Over the past year, the NEURO360 team worked with its partner, the St. Louis Integrated Health Network (IHN) to host nine community listening sessions across the region—hearing directly from nearly 90 patients, caregivers, health providers, patient advocates, and rural partners. This work built on early outreach supported by Dr. Joyce Balls-Berry’s research lab at Washington University. The insight collected will play a central role in shaping how NEURO360 moves forward.
What We Heard
Trust & Long-Term Commitment Matter
Participants emphasized a strong need for true partnership—not one-time consultations. Communities want consistent engagement, transparency, and real influence in decision-making.
Care Navigation Is a Major Gap
Many people feel alone after receiving a diagnosis. Long wait-times, fragmented services, and difficulty accessing specialists—especially in rural areas—create confusion and frustration. Communities clearly see the value of care navigators who can guide them through the system.
Isolation Is Common
Some neurological conditions such as Alzheimer’s and other dementias, Parkinson’s disease and related movement disorders, stroke, brain injury, and serious mood or anxiety disorders can lead to shrinking social networks, stigma, and emotional strain for both patients and caregivers. Faith communities and peer groups are crucial sources of connection, but more integrated support is needed.
Workforce Shortages Are Impacting Care
Limited access to neurologists, rehabilitation services, and behavioral-health professionals is a significant barrier. Participants highlighted long wait times for appointments with providers and burnout among providers—underscoring a need for new workforce pipelines and innovative care models.
Lasting Commitment Matters
Communities expressed fatigue with short-lived projects. They want sustained investment and solutions that outlast any single grant cycle.
Insurance & Affordability Challenges Persist
Many participants said inconsistent coverage and high out-of-pocket costs delay or limit access to rehabilitation and assistive technologies, and unclear billing adds additional stress to managing their care.
Technology Can Expand Access, Even More So, When It Works for Everyone
Tele-health and digital tools offer opportunities to expand access, but impact can be limited if they are not accessible, easy to use, and designed with community input. Digital literacy and broadband access remain real roadblocks for many.
What’s Next for NEURO360
These insights will guide our work in the months ahead as we:
- Build long-term community advisory structures
- Search for ways to strengthen navigation and support systems
- Expand workforce development efforts
- Continue partnering on technology, policy, and health innovations
- Report back regularly to the community on progress
Our thanks to all who participated and to IHN for leading these crucial sessions. Your voices are shaping the path forward for neurological health in our region.
