meetings with the other authors to make corrections and finalize the manuscript for submission; and all authors critically reviewed and revised the manuscript, led the process of responding to reviewers, approved the final manuscript as submitted, and agreed to be accountable for all aspects of the work.
References
Competing Interests
CONFLICT OF INTEREST DISCLOSURES: The authors have no conflicts of interest to disclose.
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