National health equity thought leader Jenné Johns discusses how health inequities and implicit bias in the healthcare system impact moms of color and preterm birth rates. She also shares how her own experience in the neonatal intensive care unit (NICU) motivated her to launch a virtual training academy focused on delivering health and racial equity educational programs for healthcare professionals who support the perinatal and neonatal community.
Jenné Johns, MPH, is a national health equity thought leader, author, and advocate for reducing healthcare disparities. While advocating for the needs of her son, Jenné wrote Once Upon a Preemie, the first children’s book written for parents of preemies while in the NICU. A graduate of the Disparities Leadership Program at Harvard University Medical School, Jenné has over a decade of experience advocating for policy and community changes to improve health equity and health outcomes for low-income communities. She is the President of Once Upon A Preemie and Founder of Once Upon A Preemie Academy, the first and only virtual training academy focused on delivering health and racial equity educational programs for healthcare professionals who support the perinatal and neonatal community.
The full potential of human milk has yet to be realized. Speaking of Human Milk provides healthcare professionals with information on the latest science and clinical research. Each episode features an interview with a thought leader passionate about uncovering the unknown potential of human milk or better understanding the science of neonatal nutrition.
In addition to hosting Speaking of Human Milk, Keli Hawthorne is the director for clinical research for the Department of Pediatrics at the University of Texas Austin, Dell Medical School. In her current role, she trains faculty and staff on effectively executing high-quality protocols for research. She has authored more than 40 peer-reviewed publications on neonatal nutrition.
Keli Hawthorne (KH): Hey y’all, welcome to Speaking of Human Milk, where we give you bite-size episodes on the latest science and innovation surrounding human milk. This podcast is brought to you by Prolacta Bioscience, a company dedicated to Advancing the Science of Human Milk®. I’m your host Registered Dietitian Keli Hawthorne.
Today, we are discussing a very special and important topic that’s outside of our usual topic of human milk. We are talking about the health inequities and health disparities among mothers of color and what that means for preterm births. We are so fortunate to be able to talk about this topic with Jennѐ Johns who is a national health equity thought leader, author, and advocate for reducing healthcare disparities. She has over a decade of experience advocating for policy and community changes to improve health equity and health outcomes for low-income communities. She is the President of Once Upon A Preemie and Founder of their Academy, which is the first and only virtual training academy focused on delivering health and racial equity educational programs for healthcare professionals who support the perinatal and neonatal community. We are so very happy to have you with us Jennѐ.
Jennѐ Johns (JJ): I’m happy to talk with you, Kelli.
KH: I am so excited to get to talk with you about this topic. I think it's so critical for all of us to have a better understanding of these issues and all the tremendous efforts that you're making that impacts so many families. And this is definitely the time to address these racial and other disparities head on and not to shy away from them. So I'm so happy you can be here. First, let's make sure that our listeners understand the difference between “health disparities” and “health inequities”? Can you help us understand that difference?
JJ: Sure, while these terms are often used interchangeably their meanings are different. Health disparities describe the difference in rates of health status in different population groups. The disparity is measured against the healthiest population group.
Health inequities refer to the fair distribution of health determinants, outcomes, and resources within and between segments of the population, regardless of social standing.
KH: I'm so glad that we got that under our belts and now I just really would love to hear more about you and your background, and what got you so interested in advocating for health disparities.
JJ: I've worked to understand and address health disparities my entire academic career and then my actual career. Honestly, before I even knew I was doing work to close gaps based on health outcomes. I knew I was passionate about serving my community, a low-income community in West Philadelphia to make sure that the parents and the grandparents in my community could live as long and healthy life as possible. This work started during my junior year in undergraduate school. The first half of my career focused on healthy food access to reduce rates of adult and childhood obesity. I did all types of creative things at the community level to reduce disparities. For example, I worked as a nutritionist, and a health educator and did body mass index assessments at local health fairs, churches and YMCAs. I also begged the pastor of my church to allow me to do a health and nutrition segment each Sunday morning. At that time, no one wanted to hear about healthy eating in the African American Baptist Church. From there, I work with nonprofit organizations doing lots of policy and advocacy work to increase healthy, fresh, and affordable food and inner cities across the United States. Then the second half of my career is where I started doing health equity work within the commercial and Medicaid insurance space. This allowed me to transition my program development and implementation work to focus on maternal and child health disparities. It was during this time that I needed to apply all that I learned in my career as an advocate to advocate for the needs of my firstborn child who was a micropreemie.
