It Starts with Us and It Starts Now: Healing for Moms and Babies Begins with Ourselves and Our Systems
A message from NICHQ CEO Scott D. Berns, MD, MPH, FAAP
January 26, 2021
As any new year approaches, it is easy to get caught up in the “fresh-start effect,” a phenomenon that often accompanies the new year. It is why, after January 1st, many of us begin to cultivate that new habit.
Although this “fresh-start” feeling makes us more open to change, the social determinants of health that serve as the foundation of our life experiences and systemic forces like racism, sexism, and other tools of oppression exert a level of control and pervasiveness that no arbitrary flip of the calendar can change. Real and lasting change takes long-term commitment and focused, relentless effort – changing our systems from savior-designed to equity-empowered. We must change.
Our country’s families have been grappling with a pandemic for nearly all of 2020 – the staggering inefficiencies in vaccine distribution grounding us to the reality that vaccinating everyone is a process that takes planning and time. We have watched our nation struggle to take minimal actions to protect one another, such as wearing masks and social distancing. Health care professionals work tirelessly to do what they can amid the chaos while having to defend basic, sound science. We have witnessed a reveal of systemic racism in health care like never before, one that places people of color, mothers, and birthing people of all genders in a limbo of uncertainty and risk.
"To label these disparities a flare-up exacerbated by COVID-19 misses and undermines the impact of systemic racism. And it underscores the need to call out and confront racism and biases in health care every time we sense them. Too many people of color have died in this pandemic from not being heard in a system predominated by white decision-makers, despite advocating for themselves. We must change."
We have also watched our nation struggle to take sweeping actions to end the harmful effects of racism, even in the face of objectively shared outrage over ongoing police violence toward Black communities. Our children witness people being treated very differently depending on how they look and what they protest, from the anxiety-inducing pandemic to the shocking murder of George Floyd and the sea of national protests that followed. And our children have been left to process the disturbing events of 2020 with an inconsistent support network, as families, caregivers, play spaces, schools, and other child-centered spaces attempt to manage the effects of the pandemic. Parents and caregivers are struggling to secure housing, meet remote schooling schedules, and take care of their own mental, emotional, and physical health. In the lock-down, children are locked out of the places they normally gather to play and socialize – community centers like Boys and Girls Clubs, school gyms, and other community support services have not been able to provide the safety nets that often keep children and families safe. We must change.
Turning the Page
So how do we move forward? We clearly need to heal. But healing, like equity, means different things to different groups of people. True healing requires accountability and justice.
Jan. 19 marked the fifth annual National Day of Racial Healing, a moment to participate in essential and timely conversations on racial healing, equity, and justice. Nearly 100 virtual events were hosted to foster truth-telling, affirm our common humanity, and inspire collective action. An annual observance held the first Tuesday after Martin Luther King Jr. Day, the National Day of Racial Healing is hosted by the W.K. Kellogg Foundation (WKKF) and builds on the work and learnings of Truth, Racial Healing, & Transformation (TRHT).
As leaders, we hear talk about structural racism, but it is challenging to assess and change structural biases within our own organizations. The one thing that is becoming clear is that it is past time for health care leaders to act. I have been on my own personal journey of anti-racism since 2019, when I participated in a two-day summit organized by First Year Cleveland and the YWCA Greater Cleveland: 400 Years of Inequity: A Call to Action. I have become more aware of the implicit biases I hold and how those can impact the experiences of others – and more aware of the amount of work I still must do. Still, it is not enough to address racism and implicit bias on an individual level. We must – I must – cross the threshold connecting individual and organizational action.
As individuals, each of us is an important component of a larger working system. A health care system is ideally a well-oiled machine of functional, logistical, and administrative parts – in theory, smooth sailing until we add the unpredictable element of humanity, with all of our socialization, conditioning, and often ill-informed understanding of race as a social construct that prevents us from being our best. At NICHQ, we realized this challenge as we began to make space for our equity journey in 2020. Assessments, in-services, meetings, and most importantly – creating space for tough, uncomfortable conversations – have helped us see some progress in our equity journey. But as an organization with quality improvement running through our blood, we know something more tangible, more measurable, will boost our efforts – and likely boost the efforts of other maternal and child health organizations.
Equity Systems Continuum
Change is often incremental, and slow. But when so many Black, Brown, and Indigenous lives have been at stake for far too long, slow incremental change is not acceptable. Systems that do not serve everyone equitably must be rebuilt with equity in mind, especially systems designed to deliver life-saving interventions. I call on those of us on an individual journey to cross the threshold into systems change, especially where power dynamics are in our favor.
I am proud to announce the start of a two-year initiative focusing on the creation of an Equity Systems Continuum, a framework started by the Global Infant Safe Sleep (GISS) Center. Under the leadership of Senior Project Director and Equity Lead Stacy Scott, PhD, MPA, the NICHQ project team will develop an Equity Systems Audit Tool (ESAT) to help organizations identify where they are on the Equity Systems Continuum – and ultimately, how to move to an equity-empowered system.
