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Infant Mortality is About More Than The Data: It’s About People

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A mother holding a baby and smiling.

In public health, we are often looking at data and using it to inform action—from creating respiratory dashboards to conducting community health assessments. We also know that behind every statistic are real people, and their voices are essential in our work. Learn how some of our stillbirth and infant loss staff have been making improvements to center people with lived experience in their work. 

What is FIMR?

FIMR stands for Fetal & Infant Mortality Review. We partner with medical providers, local organizations, and community members to look case-by-case at experiences of stillbirth and infant loss in Dane County. (For FIMR, stillbirth and infant loss is the loss of any baby from 20 weeks gestation up to 1 year after birth.) All cases are made anonymous. The goal of FIMR is to identify ways health care and other systems can take action to prevent future loss in Dane County.

In both Dane County and the U.S., Black babies are more likely to die before their first birthdays than babies overall. In Dane County, we’ve also seen rates among Latino babies increase. The causes of these inequities are complex and linked to upstream causes like racism, medical bias, and wealth inequity. Stillbirth and infant loss is often the product of many systems failing families, especially BIPOC families, and those system failures can be hidden by numbers. Here’s what one FIMR member had to say: 

Inviting people with lived experiences bridges those gaps in humanity that statistics can create…They make the people who enact policies to think about the consequences of those policies more deeply.

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FIMR participant

Why is it important to include people with lived experience?

Centering people with lived experience is vital because we can:

  • Focus on systems solutions, not just individual ones
  • Hear how families experienced their loss and how they were supported or not supported by health and community services
  • Highlight experiences of bias or mistreatment that aren’t captured in medical records
  • Identify areas of improvement that might be otherwise unnoticed by health systems

Here’s what one FIMR member had to say about how including people with lived experience shifted their perspective: 

I have noticed a shift in the dialogue from an overly-medicalized analysis of a case to wondering together what the mothers and families who were impacted have experienced… I have noticed myself move into a space of greater listening and learning, realizing that there is important information, that I do not have direct access to, that is critical to my capacity to do my work most effectively.

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FIMR participant

How did we improve our work?

When we work in close partnerships, we want to make sure everyone can attend and be heard. That might be doable for medical professionals, who can take off during work time to attend coalition meetings. But for community members, it’s not so easy to spend a ton of unpaid time working with us.

That’s why we worked with two women who were already a part of FIMR to connect with people with lived experience to join FIMR. We also compensated people with lived experience for their time. Here’s what one person had to say about the change: 

The opportunity to be compensated for my involvement has made a significant difference for me as a Black woman with lived experience. It acknowledges the value of my time, expertise, and perspective, while also removing potential barriers to participation such as financial constraints. This compensation reinforces the importance of diverse representation and ensures that individuals from all backgrounds can actively contribute to improving maternal and infant health outcomes.

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FIMR participant

What’s next?

We’re continuing to build on our coalition work in FIMR and drive more local action. You can learn more about our program on our website. If you’re interested in connecting with us, email health@publichealthmdc.com.

This content is free for use with credit to Public Health Madison & Dane County .

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