KH: Well, Jennѐ, you have spoken right to my heart with teaching nutrition classes at the Baptist church. That is so exciting to me. What a great start to the work you're doing now. And I can see how your own micropreemie definitely opened your eyes to the needs of preterm babies everywhere. So before we can talk more about health inequities, we first need to understand what health disparities are seen most among pregnant mothers of color.
JJ: Pregnant mothers of color experience disparities and higher rates of pregnancy-related obesity, hypertension, preeclampsia and premature birth.
KH: And how do those health disparities go on to affect both mom and baby?
JJ: Great question. higher infant and maternal mortality rates, and complications during labor and delivery when seeking adequate care and support in the hospital setting. Black, American Indian, and Alaska Native women are two to three times more likely to die from pregnancy-related causes than White women. If these babies survive, they land in the neonatal intensive care unit and require oxygen for breathing assistance, nutritional supports, and a host of other clinical interventions to keep them alive.
KH: And what are some of the risk factors associated with preterm births among women of color and particularly, and specifically American African American moms.
JJ: The roles of toxic, chronic, persistent stress leaves higher-earning African American women at higher risk of delivering prematurely. Higher social economic status in non-minorities is a preventive factor to protect against premature births. Unfortunately, in African American women, higher income, higher educational status, higher stress, all lead to higher rates of premature births. Even in the developed nation of the United States of America, African American women have equal access to prenatal and post-partum health care services, yet these do not present protective measures to ensure the full-term delivery of a baby. Researchers and the American Public Health Association are now highlighting the role of implicit bias, and racism as a cause of disparity in the United States, particularly among African American pregnant women. Racism, implicit bias, chronic and toxic stress are all risk factors placing this population at higher risk of premature births and higher rates of infant and maternal mortality rates.
KH: And what about historically speaking, are the numbers showing any signs of improvement?
JJ: According to the March of Dimes, premature birth report card, we are seeing no signs of improving the rates of preterm deliveries and infant maternal mortality rates, at least not as of the last four years consecutively. We must move the needle on culturally appropriate interventions that protect and save the lives of African American women and babies and this must start now.
KH: Yes, I absolutely agree. I'm so glad we have this time today to talk about this. Can you share some of the stories you've heard from moms facing these inequities in the healthcare setting?
JJ: I personally faced implicit bias upon my family's entry into the NICU. My son was a micropreemie. and here I am, leading national managed care organizations down a health equity and cultural competency journey for millions of Medicaid lives in my professional space. None of the interventions that I lead, advocated for, or incentivized in hospitals and physicians’ groups to implement were reflected in the care my family and I received during my son’s NICU stay. There was virtually no racial and ethnic diversity among my son’s clinical care team, very little empathy and sympathy offered during the most vulnerable and traumatic point in our journey into parenthood. These basic bedside communication strategies were completely omitted and overlooked. These experiences both personal and professional, led me to create a pioneering health and racial equity training academy for perinatal and neonatal professionals. Our vision is simple, to offer real-time action-oriented solutions for perinatal and neonatal professionals to deliver high quality and equitable care to Black NICU families.
KH: I'm so sorry that you experienced that with your pregnancy and your time in the NICU. It's very inspiring to see you use that to propel your story forward as you advocate for others. Is that what led you to start Once Upon a Preemie? And what could you share with our listeners about that group?
JJ: Sure, Once Upon a Preemie was actually my book to give back to the neonatal community. About a month or two after my son was discharged to go home from the NICU, I finally had quiet time without the bells and the dings and the whistle of the NICU to process and digest everything that we had just experienced. And I wanted to give something back to the hospital fast because I was not the easiest NICU mom to deal with. And I knew that. However, my goal was to be my son's best advocate to try and keep him alive. And so when he came home with us successfully, I wanted to give something back to the NICU community as a token of appreciation. And so I started to journal and over the next three months, I probably journaled my entire NICU experience with my son. And out of that journaling experience, I wrote a poem called You are So Very Special. After reading this poem to my son might after night, his father said “Jennѐ, that's a really powerful poem, you need to do something with it”. And so about a year later, I started working with a publisher to get this poem into a publishable format and it is now a colorfully illustrated, very warm toned book that I like to equate to the Goodnight Moon for preemie parents. Because the reality is we don't have the unique opportunity of tucking our babies into bed at night before going to sleep for sometimes weeks, months, on upwards of a year. And so Once Upon a Preemie is that feel good baby lullaby that's written specifically for preemie parents, written by a premium parent for preemie parents when they are bedside with their babies in the NICU. Out of publishing Once Upon a Preemie, I was invited out at various industry conferences and engagements to speak about my parental experience in the NICU. And I never shied away from my experience as an African American NICU mom, and some of what I felt were some disparities are culturally missed opportunities. That then became the genesis of what helped me to create the Once Upon a Preemie Academy, which is now our virtual health and racial equity, neonatal and perinatal virtual training academy.
