Resources and Must Reads for Infant Mortality Awareness and Sickle Cell Awareness Month

Posted September 01, 2015 by NICHQ

NICHQ is joining with organizations around the country and world to celebrate Infant Mortality Awareness Month and National Sickle Cell Awareness Month in September.

NICHQ has a long history of working to improve outcomes on these health topics. We invite you to explore and share our resources, stories, videos and other materials related to reducing infant mortality rates and improving care for individuals with sickle cell disease.

Infant Mortality

The Problem
In the U.S., 5.96 out of every 1,000 babies dies before his or her first birthday. That translates to 23,440 children each year. That’s the equivalent of about 1,000 empty kindergarten classrooms each year. The leading causes of infant deaths include: sudden infant death syndrome, disorders related to short gestation or low birthrate, and congenital abnormalities.
What is NICHQ Doing?
Through multiple projects, NICHQ has worked to develop, implement and evaluate sustainable approaches to improving systems of care that contribute to infant mortality rates. Our current national Collaborative Improvement and Innovation Network to Reduce Infant Mortality (IM CoIIN) initiative is working with all 53 states and territories to reduce infant mortality and improve birth outcomes by focusing on six key strategy areas. They include: safe sleep, smoking cessation, pre and early term birth, pre and interconception care, risk appropriate perinatal care, and social determinants of health. By combining three key methods for change—collaborative learning, innovation networks and quality improvement—IM CoIIN is increasing the adoption of effective strategies to address complex problems related to infant mortality. NICHQ is also working on several perinatal collaboratives seeking to improve maternal and newborn outcomes and promote the sharing of best practices of perinatal care.
Must Read/See Resources
  • Video: Saving Babies-Reducing Infant Mortality [Watch]
  • Video: Tackling a National Embarrassment [Watch]
  • A First Response to Safe Sleep Habits [Read]
  • Alaska Shows Perinatal Regionalization Works to Reduce Infant Deaths [Read]
  • Viewpoint: A Novel Method for Tackling Complex Population Health Problems [Read]
  • What's Behind NYC's Drastic Decrease in Infant Mortality Rates? [Read
  • How Delaware Became a Model for States in Preventing Infant Deaths [Read]
  • Group Care for Women and Babies Reduces Pre-Term Births, Increases Care Satisfaction [Read]
  • Maternal Interviews Key to Addressing Infant Mortality [Read]
  • Saving Newborns by Changing the Delivery System [Read]
Learn more in the Infant Health section of the NICHQ website.

Sickle Cell Disease

The Problem
While life expectancy has increased in past decades for people with sickle cell disease, many still struggle with barriers in the healthcare system and poor health outcomes. Many patients do not have access to coordinated care and rely on emergency room visits to manage pain crises, where they may encounter confusion about the disease, distrust and delayed treatment for pain, leading to longer hospitalizations and patient distress.
What is NICHQ Doing?
For more than five years, NICHQ has been working with national partners and diverse stakeholders to improve systems of detection and care for people with sickle cell disease (SCD). Using collective impact and quality improvement models, NICHQ is working with regional teams across the country to increase the number of providers treating SCD patients; to increase the number of patients taking the only approved treatment for SCD—hydroxurea; and to improve access to comprehensive, coordinated care. NICHQ also assists in developing tools to improve care, such as protocols for emergency rooms to reduce wait times for pain medicine, curricula to assist in the transition from pediatric to adult care and educational materials for providers and patients. The result of our work: more EDs, health centers and practices across the country are making measurable, sustained improvements to improve care for patients with SCD and their families.
Must Read/See Resources
  • Sickle Cell Pain in the Emergency Department: A Guide to Improving Care [Read]
  • Sickle Cell Disease Treatment Demonstration Program Congressional Report [Read]
  • Sickle Cell Disease Treatment Demonstration Program Model Protocol [Read]
  • How One Mom is Raising the Profile of Sickle Cell Disease [Read]
  • Sickle Cell Pain Protocol Reduce Wait Times for Meds and Eases Patient Frustration [Read]
  • Acute care resources [View]
  • Medical home/care coordination resources [View]
  • Hydroxyurea resources [View]
  • Screening and trait resources [View]
  • Self-management resources [View]
Learn more in the Sickle Cell Disease section of the NICHQ website.


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