Rare As One Network Workstream Facilitation
We support the launch of patient-centered research networks by facilitating topical workstreams with grantees from the Rare As One Project (RAO), creating space for collaboration among RAO grantee organizations.
The program's ultimate goal is to accelerate progress against rare diseases by scaling successes of researchers and rare disease patient organizations.
August 2020 to January 2022
- Who: Rare as One (RAO) is a project of the Chan Zuckerburg Initiative (CZI) that supports patients to accelerate progress against rare diseases. With support and guidance from patient communities, rare disease experts, and advocacy organizations, this program will help communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts through capacity-building services. In this two-year award, grantees have begun to identify content areas for defined workstreams.
- Funder: The project is funded by the Chan Zuckerburg Initiative.
- Our Role: NICHQ will facilitate the five workstreams comprised of RAO grantee representatives to support the development of goals, processes for collaboration, measures, and outcomes in key areas of need for RAO grantee organizations. NICHQ will utilize a Collective Impact framework to support the workstreams by providing structure, establishing a shared measurement strategy, building engagement, and mobilizing resources. To ensure the workstreams are cohesive, active, and participant-driven, each workstream will have two co-chairs who will partner with NICHQ to facilitate discussion and decision-making.
NICHQ’s Next Steps: Update on the Equity Systems Continuum Initiative
The National Institute for Children’s Health Quality, with funding by the W.K. Kellogg Foundation, is building upon an evidence-informed conceptual framework known as the Equity Systems Continuum to describe and define the systems that individuals and organizations currently operate within: Supremist-Designed System, Savior-Designed Systems, Ally-Designed Systems, and Equity-Empowered Systems. The Global Infant Safe Sleep Center (GISS) developed the original framework and serves as an ongoing partner in the project.
3 Strategies to Leverage Community-Based Research in Maternal and Child Health
During Spring 2021 DARE conducted a series of community listening sessions for the National Action Partnership to Promote Safe Sleep Improvement and Innovation Network (NAPPSS-IIN). Listening session participants were asked about the resources and tools that help them promote safe sleep and breastfeeding/chestfeeding, and additional support needed to meet community safe sleep and breastfeeding/chestfeeding needs. While the analytic results are forthcoming, DARE is excited to share key lessons learned during NAPPSS-IIN community listening sessions.
NICHQ Employee Spotlight: Chiagbanwe Enwere, NICHQ Project Analyst
As a member of NICHQ's Data Applied Research and Evaluation (DARE) team, NICHQ Project Analyst Chiagbanwe Enwere brings a unique data and equity perspective to the New York State Maternal and Child Health Collaboratives project
MCH Lead Poisoning Toolkit: Lessons on Using Data for Improvement
The Maternal and Child Environmental Health Collaborative Improvement and Innovation Network (MCEH CoIIN), a national initiative led by the Association of Maternal and Child Health Programs developed the MCH Lead Poisoning Toolkit to share innovative practices and methods that nine different state teams tested out to improve access to systems and services that address the needs for pregnant women, infants, children, and families that are exposed to lead.
A Physician’s Reflections on Racism and Treating Sickle Cell Disease
For NICHQ’s current and future work, I am motivated by wanting to be a better version of myself in service of others. Wondering whether my own implicit biases impacted my care of patients and families, I realize that I cannot redo past ER experiences. If I could go back, I would slow down to acknowledge and try to set my biases aside and approach patients from a personally more informed perspective. But now, I can use my past, present, and future experiences to ensure NICHQ is amplifying important lessons from this multi-year effort reflecting the compassion, care, and commitment of hundreds of dedicated professionals in pursuit of equitable, accessible, and quality healthcare for people living with sickle cell disease.
Navigating Well-Child Visits and Vaccinations during COVID-19
Well-child visits and recommended vaccinations are essential, ensuring children stay healthy and are protected from preventable diseases and illnesses such as measles, whooping cough, and seasonal flu. But, as the COVID-19 pandemic persists, data shows that fewer childhood vaccinations have been given and many children have fallen behind on their scheduled appointments. Healthcare professionals should utilize the following strategies to work with parents and caregivers to get their children caught up on missed appointments and recommended vaccinations.