Learning by Listening: The Health Mentors Program

For decades, Bob Graham has been living with hemophilia, which impairs blood clotting  to stop bleeding. His wife, Jessica, has von Willebrand disease, a condition marked by  deficiency of the clotting protein von Willebrand factor. 

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 relationship with your treatment center for the length of your  life. 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 bleeding 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. 

Better Conversations, Better Care

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.”

Teaching Outside of the Textbook

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. 

Some of the patient participants have lived with their conditions for decades. “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.”

Social Determinants of Health in Focus

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.” 

Students Work Together Across Health Sciences

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. 

Discerning What Matters Most

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.”