DRDC Assists Spina Bifida Association in Building a National Clinical Care Network

Spina Bifida (SB) is a birth defect that results in developmental disability and complex health care needs. The Spina Bifida Association (SBA) has been supporting people with SB and their families since 1973, and their website lists 133 clinical services providers and 36 chapters that provide public and professional education, information, and support, on a community level.

Beginning in October 2013, with funding provided by the CDC, the DRDC began working with the SBA to develop a national strategic plan for a Spina Bifida Association Clinical Care Network. The goal of this Project is to develop a Strategic Plan for a Spina Bifida Collaborative Care Network (SBCCN) to improve the lives of people with Spina Bifida (SB). A steering committee representing the Spina Bifida Association (SBA), the Centers for Disease Control and Prevention National Center on Birth Defects and Developmental Disabilities, and DRDC monitors and plans activities. Stakeholders are represented through a leadership and overall planning groups structure.

Update, August 2014.  The past 9 months of meetings and networking have culminated in a Draft Strategic Plan that has 8 focus areas with 5 overarching goals:

  • to improve communication among all stakeholders in the care and lives of people with SB,
  • to develop SB clinic site performance expectations for quality improvement programs,
  • to improve the care of adults with SB,
  • to develop best practices for clinic programs for health outcomes improvement, and
  • to sustain the capacity of SBCNN.

The Plan, rolled out at the National SBA Conference June 29 – July 2, 2014, included a vetting and feedback process with the larger community. Focus groups from the Conference and an ongoing on-line survey will be analyzed, along with a Concept Mapping exercise that led off the leadership groups’ first meeting. These analyses will be reviewed by the overall planning group to assure the Strategic Plan covers the important aspects and needs of the SB community. Next steps will be briefly outlined for future implementation.