Building the Foundation for Collaborative Learning and Research for Persons with Spina Bifida
A project to develop goals and measures for improving care for patients with spina bifida and identify high leverage changes that will bring about improvement in the care of patients with spina bifida. In addition, create a first generation registry that could be used to inform both improvement work and clinical research.
Who
The project involved dozens of healthcare providers working with persons with spina bifida as well as experts in patient registries and many clinical leaders from national healthcare organizations.
Our Role
Developed the foundation tools for an ongoing learning collaborative program among centers caring for persons with spina bifida to continuously improve care for persons affected by this condition.
Funder
The project was funded by the U.S. Department of Health and Human Services, Agency for Healthcare Research and Quality and in partnership with the Spina Bifida Association of America.
Project Impact
External Resources
State Perinatal Quality Collaboratives
List of PQCs funded by the Center for Disease Control and Prevention (CDC)
The Power of PQCs
Video showing the impact that PQCs have on the communities they serve. Produced by the NNPQC.
PQCs in the News
Articles in news outlets covering state PQCs, their activities, and the people that work in the collaboratives.
Patient Safety Bundles
From the Alliance for Innovation on Maternal Health. PSBs are collections of evidence-informed best practices that address clinically specific conditions in pregnant and postpartum people. The NNPQC helps provide TA and support to PQCs in adopting the core AIM Perinatal Mental Health Bundle.
Perinatal Quality Collaboratives
The CDC’s landing page for PQCs, including helpful infographics, videos, and links to help explain what PQCs are, how they work, and stories, learnings, and publications that have come out of the state PQCs.
Related Content
Resources produced by the Building the Foundation for Collaborative Learning and Research for Persons with Spina Bifida project or on related topics
Meet Our Team
“In our deep organizational work to move along the Equity Systems Continuum from a Savior-Designed System to an Equity-Empowered System, we acknowledge the power of action. The potential is limitless for today’s commitments to improve the systems in which health care and public health professionals work and families receive care.”
