Working to Improve Sickle Cell Healthcare (WISCH)
Two programs—the Sickle Cell Disease Newborn Screening Program (SCDNBSP) and the Sickle Cell Disease Treatment Demonstration Program (SCDTDP)—aimed at improving screening and follow-up for those who have tested positive for sickle cell disease and trait, and improving care across the lifespan.
SCDNBSP: June 2011 to May 2015. SCDTDP: September 2010 to September 2014.
- Who: The SCDNBSP involved six teams comprised of federally qualified community health centers and other primary care sites, comprehensive sickle cell treatment centers and community-based organizations. The SCDTDP consisted of nine teams comprised of community centers, doctors, sickle cell departments, emergency room coordinators, parents and patients.
- Funder: The project was funded by HRSA and in partnership with the Boston Medical Center and the Sickle Cell Disease Association of America.
- Our Role: Facilitated a Breakthrough Series learning collaborative to apply quality improvement methodology to sickle cell disease care and education in a variety of settings. Led the development of expert-reviewed quality measures for sickle cell disease (e.g. acute care measures). We also served as the National Coordinating Center for SCDTDP and the National Coordinating and Evaluation Center for SCDNBSP. In these roles, we collected, monitored and distributed best practice data and findings, identified protocols for the treatment of sickle cell disease and related complications, and identified and disseminated educational materials related to sickle cell disease.
Census Social Media Toolkit
We’ve put together a collection of social media posts and graphics to help you encourage families to participate in the census. Use these posts on your own social channels to connect with families and prevent children from being undercounted. Make sure to tag @NICHQ so we can like and share your post.
National Minority Health Month Social Media Toolkit
In recognition of National Minority Health Month, we’re sharing a social media toolkit and infographic to raise awareness about racial and ethnic disparities and the need to achieve health equity. Download these resources to use on your own social channels and make sure to tag @NICHQ so we can like and share your post.
Rare Disease Day Social Media Toolkit
Use this social media toolkit with infographics, images and sample posts sharing key statistics and facts that illustrate the impact rare diseases have on over 25 million Americans. Share the toolkit with your colleagues and use it yourself on Rare Disease Day on Feb. 29, 2020
Fast Facts to Champion Support for Caregiver Depression
This brief provides fact sheets on the key strategies and information influencers need to help more caregivers affected by depression access the supportive services and resources.
Interactive E-Handout for Safe Sleep Conversations
This interactive E-handout helps families learn about safe sleep practices. Health professionals can sit with families and click through the pages where they’ll find different sleep scenes and environments. A series of prompts and pop-ups show what is and is not safe and inspire learning conversations. Families can also access the handout at home and use it to teach their friends and families about safe sleep.
Opportunities for Medicaid to Transform Pediatric Care for Young Children to Promote Health, Development, and Health Equity
Covering one half of young children birth to five, Medicaid (and Medicaid-CHIP programs) plays a critical role in improving young children’s health and developmental outcomes and assisting the families who support their healthy development. This document provides a common framework and specific opportunities for states and their partners working to improve Medicaid for young children.
Supporting Children’s Health During the COVID-19 Pandemic
While most children may be unlikely to have adverse health effects from the illness, COVID-19’s overall impact on children’s health outcomes will likely be far reaching.
Participate in the Census, Promote Children’s Health
An accurate census count helps ensure that all children and families get the resources and representation they deserve to help them reach their optimal health. However, the census has historically undercounted millions of people, many of them children.
Addressing Black Maternal Mortality Rates Starts with Listening to Black Women
In New York State (NYS), Black women are more than three times as likely to die from pregnancy or giving birth as white women. This disparity has persisted alongside the U.S.’s rising maternal mortality rate, which has doubled in the past 15 years. Recognizing the urgent need for change both within their state and across the nation, NYS launched an initiative to engage women of color in identifying sustainable solutions for improvement.
Four Steps to Address Racism’s Impact on Maternal and Child Health
Racism has been baked into U.S. systems and structures since enslavement, and Black families and other people of color are still suffering its consequences. As health professionals, it’s vital to acknowledge that all forms of racism—institutional, personally mediated and internalized—are real, are present in health systems, and are adversely affecting the health of Black families. One person can’t solve a systemic problem, but there are impactful steps everyone can take to help address it.
NICHQ Employee Spotlight: Rachel Leibowitz
Each month, we’re shining a spotlight on a NICHQ employee, asking them to share their memories, advice, and goals. Here, Accounts Payable Coordinator Rachel Leibowitz shares how her experience in non-profit finance has helped revamp NICHQ’s financial systems and support NICHQ employees' work to improve children's health outcomes.
Using an Equity Lens to Reduce Maternal Mortality in Louisiana
Louisiana has one of the highest maternal mortality rates in the country. And troublingly, Black women are dying from pregnancy-related deaths at over four times the rate of white women. According to a recent report, more than half of these deaths could have been prevented by making a system change, either at the patient, community, or hospital level. These findings illustrate the enormous potential that quality improvement initiatives have for reducing maternal mortality in Louisiana and eliminating the Black-white disparity in maternal deaths.. Here, the Louisiana Perinatal Quality Collaborative shares seven opportunities for improvement.