KH: What a special story to share, thank you so much. As we look for a starting point to make changes,
what are some ways that health care providers can address these implicit biases on an individual level?
JJ: That is a great question. I strongly recommend that healthcare professionals start by participating and continuous and routine, mandatory health and racial equity and implicit bias training. We can all hold ourselves accountable individually and collectively to check our own biases and assumptions to deliver better quality care to a deserving population.
KH: I think those are some keywords, “continuous” and “routine mandatory training”. You know, in the ideal world, we wouldn't have to do this. But we don't live in the ideal world. And we need to make specific, distinctive changes. And I think that those are the keywords to get us there. What about on an organizational level?
JJ: On an organizational level, it is very imperative that we revisit our hiring, retention and promotion practices, to be more diverse and to be more focused on diversity, equity and inclusion. The more we can hire and retain the talent that reflects the population we serve, the more we can deliver culturally tailored solutions and approaches to address race-based challenges. Second, I can't underscore the importance of mandatory and routine health and racial equity training and implicit bias training. The more we know the more we can grow and the better we can practice. And lastly, I strongly encourage healthcare organizations and administrators to engage black NICU families at clinical rounds to deliver more family-centered and culturally appropriate care. Now is the perfect time to create new partnerships and bust professional silos by engaging the parents and family members of minority babies to be more inclusive and deliver culturally sensitive care.
KH: Well, I think you've laid that out so clearly and so beautifully, and you definitely are the expert in what hospitals and other organizations can focus on to break down these barriers. So, as we finish up today, I'd love to hear more about your experiences in starting up the online training academy for health care professionals.
JJ: Wonderful. We kick off this November intentionally during National Prematurity Awareness Month. We're hosting four one-hour virtual training events each Thursday during the month of November from 1 to 2pm eastern standard time. With the exception of the week of Thanksgiving, we'll pop over to the last Monday of November, November 30 for our final training session. We’ve engaged thought leaders, practitioners and clinicians pair off with African American preemie parents who have experienced some race-based experience in the NICU and who've taken action around their experience by creating a program, a service or a delivery model to help support black NICU families as they're navigating the NICU to hopefully bring their babies home one day. We hope that the professionals listening to this podcast will join us. The training academy is free of charge for this month, you can visit our website at onceuponapreemieacademy.com to register for one or all of the training sessions. And we're so thankful to have a joint partnership with Pak lac, who is able to provide continuing education credits for physicians, nurses, social workers, lactation consultants, of a variety of health care professionals who hang out with us at the training table. We launched on November 5, and we are excited to share that we had a very positive response from the industry, we had upwards of 180 professionals join us and we're still collecting the post-training evaluation results and everyone has very positive things to say about the timing and the quality of the content delivered on the training academy. So we hope that others will join us and get engaged in the conversation.
KH: Well, that's awesome 180 participants right out of the gate, I'm so proud of you. That is fantastic. And we will definitely be sharing that information. The link to Once Upon a Preemie Academy are in the show notes. What Jennѐ I have just loved the discussion we've had today. Thank you so much for your time and for sharing with us your experiences how you got to where you are, how those experiences have shaped you and how you are becoming so much more of a stronger advocate in this community and for helping the rest of us to understand how we can also join you in making a difference. If healthcare professionals are listening, and they're interested in bringing implicit bias training to their hospitals, where can they go to get that or to reach you?
JJ: Thank you Kelly, I can be reached at firstname.lastname@example.org. Once we come out of our training series in November, we'll make our website open for others to join our list there so that they can request individual or unique trainings for their hospital or respective organizations and or hang out with us for future training programs which will be set to launch again in April, 2021.
KH: Awesome, that's so good to know that in case somebody can't get in this month there will be new opportunities next year and as we move forward. Jennѐ, I am just so impressed by you and encouraged that you are making such a difference and showing us how we can jump on with you to learn how to bring some of these disparities to a close. So, we'll have Jennѐ’s contact information in our show notes for our listeners. Thanks again for talking with us and listening to us. And as always to our listeners. We look forward to bringing you future topics on the science of human milk.