The pain from her rheumatoid arthritis hasn’t stopped Jennifer Walker from expressing herself — she paints, advocates for the Arthritis Foundation, and engages deeply with the medical community.
“As patients, we are not just our symptoms, we’re not just our disease,” said Walker, a patient advocate, addressing a diverse audience at the Medicine X Ed conference held Sunday at Stanford University.
Walker urged health care providers to recognize that and bring patients into the process of improving care. The “Everyone Included” approach is also the resounding goal of the patient-centered annual conference.
“The purpose is to bring stakeholders together,” said Dr. Larry Chu, executive director of the Stanford project, Medicine X. “Inclusivity has to start somewhere.”
The weekend conference brought together health care professionals, patients and educators to create new ways to train future physicians — in which they learn not only from practicing doctors, but also from engaged patient advisers who can bring more empathy and personal care.
“We need to realize our education needs to catch up with what our patients need, what our system needs,” said Dr. Claiborne Johnston, Dean of Dell Medical School at the University of Texas at Austin. Medical education has barely evolved since 1910, even though research has advanced medical knowledge, he added.
One of the most effective ways of making medicine more inclusive is to have doctors, nurses, pharmacists, social workers, psychologists and occupational therapists all work together to learn about each patient as a person, and help them manage their care.
“We want to ask the patient what matters to you instead of what is the matter with you,” said Dr. Sook-Lei Liew, an occupational therapist at the Keck School of Medicine in Los Angeles. “We have to become collaborators in their care and help them achieve their goals.”
To bring this into practice, medical school programs across the country are starting to bring engaged patients into the classroom, allowing them to share their story and become more than just a statistic in a textbook.
Andrea Downing, a patient advocate who had a double mastectomy in 2012 shares her fight against breast cancer with medical students at the Weill Cornell Medical School in New York. “The students say to me, ‘This is one of the best things I’ve experienced in med school so far,’ ” she said. “When you see the living person, it changes the culture.”
Studies show these experiences make health care providers more empathetic to the needs of their patients, and promote holistic care.
Virtual reality is another innovative method being used to evoke empathy in medical students. The Chicago-based Embodied Labs, for example, uses virtual reality to give people the experience of walking in someone else’s shoes — to feel what it might be like to be visually impaired or paralyzed. The embodied experience allows physicians in training to understand how a disease or a condition might affect a patient’s daily life, so they can help create innovative solutions to manage care.
Medicine X is one of a handful of medical meetings in the world that values patient voices in medical education and decision-making. “Everyone Included is an evolving conversation,” said Chu. “It’s not a book that is fully written.”