Blog PostsDec 20, 2023

SBA’s Community-Centered Research Agenda: What It Is and Why It’s Important

What is a Community-Centered Research Agenda?

A community-centered research agenda is a participatory and collaborative approach to research driven by community priorities. It is an approach that involves engaging community members, researchers, and others, equally and as partners. The goal is to enhance understanding of the problem(s), lay the groundwork for change, and as is the case for the Spina Bifida Community-Centered Research Agenda, improve health outcomes for people with Spina Bifida.

 What is the Spina Bifida Community-Centered Research Agenda?

The Spina Bifida Community-Centered Research Agenda is the result of two years of collaboration between the Spina Bifida Association, researchers, health care providers, parents of children with Spina Bifida, and adults who have Spina Bifida. The agenda topics are:

  1. Bowel Incontinence
  2. Urinary Incontinence
  3. Transition
  4. Mental Health
  5. Weight Management and Related Behaviors
  6. Self-Management

Click here to view the complete Spina Bifida Community-Centered Research Agenda.

Why is the Community-Centered Spina Bifida Research Agenda important?

  • Specialists in Spina Bifida care agree that they don’t have a complete understanding of how to provide the best care for people with Spina Bifida.
  • People who need Spina Bifida-informed care confirm that there are gaps in provider understanding of how to care for them.
  • Meaningful research is needed to close these gaps in understanding, and to improve health care outcomes for people with Spina Bifida.
  • Most research proposals and grant applications require involvement from patients. The Spina Bifida Community- Centered Research Agenda provides the patient perspective because it is based directly on the topics that people with Spina Bifida have said matter the most to them and where they feel research is needed.

This session is focused on the six research topics, how the working groups for each were created, the questions being pursued and the collaborative nature of the process. The session also includes members of the Spina Bifida Research Advisory Council presenting an update on each topic.

To view the session recording, click here.