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Unique OHSU program trains future clinicians to address needs, challenges of patients with disabilities

Patient-first disability awareness education to help OHSU physician assistant, other students better serve patients
Michael Steen riding his recumbent bike.
Michael Steen loves riding his recumbent bike. “It’s wonderful exercise,” he said. “People should try it.” (Courtesy/Michael Steen)

Michael Steen has many things.

He has a career as a community banker in Portland. He has a degree in business administration from Linfield College. He has a membership in the Portland Pearl Rotary Club, where he co-chaired its Social Justice Committee. He has Oregon roots, a thing for healthy food and a recumbent trike. “It’s wonderful exercise,” he said. “People should try it.”

And he has cerebral palsy, or CP, a neurological disorder that can affect muscle control and tone, coordination, and sometimes cognitive abilities, as well.

“While in my personal circumstance, the severity of CP is minimal, disability is nevertheless an impactful component of my life,” he said. “It provides a certain amount of richness to embrace and a unique perspective to live from.”

This spring, Steen joined other people with disabilities at several sessions of disability awareness training as part of the “Principles of Professional Practice” course series that all first-year physician assistant, or PA, students at OHSU take. The training, launched four years ago, involves a lecture, panel discussions and role-playing scenarios in which students practice taking an actor-patient’s history or explaining the results of testing or a treatment plan.

The goal, said Lillian Navarro-Reynolds, M.S., PA-C, associate professor, Division of Physician Assistant Education, OHSU School of Medicine, is to familiarize PA students with the needs and challenges people with disabilities face as they access health care, and to help students improve collaboration and patient outcomes.

Patient-first approach

The OHSU PA Program is one of only a few in the nation to not only require first-year students to learn about the health care perspectives of people with disabilities, but is among a handful to also to take a patient-first approach in which people with disabilities assist with the training design and participate in the instruction.

Steen contributed important insight to “Taking Charge of My Healthcare,” a toolkit for people with disabilities, and he gave several recommendations to PA students as part of his instruction:

  • If you don’t understand what a patient is trying to express, ask for clarification. It’s not disrespectful to explain you don’t understand; it honors the patient and the importance of what that person is communicating. 
  • Don’t be afraid to ask investigative questions, such as how a health concern might relate to an individual’s disability.
  • Above all, have a friendly demeanor.  

“A clinician’s bedside manner is a matter of life and death for people with disabilities,” Steen said. “If we have negative experiences, we’re less likely to engage with the medical community and follow instructions and recommendations.”

Building practical skills

PA student Morgan Logan was one of 30 students who participated in the spring training. One of her biggest takeaways, she said, was remembering to discuss concerns with patients directly, and to only speak with an accompanying caregiver as needed. She also learned to slow down her fast speech pattern and to allow plenty of time for patients to process and respond to information.

“I definitely have a better understanding of what people with disabilities need from their providers now,” she said. “I’m glad we had that opportunity to learn.”

The student training, said Navarro-Reynolds, builds practical skills such as effective communication when gathering patient information or providing education; managing overbearing caregivers in the exam room; and, writing chart notes that aren’t biased or discriminatory.

To host the training, the PA Program partners with another leading-edge OHSU program: the OHSU University Center for Excellence in Developmental Disabilities, or UCEDD. As a flagship center of the OHSU Institute on Development and Disability, UCEDD is a federally funded center for disability education, research and outreach, now celebrating its 50th year of serving Oregonians.

“We’re moving from a medical model of disability, where the disability needs to be fixed or cured, to a social model of disability, where the external environment and the attitudes of others disable people,” said Rhonda Eppelsheimer, M.S.W., LCSW, co-director of the UCEDD. “People are not defined by their disability. We are teaching future providers to change their assumptions and to reframe their communications with patients.”

The PA Program’s patient-first approach to the training was such a success that it served as a model for similar student trainings in the OHSU School of Medicine M.D. Program, as well as OHSU’s schools of Dentistry and Nursing.

M.D. training

Before medical school, fourth-year M.D. student Emily Hillmer worked as an adaptive ski instructor and outdoor educator, where she taught people with disabilities how to ski and experience the outdoors.

“I found a joy and passion in serving this unique population,” she said. “I wanted to continue to work with people with disabilities and incorporate disability into my medical education.”

As she moved through medical school at OHSU, Hillmer says she noticed some missed opportunities. For example, she said she didn’t learn how adapt a physical exam for a patient in a wheelchair or how to gather a complete history from a patient with a cognitive impairment. She set out to address this need.

The result is a term-long elective course co-directed by Eppelsheimer, in which M.D. students learn a foundational approach to disability, starting with medical and social models of disability and basic disability awareness. Students then move into workshop sessions, where they develop hands-on skills that they might need in a clinical setting, such as having an American Sign Language interpreter assist with communication during a patient exam or helping with a safe transfer from a wheelchair.

Those sessions are followed by a clinical skills exam session, where volunteers from the community who have disabilities join the class as mock patients, and students are asked to perform components of a patient history and physical. The disability advocates provide real-time feedback to assist students with their skill development.

Additional topics in the elective course include disability ethics, sexual health and health care providers with disabilities. All the sessions are taught by guest lecturers, such as disability professionals, scholars and community members.

“Our goal is to have the sessions be taught as much as possible by people with disabilities and place their lived experience at the forefront,” Hillmer said. “Our initial data suggests that the course is effective in increasing student understanding of medical versus social models of disability; improving comfort and confidence in obtaining a history and physical from patients with a wide variety of disabilities; and, increasing awareness and understanding of the application of disability-related health care policy, including the Americans With Disabilities Act.”

The long-term goal is to integrate some of the content into OHSU’s required M.D. curriculum.

Greater awareness

That’s good news for people like Steen, who grins mischievously when he explains he’s a just regular, middle-aged man working to keep himself in decent shape and out of a doctor’s office.

“I’m not seeing doctors right now,” he said. “I’m focused on preventive care such as good nutrition, good exercise and seeking out mental health opportunities for myself as needed.”

But, he added, “When I do need to see a doctor, there will be greater awareness within the medical community for disabilities like mine.”

Giving patients a voice

The OHSU University Center for Excellence in Developmental Disabilities’ other co-director is Melanie Fried-Oken, Ph.D., CCC-SLP, a leading international clinician and investigator in the field of augmentative and alternative communication, or AAC. AAC apps and research techniques support children and adults with acquired or developmental disabilities as they experience complex communication impairments.

 

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