Learning by Listening: The Health Mentors Program

By Keith Gillogly

For years the Grahams have been attending medical appointments, monitoring their health, stocking emergency medicines, and talking to doctors, lots of doctors.

“Sometimes you’ll have a lifelong relationship with your treatment center. It’s a much more intimate relationship than you typically have with care providers,” says Bob Graham.

After all that time in the doctor’s office, their advice to health care providers is simple: be curious and ask questions. 

Bob and Jessica are also both participants in the Health Mentors Program. The program is an immersive educational experience that pairs students in the Jacobs School of Medicine and Biomedical Sciences, and other UB health sciences schools, with individuals living with chronic blood disorders.

In collaboration with Western New York BloodCare, a nonprofit that provides comprehensive care for patients with blood disorders, student participants learn all about their health mentors’ lives and living with a chronic condition.

In over five years, the program has engaged more than 175 health sciences students, continuing to shape their approach to patient care and supporting interprofessional learning that goes beyond the clinic and beyond the classroom.   

As health mentors in the program, Bob and Jessica have witnessed how taking time to talk makes a difference. Students in the program meet with their health mentors several times to discuss the mentors’ health, well-being, and any challenges in detail.

Through these extensive conversations, Jessica says she realized the need to better manage her own care while still prioritizing her son’s care. Her son was born with a more severe form of von Willebrand disease, requiring careful monitoring, weekly infusions, and frequent hospital visits.

“Having students who were willing to ask questions from a new perspective that could challenge your thinking or approach, that was helpful,” she says.

Clinical immersions and experiences working with real patients are central to the curriculum in the Jacobs School and UB’s other health sciences units. But the Health Mentors Program augments these experiences and includes different dynamics, says Michael J. Oldani, PhD, executive director for interprofessional education and clinical associate professor of pharmacology and toxicology in the Jacobs School.

For one, students meet the patients in their homes, in their communities, on campus, and virtually. “Participants meet the health mentors in their world ­— not in the clinic,” Oldani says.

These patient interactions aren’t just one-offs or check-ins; they’re much more extensive, building longitudinal relationships while working to create a report and care plan for the patient participant. Student participants, Oldani says, are there to learn, not to be graded.

“You don’t have an attending saying you’ve got this right or wrong. You have a patient saying, ‘Here’s the life I live, I want you to learn about this,’” says Oldani, who codirects the Health Mentors Program along with Jessica S. Kruger, PhD, director of teaching innovation and excellence and clinical associate professor of community health and health behavior in the UB School of Public Health and Health Professions. 

Kruger concurs and emphasizes the real-world impact of these interactions.

“The action plans and ideas developed with students are practical and usable,” Kruger says. “These often include helping mentors organize questions for medical appointments, think through barriers they’re facing in their care, identify support resources, or find clearer ways to communicate their priorities to health care providers.”

While the Health Mentors program isn’t taken for credit, student participants receive a stipend. Students can also earn a digital badge toward completion of the Interprofessional Collaborative Practice Micro-Credential, which recognizes their competency in interprofessional teamwork and practice.

Through the program, students learn plenty about treating and managing various blood disorders. But they also hear and learn from the mother who’s afraid to simply let her bleeding-prone kids play outside, the person beset by chronic pain, or the patient who spent years seeking a diagnosis.

For some patients, their conditions span decades of lived experience. “In these cases, the patients are the experts,” Kruger says. “A takeaway from this program is to always listen first. And that’s not something you can teach in a textbook. That’s not even something you can teach in a simulation. When you hear a profound story, that’s something you must experience and recognize.”

Student teams discuss just about everything concerning their mentor’s health and well-being: medications, access to care, health history, and provider relationships. But the students also want to know, What’s their diet like? What’s stressing them out? Do they have reliable transportation?

These types of questions reveal social determinants of health, the nonmedical factors that influence health.

Bob Graham notes that, while he’s well-versed in using clotting factor medication, the long commute to appointments, high medication costs, and even the season have all affected his health.

“Right now, a huge barrier to people getting care is being seen as a whole person. Their other circumstances of life are sometimes going to be the bigger barriers to care,” he says. “And if they’re not addressed, then whatever pill you give or surgery you perform, it’s a temporary measure at best.” 

WNY BloodCare has provided diagnostic and clinical services and other forms of health management for people with blood disorders for more than 50 years. About five years ago, the center proposed closer collaboration with UB and provided funding to launch and support the Health Mentors Program.

The center also supported creation of the WNY BloodCare Interprofessional Student Team Experiential Rotations (WISTER) and the Innovation Sprints programs, which provide students opportunities for clinical exposure and creative problem-solving surrounding blood disorders.

The Health Mentors Program is open to students of all years across UB’s health sciences schools. In addition to medicine, student participants come from pharmacy, nursing, public health, physical therapy, social work, speech language pathology, and other specialties.

Michael Horowitz, a third-year medical student and former participant in the program, says he appreciated the student team’s collective knowledge used to tailor care plans. Instead of just recommending a drug, he recalls how student team members from pharmacy and physical therapy first evaluated the drug’s potential effects on mobility.

“This program really highlighted the fact that you are not alone. You have the support. You have these other professions there to help,” Horowitz says.

While the care plans are not direct clinical interventions, the ideas that students generate are actionable and usable, centering on patient goals and finding better ways for patients to care for themselves and others.

Horowitz’s team was paired with an asymptomatic hemophilia A carrier, a woman who had no disease symptoms and unknowingly passed the disease to her sons. It wasn’t until one of them experienced abnormal bleeding that her condition became known.

Since then, she’s been steeped in hemophilia care, Horowitz says, managing her sons’ emergency and prophylactic treatment and navigating an array of appointments with care providers.

Between all the appointments and waking up in the middle of the night during bleeding episodes, she’d grown fatigued. So, Horowitz explains, her student team focused on sleep hygiene and how she could better care for her sons by better caring for herself. 

For Elaye Ekiyor, a third-year medical student at the Jacobs School who participated in the Health Mentors Program in the fall, the experience left a lasting impression.

When participating in clinical rotations, Ekiyor noted the fast pace of clinical work. “You don’t often get an opportunity to really sit with a patient and really understand how a disorder affects their day-to-day life,” she recalls.

While limited time is a hallmark of clinicians, it was a stark contrast to the Health Mentors Program’s in-depth experience. Ekiyor realizes she won’t get hours of conversation with each patient as a future physician, but she says she appreciated being able to develop skills to quickly discern what matters most to patients.

Ekiyor was paired with Bob Graham while in the program. Listening to his story deepened her understanding about how disease affects not just someone’s health but their life.

Graham’s hemophilia limited his career options. Jobs with any risk of personal injury were out, and he struggled to find an employer offering adequate health care coverage given the high costs of hemophilia medication.

“It just showed how people with certain conditions have to think about their future and career in a different way,” Ekiyor says.

Ekiyor adds that simply listening was the most beneficial part of the Health Mentors experience. “Just being able to listen to people and really hear their story and give them an opportunity to speak and advocate for themselves is something that I found to be really important and something that I enjoy.”