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New Initiatives in Spina Bifida Enhancing Care

New Initiatives in Spina Bifida Enhancing Care. Timothy J. Brei, MD, FAAP Riley Hospital for Children SBA Board of Directors and Liaison to PAC 2007 Spina Bifida Association National Conference Louisville, Kentucky. New Initiatives - Goals.

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New Initiatives in Spina Bifida Enhancing Care

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  1. New Initiatives in Spina Bifida Enhancing Care Timothy J. Brei, MD, FAAP Riley Hospital for Children SBA Board of Directors and Liaison to PAC 2007 Spina Bifida Association National Conference Louisville, Kentucky

  2. New Initiatives - Goals • To improve the quality of care for individuals with spina bifida • To increase research related to spina bifida • To increase awareness and knowledge about spina bifida

  3. Professional Advisory Council Initiatives • Revised Guidelines for Care • Spina Bifida Clinical Care Network • Spina Bifida Database Registry

  4. Spina Bifida Guidelines for Care • New edition just released • Previous edition published in 1994 • Designed for care providers in partnership with individuals and families • Utilized research information, as available, to develop the guidelines • Working Committee of: Mark Merkens, Chair Karen Rauen Kathleen Sawin Rune Simeonsson Jack Fletcher Timothy Brei • All PAC members contributed / edited / reviewed

  5. Spina Bifida Clinical Care Network • Good care is happening around the country by many committed health care providers – nurses, physicians, therapists – in partnership with families and individuals with SB • Structures of care provision vary widely • SBA historically has had little information about types of services and structures of care • Often very little interaction between care providers and local SBA chapters • Very little linkage between clinics / care providers • NHPC Listserv provides some interaction between providers but doesn’t provide breadth of linkage / support

  6. Spina Bifida Clinical Care Network • Capture information • About structures of care and care providers • Designed to be inclusive • Know who is providing care, how care is provided and align with SBA • About persons with SB of all ages • Classification scheme • Roster • Clinic • Program • Comprehensive Center • At each level • Commitment to enhanced care coordination and services available

  7. Spina Bifida Clinical Care Network • Ultimately important for looking at improving the quality of care • Service • Provider information, education and support • Research

  8. Spina Bifida Clinical Care Network • Service • Provides better information about structures of care and barriers to care • Provides useful data to SBA as information resource • Provides way to facilitate / enhance service • Does one clinic’s experience mirror another clinic • Innovative ideas • Advocacy partnership with SBA and local chapters

  9. Spina Bifida Clinical Care Network • Provider information, education and support • Enhanced communication between professionals • Improve opportunities for professional continuing education • Free discussion of care “systems”, struggles and how we can support each other • More rapid dissemination of the latest research and care initiatives

  10. Spina Bifida Clinical Care Network • Research • Development of a database that gathers information about the SB care • Eventually be able to look at some care outcomes • Quality improvement initiatives • Enhance ability of researchers to link with multiple people / sites for research • Multi-site prospective collaborative research is necessary to answer many questions we have in SB care • Encourage researchers to develop new research initiatives

  11. Spina Bifida Database Registry • Project is being initiated to begin to gather data on measurable aspects of care • Addresses clinical questions about current care • Information will be obtained from chart and during clinic visits • Provides mechanism to identify additional research questions • Can outline issues that will allow for quality improvement initiatives • Flexible database • Changes / additions to database will be possible over time

  12. Spina Bifida Database Registry • Project is in development • Currently a first draft of database is being finalized for review • Will require additional revision and PAC approval • Some trial sites to identify and address changes which may be necessary • Hurdles before widespread implementation • Privacy • Collection burden, and time / financial requirement for all data entry • Infrastructure - data management / system requirements • Develop ongoing working sub-committee to monitor / address database issues

  13. Summary These initiatives serve as the foundation necessary: • To improve the quality of care for individuals with spina bifida • To increase research related to spina bifida • To increase awareness and knowledge about spina bifida through partnerships and advocacy

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