Medicine X yesterday featured a series of talks on a topic that is near and dear to the heart of many conference attendees: Empowering and engaging patients. Marty Tenenbaum, PhD, a former consulting professor of computer science at Stanford, began the session with a moving talk on how difficult and frustrating it was to find the right therapy after he was diagnosed with metastatic melanoma 17 years ago."I spent a lot of time in the stacks of Stanford reading medical journals. They all agreed on one thing, which was my dire prognosis. I thought, there's gotta be something better than this," he said. Tenenbaum's ordeal prompted him to create a nonprofit, called Cancer Commons, which helps connect cancer patients to the therapies that have the best chance of curing them.
Howard Look, president and CEO of the app Tidepool, said it "was like crawling through broken glass" to get access to his daughter's blood glucose data when she was diagnosed with type 1 diabetes in 2011. "We quickly discovered how hard it is to calculate the right dose of insulin," Look said, driving the point home by showing a series of texts he once received from his daughter, Katie:
Katie: "Dad, I'm low. I'm 52 and dropping."
Howard: "That's okay, you have your juice boxes right?"
Katie: "I can't find my juice boxes."
Howard: "I'll come get you."
Katie: "I don't know where I am."
"This is a scary moment if you are a parent," he said. "You might think that when the stakes are this high there must be a way to manage your diabetes with some sort of software or app. At the time, there wasn't one." This motivated Look to design an app that helps diabetic patients get and use to their blood glucose data effectively. "When you liberate the data, you empower the patient and enable them to engage however they want to engage," Look said.
Next, Brian Loew, founder and CEO of Inspire, talked about the online community of patients and medical professionals in that social network. Many patients have reporting feeling more able to discuss certain issues with their doctors after first talking with their peers in Inspire, he said. "How do I travel with a wheelchair? How can tell my kids I have cancer? These are questions that are often easier to ask of a person who has done or experienced it," Loew explained.
Stanford clinical professor Nancy Morioka-Douglas, MD, MPH, spoke of the power of patient engagement through what she calls "stealth intervention." Morioka-Douglas created the Stanford Youth Diabetes Coaches Program after "everyone raised their hand" when she asked a class of students she was teaching if they knew a family member with diabetes.
The program works by teaching high school students to coach their diabetic family members to better health by asking: "What one thing will you do to be healthier this week?" Morioka-Douglas said "the beauty of this program" is that it involves patients' loved ones in their care and she noted that "coaching yourself likely wouldn't be as successful." Many of the student-coaches have reporting benefiting from the program, too: "I learned how to set small goals and accomplish them," said one student in a video interview.
"I think everyone wants to be empowered," Morioka-Douglas said. "But there are barriers. People feel impotent, busy; they're used to a culture where doctors tell them what to do. It's about creating a warm supportive environment where they can" feel in control.
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Photo of Nancy Morioka-Douglas courtesy of Stanford Medicine X
