Cheyenne Hennen: Lived Experience as a Bridge Between Patients and Providers

This article is part of a larger series of articles on the UPMC Adult Spina Bifida Clinic. Visit the series main article for links to other article in the series.”

Cheyenne Hennen, BA, has spent her life navigating the medical, rehabilitative, and self-management challenges associated with spina bifida. Her early experiences with both supportive providers and those less familiar with her condition shaped her understanding of the health care system and now inform her work within the UPMC Adult Spina Bifida Clinic.

Those formative years also honed skills she would later rely on professionally. Learning to advocate for herself was essential, particularly during the transition from pediatric to adult care, when the tightly coordinated pediatric environment gave way to a health care system that expects greater independence.

“Spina bifida is something you learn to live with every day, but the health care systems people navigate do not always make it easy to do,” Hennen says.

From Patient to Program Team Member

Hennen joined the UPMC Adult Spina Bifida Clinic in August 2024 as a research coordinator, bringing professional skills and the lived experience of being a patient in the program. Before her hiring, she participated in the clinic’s Peer Navigation Program, where she was paired with a mentor and gained exposure to the clinic’s operation and resources. That experience not only strengthened her connection to the program but also led directly to her current staff role.

As a research coordinator, Hennen supports multiple aspects of the clinic’s operations, including patient education, technology implementation, data management, and collaborative research. She often works as a go-between with patients and providers, translating the realities of daily life with spina bifida into actionable program improvements.

Her work includes welcoming new patients, introducing them to available services, and assisting with self-management tools, such as the iMHere digital app. She collaborates closely with fellow Research Coordinator Sara E. Izzo, BA, to collect and maintain patient data for the National Spina Bifida Patient Registry (NSBPR), ensuring that the clinic’s patient population is accurately represented in this national database important to ongoing and future research projects.

Promoting Self-Management Through Technology

A core part of Hennen’s role in the clinic involves promoting and supporting patient use of the iMHere app, a digital self-management platform developed at the University of Pittsburgh for individuals living with spina bifida. The app enables users to track key health metrics and also offers educational modules and customizable reminders to encourage adherence to care routines.

Access to the app is provider-directed. Once prescribed, patients receive a secure download link and individualized guidance. On the back end, clinic staff can monitor engagement data and identify when additional support may be needed. Hennen demonstrates the app during patient visits, provides training, and creates tutorial materials to ensure patients understand how to use it effectively.

“Once you prescribe it, patients are often interested,” Hennen says. “Continued communication and encouragement are essential for creating durable self-management success.”

Building Research Infrastructure

Hennen’s research responsibilities extend beyond daily clinic operations. Through the NSBPR, she gathers demographic, medical, and functional data that help evaluate long-term outcomes and guide quality-improvement initiatives. She coordinates with colleagues who manage follow-up and patient engagement related to registry studies, ensuring data accuracy and continuity across visits.

The NSBPR is a cornerstone for understanding trends in adult spina bifida care and developing evidence-based interventions. Hennen’s firsthand knowledge as both a patient and research professional adds a critical perspective to the data collection process.

A Dual Perspective on Care

Having been a patient and now a staff member, Hennen understands the value of a clinic where providers already understand the complexities of living with spina bifida.

“As a patient, I could share what I was dealing with, and Dr. Dicianno already understood. It’s not like seeing a doctor who has never treated spina bifida before and having to justify or explain everything from scratch,” Hennen says.

Her experience also highlights a common challenge that many in the spina bifida community continue to face, which is limited familiarity with spina bifida among general medical providers. When patients require care outside of specialty programs, this lack of knowledge can lead to anxiety, frustration, or suboptimal care.

“It makes me apprehensive to go to a new doctor because I’ll likely have to explain my history again and hope they understand the disability perspective that comes with it,” Hennen says. “So, while our clinic is a safe space for patients, I also look at it as an educational entity for health care providers.”

Helping Patients Find Their Voice

Hennen works with patients, especially those transitioning from pediatric to adult care, to strengthen their confidence and communication skills. She encourages patients to prepare questions, describe their symptoms clearly, and understand their medical history so they can engage more actively in conversations with any of their health care providers.

“I know how intimidating it can be to walk into a room full of providers and feel like you don’t have a say,” Hennen says. “Part of my job is making sure patients realize they do have that voice and how to use if effectively.”

Extending Impact Through Communication and Resources

Hennen also contributes to the UPMC Adult Spina Bifida Clinic’s monthly newsletter, published on the clinic’s website quarterly. The newsletter shares updates on upcoming events, community resources, and educational content relevant to patients and families. Articles are written by staff based on emerging topics or patient requests. The newsletter allows the UPMC Adult Spina Bifida Clinic to reach beyond clinical visits to foster awareness and connection within the community.

By disseminating timely information, the clinic ensures that both patients and external providers remain engaged with current developments in adult spina bifida care.

Collaboration With the Human Engineering Research Laboratories

Beyond her clinic role, Hennen contributes part-time to the University of Pittsburgh Human Engineering Research Laboratories (HERL), where she supports student-led projects aimed at improving assistive technologies. Recent projects include the development of an adaptive wheelchair cushion designed to enhance comfort and reduce pressure injury risk. Her perspective as both a user and a researcher helps ensure that product designs reflect real-world function and accessibility.

“I can see a greater role for integration between HERL’s innovative engineering work and the clinical environment to provide opportunities for patients to express themselves and participate in design processes that reflect their lived realities,” Hennen says. “HERL is an amazing lab with amazing researchers, science, and engineering happening. It’s rewarding seeing that work in action and knowing what it’s trying to achieve.”

Addressing Persistent Gaps in Provider Knowledge

Despite growing awareness, many providers outside specialty clinics remain unfamiliar with the lifelong complexities of spina bifida. Hennen emphasizes that this knowledge gap can affect even routine care and advocates for broader provider education.

“People with spina bifida still get all the same health problems as everyone else — but with added layers providers need to recognize,” Hennen says. “If you don’t understand how spina bifida affects the body, you could easily miss something important.”

Her message to clinicians: even without deep expertise, openness and curiosity go a long way. Listening to patients’ lived experience helps bridge knowledge gaps and fosters better outcomes.

Shaping a Culture of Empathy and Trust

Hennen believes that including professionals with lived experience in clinical teams transforms both patient engagement and provider understanding.

“I see my role as practical in offering guidance that is immediately applicable to a patient’s daily life, but also symbolic in demonstrating that adults with spina bifida can hold professional roles, contribute meaningfully to health care delivery, and live full, independent lives,” Hennen says. “Sometimes just seeing someone who has been where you are makes a difference.”

Future Thoughts

Looking ahead, Hennen hopes to see the clinic expand its peer mentorship opportunities, increase its use of digital self-management tools, and strengthen provider education across medical specialties. She also sees new ways for patients to connect outside clinical settings to build stronger community support.

“Every story we share, every piece of feedback we give, helps make the system better for the next person,” Hennen says.

Her work, positioned at the intersection of advocacy, research, and technology, embodies the UPMC Adult Spina Bifida Clinic’s mission to ensure adults with spina bifida receive care that is informed, coordinated, and enriched by lived experience.