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.


Add your comment





sickle cell disease SCD advocacy Baby-Friendly breastfeeding Pediatric journal Best Fed Beginnings infant health safe sleep IM CoIIN QI quality improvement flexibility family partner parent partner vision screening nichq perinatal quality measures sustainabilty preterm birth tips PDSA cycle baby box infant mortality family engagement eccs coiin immunizations health equity health disparities accreditation astho onboarding collaboration engagement partnerships larc nashp new york wic new york state hospitals mom mother partners epilepsy data AAP early childhood pdsas texas community support learning session children's health new technology engineering transgender collaborative learning planning PDSA planning paralysis underplanning analysis paralysis vision eye health smoking smoke-free housing second-hand smoke toolkit e-module dental care oral health underserved populations health inequity public health Maternal and Child Health Journal leadership engagement indiana medicaid perinatal regionalization sudden infant death syndrome national birth defects prevention month birth defects pregnancy planning one key question prepregnancy health preconception health public breastfeeding support families patients experts insights CHOPT childhood obesity innovation food desert telemedicine TBLC breastfeeding supporting prematurity racial disparities audiology ehdi follow-up illinois talana hughes vulnerable populations sports asthma soccer basketball obesity football SIDS Pokemon Go gamification smartphones interconception care birth spacing issue brief contraceptive use postpartum care CoIN HRSA early childhood trauma NHSA community health consumer advocacy womens health interconception health teenage health PATCH wisconsin missouri risk appropriate care community health workers SCD< infographic infant mortality awareness month inspirations childrens health national breastfeeding month maternal health patient engagement hearing loss hearing treatment pediatric vision eyesight pre-term birth early-term birth SCD clinic los angeles LOCATe CDC levels of care neonatal care maternal care smoking cessation project safe sleep practices neonatal abstinence syndrome NAS opioids maternal and child health MCH Family voices quality care mental health hydroxyurea SCDTDP men dads testing change data sharing state government city government apps sleep AJPM preconception care senior leadership breastfeeding support video series access BQIH exclusive breastfeeding long-acting reversible contraception unplanned pregnancies social determinants of health health innovations Best Babies Zone CoIIN baby boxes Rhode Island progesterone rooming-in patient and family engagement healthy weight healthy lifestyles primary care telementoring ECHO video conferencing socioemotional health childhood development pediatric Tennessee interview National Coordinating and Evaluation Center medical-legal partnerships mobile app disparities perinatal care overweight obese healthy weight clinic wellness pilot sites data collection education resources paternal engagement risk-appropriate care preterm infants high-risk babies Ten Steps public relations social movement reversible contraceptives medical home pediatric medical home patient transformation facilitator PTF skin-to-skin rooming in prenatal smoking information visualization charts SUID postpartum new mother webinar AMCHP QI Tips ongoing improvement fourth trimester partnership quality and safety coaching leadership support year end holiday message reflections gratitute Medicaid data doctor relationship PQC perinatal quality collaboratives vision care vision health evidence-based guidelines ASH health and wellness healthy living healthy eating home visitors home visiting programs March of Dimes APHA results evaluation supplementation formula reduction video infant loss social media leadership Berns Ten Steps to Successful Breastfeeding sustainability stress prenatal care data capacity epidemiologists surveillance data PFAC community partners preconception and interconception care motivational interviewing Native Americans ADHD NICHQ Vanderbilt Assessment Scale ADHD Toolkit system design care coordination skin to skin newborn screening reduce smoking aim statement safe birth Texas Ten Step skin-to-skin contact 10 Steps staff training small tests acute care mother-baby couplet collective impact population health preconception Newborn Screening Program substance abuse breast milk formula milk bank crisis first responders NYC improvement healthcare health system sickle cell diease treatment protocol family health partner maternity care Collaborative Improvement and Innovation Network Health Outcomes Cross-Sector Collaboration Knowledge Sharing Child Health