Savior-Designed Systems: Originally designed to rescue, save, and deliver services to “vulnerable” communities by members of the oppressing community. Savior-Designed Systems devalue individuals’ lived experiences. In response, health care decisions are made without incorporating individuals’ opinions and without considering how racism and oppression have impacted their health and behaviors. As a result, individuals are often blamed for poor health outcomes and labeled as non-compliant, difficult, or rude.
Ally-Designed Systems: Focused on building self-awareness among the oppressing group while partnering with oppressed groups to spark change. Ally-designed systems are a step forward, but they still operate from within the confines of white supremacy. Ally-designed systems can then unintentionally feed into paternalism, tokenism, and well-intentioned but one-sided approaches that ultimately privilege “expert” voices over the voices of marginalized groups. Ally-designed systems are a start, but they are not enough.
Equity-Empowered Systems: Truly equitable health care requires purposefully reconstructing systems that are rooted in and advance equity of the historically marginalized group. Equity-empowered systems would amplify lived experiences, provide trauma-informed care, and actively name and address the root causes and barriers of navigating challenging systems.
As part of our organizational equity journey, NICHQ will be first in line to use the assessment tool and share our own progress, challenges, and bright spots along the Equity Systems Continuum. Our two-year project work will be complete with the creation of an implementation plan to help maternal and child health organizations move in the direction of an Equity-Empowered System and bolster change on a broad scale. It is our hope that in addition to organizational systems like NICHQ, this suite of tools will be useful to hospitals, health systems, insurers, and others who are committed to maternal and child health.
This project strongly connects to NICHQ’s spirit and expertise in quality improvement and our mission at its core: Every child achieves their optimal health. The potential for this project to maximize the impact of the systems in which health care and public health professionals are working and patients are receiving care is ultimately why we all show up to work every day.
I invite leaders on all levels to join me in this attainable pursuit to build Equity-Empowered Systems for maternal and child health. Many opportunities for participation will be available – remember to sign up for our news updates.
NAPPSS-IIN Hosting Community of Practice Meetings to address policies and Share Experiences about Safe Sleep and Breastfeeding
The NICHQ National Action Partnership to Promote Safe Sleep Improvement and Innovation Network (NAPPSS-IIN) project will continue to convene six Community of Practice (CoP) groups from September 2022 – March 2023. CoPs include Birthing Professionals, Community Advocacy Organizations, Community-Based Home Visitors, Early Childcare Providers, First Responders, and Researchers. Each group will convene twice to continue to address policies, improve skills, and learn from each other’s experiences in the areas of safe sleep and breastfeeding.
NICHQ Employee Spotlight: Kelly Edwards, MPH, Senior Project Manager
Kelly Edwards discusses her journey from NICHQ intern to Senior Project Manager, and shares highlights and key takeaways from the six NICHQ projects she's supported.
Children and Their Families Have a Right to Gender-Affirming Healthcare
As physicians, public health professionals, and care providers, we have an obligation to support youth with unique healthcare needs who are at higher risk for negative health outcomes from discrimination, including bullying, physical assault, and suicide. Join us by engaging in meaningful dialogue about best practices for gender diverse kids to improve quality of life, reduce mental health disparities, and most importantly, help the most historically marginalized kids achieve their optimal health.
3 Ways to Close Gaps in Sickle Cell Disease Care: Recommendations from NICHQ Projects
In the past several decades, clinicians, public health professionals, and those with lived experience have seen advancements in Sickle Cell Disease (SCD) treatments and research that have significantly improved outcomes and increased life expectancies for people living with SCD. For example, the FDA-approved medication hydroxyurea (HU) has been recommended as a SCD standard of care due to its ability to help people with SCD mitigate pain and the need for blood transfusions. Preventative measures, such as screening children and adolescents for risk of stroke and ensuring that all people who have SCD receive recommended vaccinations, have also been instrumental in reducing complications associated with SCD. And recently, development of gene therapies has presented possibilities of a new cure. Conversations on how to improve access to care should continue, and these three recommendations begin with some of the most pressing needs.
NICHQ Intern Spotlight: Macy Parakh
Macy Parakh (she/her) is a Marketing Communication Intern Summer 2022 at NICHQ. She is a Master of Public Health (MPH) student at Boston University School of Public Health (BUSPH). Macy is studying Community Assessment, Program Design, Implementation, and Evaluation (CAPDIE) and Maternal and Child Health (MCH). She is originally from Toronto, Canada. Macy has a bachelor's degree in Communications from McMaster University. When Macy isn’t studying or working, she can be found baking, dancing, and spending time with her dog.
NICHQ Intern Spotlight: Madeline D’Onfro
Madeline D’Onfro (she/her) is an intern on NICHQ’s HNCC Project this Summer. After growing up in Massachusetts, Madeline spent seven years living in Boise, Idaho and has now returned to the Northeast to pursue her Master in Public Health at Boston University. She is concentrating her studies in Community Assessment and Program Design and Maternal and Child Health. Madeline’s Summer QI project is to increase her average running mileage. In her free time Madeline enjoys hiking, cycling, and any other activity that allows her to be outdoors!