Spina Bifida Collaborative Care Network

SBA_2015-02-02

Dear Friends,As promised we are sharing the results of the focus groups that were held at our 2014 national conference with conference participants before we release them to the public.We thank you for your participation and interest in the Spina Bifida Collaborative Care Network (SBCCN).The results are promising and although we are providing you with a brief summary of those results in this email, the full unedited report is attached for your review.

The SBCNN is moving forward at high speed in 2015 and we will continue to give you updates on our progress

It takes a community to improve care for the community so we thank YOU!

Spina Bifida Collaborative Care Network (SBCCN) Update

In August 2014, the Spina Bifida Collaborative Care Network (SBCCN) Strategic Plan Leadership and Overall Planning groups produced a draft strategic plan with (5) overarching goals:

1.     Improve communication among all stakeholders in the care and lives of people with Spina Bifida (SB)

2.     Develop SB clinic site performance expectations for quality improvement programs

3.     Improve the care of adults with Spina Bifida

4.     Develop best practices for clinic programs for health outcomes improvement

5.     Sustain the capacity of the SBCCN

The strategic plan was revealed at the 2014 National Spina Bifida Association Conference to adults with SB, health care providers and Chapter directors. Information gathered through face-to-face focus groups and online surveys helped define and develop the SBCCN goals.

RESULTS

Goal 1: Improve communication among all stakeholders in the care and lives of people with Spina Bifida (SB)

Responses from surveys and focus groups indicate that there is a need for improved communication between SB clinics, non-SB clinic health care providers, Chapters and people living with SB.

Goal 2: Develop SB clinic site performance expectations for quality improvement programs

Feedback from participants yield important information on key measures of performance by which SB clinics should be evaluated:  access to specialists as needed, relevant patient education on SB issues, coordination of care and quality of life outcomes for patients

Goal 3: Improve the care of adults with SB

Responses align directly with this goal that the needs of adults with SB are paramount at this time, and should be a priority focus for the SBCCN in the immediate future. There is substantial room for quality improvement in the provision and coordination of care for adults with SB.

Goal 4: Develop best practices for clinic programs for health outcomes improvement

Participants clearly indicated that the SBCCN can and should play a central role in the development of clinical best practices or standards of care, for the treatment of all people with SB.  Furthermore, they felt that the SBCCN should play a role in the dissemination of best practices to health care providers, individuals with SB and their families, as well as targeted organizations including non-profits, government agencies and educational institutions.

Goal 5: Sustain the capacity of the SBCCN

Respondents felt that the SBCCN should define the roles and responsibilities of network stakeholders, and partner with many different organizations to strengthen the capacity and overall reach of the SBCCN.

Outside of the survey, many respondents indicated that remote areas often do not have SB clinics and are therefore unable to access needed care. Furthermore, there is a general lack of resources in rural areas such as independent living programs, transportation, employment opportunities, and specialist medical care.

The focus group participants provided consistent feedback on general areas where the SBCCN could make valuable changes:

  • Focus on adults-and help adults develop active partnerships with providers
  • Revise health care guidelines
  • Increase communication across stakeholder groups
  • Identify standards of care that, when used, could make care more seamless across states and clinics.

Drawing from the responses and feedback of focus group participants, it is clear that there is a need for the SBCCN.  Primary areas of concern identified from the focus group discussions about things the SBCCN should focus on include:

  • Revision or development of standards of care in all main areas of SB
  • Find more balance in the unequal availability of SB care across age groups, regions of the country, and clinics
  • Increase community awareness of SB-outside of the SB community
  • Increase partnerships with government, community and patient organizations
  • Foster independence for individuals with SB at earlier ages
  • Define roles and responsibilities among SBCCN stakeholders
  • Create a system for adult care and community support
  • Improve communication between clinics, SBA Chapters and patients-this includes identifying more providers who understand SB, increased use of email between health care providers and patients outside of scheduled appointments
  • Employ leadership in the development, distribution and use of technology such as telemedicine and “apps”.

Read the full results here.

Spina Bifida Association

PO Box 17427 | Arlington, VA 22216