What does it mean to be brave in the context of health care? From a young man struggling to change perceptions of autism to researchers striving to see the world through their patient’s eyes, the speakers on yesterday afternoon’s “Everyone included/precision medicine” panel at Medicine X, which was moderated by the White House’s Claudia Williams, embodied bravery.
The session started with the inspiring story of Dillan Barmache, a non-verbal 16-year-old with autism. In the 7th grade, his work with a communication therapist opened his world as he began to develop the ability to type out his thoughts. Today, he’s working towards his high-school diploma, running half-marathons and fighting to change society’s perceptions of autism by, in part, starring in a short video in celebration of Autism Acceptance Month. As he explained to the audience, via typing, “Always when a person meets me I’m determined — like a resolute warrior — to show them that autism doesn’t mean I don’t have thoughts or can’t communicate.” Dillan, and other “typers” like him, challenge us to consider that someone’s inner experience is likely quite different than our perceptions of that experience.
Michael Seres took the stage next. Diagnosed at age 12 with Crohn’s disease, Seres has spent his entire life on the patient side of the table; he now works as both as an advocate for others and — as part of the growing wave of patient-entrepreneurs — founder of the health tech company 11Health. He told the audience that as he developed his products, it became about co-creation and asking the personal questions about what outcomes matters most to individual patients. “Bravery starts with the willingness to have a conversation and to listen” to important stakeholders, he explained. This new, more inclusive approach means that patient voices are not only being heard but are radically changing the discussion.
Both speakers Sally Okun, vice president of advocacy, policy and patient safety for online patient network Patients Like Me, and Craig Lipset, a head of clinical innovation at Pfizer, broadened the discussion by focusing on enhancing the patient role in research. Lipset described how he’s been working to incorporate the voice of the patient into the design of research studies, and he argued that an important next step is for data generated from patients’ participation in trials to be shared with the individual patients. (“It will be transformational — not just for patients — but for research period,” he declared.)
Okun also talked about the federal Precision Medicine Initiative and its ambitious enrollment goal of 1 million people. Enrolling so many people is the easy part – creating and sustaining high levels of patient engagement is the difficult part, but she believes that giving patients more access to their own data and encouraging them to continue to courageously share their personal experiences will be the key to success.
Speaker Nick Dawson, executive director of the Johns Hopkins Sibley Innovation Hub, capped off the panel by noting, “There’s this incredible opportunity to say to patients ‘What is it that you would like us to work on as researchers? What would help you live your best days?’” As the voices of patients like Dillan, Michael and others are heard, the opportunity for all patients to be heard and to have these better days can only grow.
Previously: On the first day of Medicine X, talking disparities, adversity and hope and At Medicine X, talking about owning one’s data and about patient-tailored health care
Photo, of Dillan Barmache and his communication partner, Deborah Spengler, courtesy of Stanford Medicine X