The questions that doctors would ask Karen Franklin, diagnosed at age 11 with juvenile-onset rheumatoid arthritis, were inarguably sensible.
What’s your level of pain?Are you able to hold down a job?
But she was interested in different questions about things that meant more to her, personally:
What are your goals right now?
“One thing that was important to me, when I was younger, was to be healthy enough to travel as much as I could because I wasn’t sure if I’d be able to walk when I was older,” Franklin said.
“As a patient, you have other stresses in your life — an ill family member, or maybe you have different goals. My goal of traveling internationally wasn’t necessarily what a doctor might think of.”
She wants to teach budding physicians and other health-care specialists to see patients as individuals in need of more than a textbook diagnosis. Franklin and a handful of others, all patients with a chronic medical condition or disability, initiated the University of Colorado Health Sciences Center’s Health Mentors project this year. The inspiration came from a similar program at Thomas Jefferson University in Pennsylvania.
“It’s an opportunity to understand that patients are people who carry issues with them,” says David Weil, who coordinates the program.
“The more that you understand about that patient as a person, the better care you can give them.”
Each health mentor is assigned a team of first-year students from the schools of medicine, nursing, physical therapy, dentistry and pharmacy. They meet with their teams to talk about their experiences, good and bad, with health-care providers.
For the health mentors, the program is a labor of love. They don’t get paid. They don’t get free health care. They agree to an extensive degree of candor about their health history, what their health insurance covers (and doesn’t cover) and, if they’re willing, to allow students to accompany them on medical, dental and physical-therapy appointments.
The most difficult part of the program is finding a time when the students, already taxed by notoriously heavy schedules, can meet with their mentors.
To supplement the meetings in person, Weil enlisted some of the mentors to create short online video snapshots about themselves. (Watch four of those stories at: .)
In his story, health mentor Jason Regier reflects on how a car accident changed the course of his life.
“Will I graduate college? Get married? Have kids? Would I live a normal life? I realized (why) people commit suicide,” he says, describing what it was like to go from being able to run 5 miles every day to waking up with a spinal cord injury that put him in a wheelchair.
Those stories, and the conversations with their students, have resulted in a seismic shift in perceptions, says Nick Peterson, 60, a health mentor who was diagnosed with Parkinson’s disease 36 years ago.
“They start out with one idea and find out how inexact the science is,” he said.
“You can see the light bulb come on in their eyes.”
That’s what Weil wants.
“My hope is that it will increase empathy among the students,” he said. “That they understand what it’s like to live with a chronic health condition or disability, rather than see these patients as a condition and in terms of textbook stuff. It’s going to be good for the patient, and good for the health- care professional, to understand how to confer in order to make things better for a patient with complex needs.”
At a time when many health-care professionals turn to specialties, that means learning to consult with other members of a patient’s health-care team. That would help avoid oversights like those Franklin experienced when she was hospitalized for an operation to correct a jaw joint eroded by arthritis.
With her mouth wired shut, her tongue swollen from surgery and post-operation medicine muddying her reflexes, she wasn’t allowed to get out of bed by herself. When she needed to use the toilet, she would buzz the nurses’ station but be dismissed because she couldn’t answer when a nurse asked what she wanted.
“It wasn’t communicated from one shift to the next that I couldn’t talk,” Franklin said.
She has another motivation for being a health mentor.
“I would like for people to have a special place in their hearts for people with rheumatoid arthritis,” she said.
“I’d like to convince people to consider going into this as a specialty because we need the doctors. I want them to know something about what it’s like living with my disease so that later, when they come across a patient who has rheumatoid arthritis, they can say, ‘I know a little bit about you.’ “
Claire Martin: 303-954-1477 or cmartin@denverpost.com
Be a health mentor
The Health Mentor program is seeking candidates for the school year beginning in August. Volunteers should be adults diagnosed with one or more chronic conditions or diseases such as diabetes, high blood pressure, asthma, arthritis, cerebral palsy, Parkinson’s, stroke, depression, cancer or others. Volunteers may also have disabilities such as spinal- cord injury, hearing/vision impairment, musculoskeletal conditions, brain injury or others. For more information, call 303-724-8074.
