Last weekend, nearly 500 people attended the second-annual Stanford Medicine X conference here. In person, that is. Millions more across the world were exposed to it though the Medicine X Global Access Program’s free livestream of plenary hall sessions and the exponential reach of Twitter. The conference hashtag #MedX was actually top-trending in the U.S. for several hours on Friday, the first day of the event.
Medicine X, a catalyst for new ideas about the future of medicine and emerging technologies, is also a patient-centered event. So, how does this work? Lawyer Maggie Heim, founder of Help Keep a Sister Alive, and an "ePatient" who has battled cancer, made a point to say she had chosen two of her surgeons based on their bedside manner. But at this conference, you won’t find any man-versus-the-machine Industrial Revolution talk claiming humans can't also collaborate with robots. A number of speakers introduced themselves with both a handshake and their Twitter handle, and tweets not only recorded and fueled conference sessions, but also included friendly banter and even invitations to a group dinner.
Participatory medicine, a focus of much discussion during the conference, could be described this way: The patient uses technology, perhaps self-tracking biometrics through wearable devices, conducting research online, and identifying and engaging with patient communities through social media. She shows up to her doctor's appointment with a list of questions and is a partner in - and even, ultimately, the owner of - her own care. Doctors also use data, electronic resources and social media to learn as much as possible about a patient's condition and treatment options, consult with colleagues and respond to questions. At the end of the office visit, which can be spent actually talking instead of taking basic metrics, the doctor asks the patient (as Marc Katz, MD, MPH, chief medical officer of the Bon Secours Heart & Vascular Institute, presented it), "Did I get it?"
Larry Chu, MD, is an associate professor of anesthesiology at the medical school and executive director of Medicine X. He also directs Stanford's Anesthesia Informatics Lab, which produces Medicine X. In his opening address, Chu said, "Whether you're a researcher, a technologist, an ePatient - whoever you are, you belong here." From the microexpert ePatient scholars to wearable medical-device designers, home caregivers to hospital administrators, doctors to academics, attendees clearly viewed technology as a tool to enhance human potential and connections. This is not to say that everyone agreed on the role each should play in improving patient-centered care. A few times an audience member stood at a microphone to voice an underrepresented perspective. Patient advocate and Medicine X artist-in-residence Regina Holliday, for example, challenged her fellow panelists during the "What if healthcare..." session. And viewers present or distant generated thought-provoking responses to all of it on Twitter. Still, hugs went viral in the lobby during breaks, and many participated in walk-and-talk socials led by Zoë Chu, mascot and chief evangelist of Medicine X and French bulldog of Dr. Chu.
The day before the conference, select participants attended the Stanford Medicine X IDEO Design Challenge at IDEO world headquarters to engage stakeholders in improving health in a design setting, and they tackled patient-centered problems as a team. A panel on Sunday moderated by IDEO founding partner and Stanford d.school professor Dennis Boyle unpacked the designers’ and ePatients scholars’ experiences working together. (We’ll have more from him in a later post.) And an adventurous spirit of design thinking pervaded the conference during the three days.
“Innovation does not happen in an environment where there's fear of failure,” Rajiv Mehta, founder of Unfrazzle, said during Friday’s “The interconnected lives of patients and doctors” panel. He added, “Learn fast and move on.” But several times throughout the weekend, excitement over technological innovation and accelerating capabilities of data tracking and collection was put into perspective – that is, what is it all for?
SmartPatients CEO Roni Zeiger, MD, Google’s former chief health strategist, reminded listeners during the “Interconnected lives” panel that “conversations about data without stories are completely missing the point." Patient stories were featured on stage and in Medicine X videos throughout the conference, continually drawing connections between human-centered design and the people it serves. During a session, “The self-tracking patient,” Misfit Wearables co-founder Sonny Vu said that the next stage in wearable self-tracking devices would refine how biometrics were measured and how they become products people will actually wear, rather than seeking new types of data to collect.
Emily Kramer-Golinkoff, an ePatient scholar, shared with conference attendees her experiences navigating a health-care system as a young woman with advanced cystic fibrosis (CF). (And her non-profit foundation, Emily's Entourage, has raised over half a million dollars for CF research in just under two years.) Describing a scary medical emergency that was handled well by her team of care providers, she argued for a coordinated, compassionate and patient-centered approach to be standard of care for the benefit of all. She told me later that by leveraging her master's education in bioethics, her work in health-care marketing and her patient story, she hoped "to bridge a gap in adoption of participatory medicine at the institutional level." She felt participatory medicine was practiced by some providers and not by others. "It’s up to them and their style,” she said. “If you visit a doctor who doesn’t – too bad.” As a result, she said, the health-care system is also missing out on an opportunity to improve the quality of health-care while reducing its cost.
Kramer-Golinkoff connected with Medicine X veteran Wendy Sue Swanson, MD, a physician, blogger and alumna of the same academic program. "I went to her as a sage, someone else who is fiercely committed to this cause," Kramer-Golinkoff said. "And she told me I had to be here, so I listened."
More news about Stanford Medicine X is available in the Medicine X category.
Previously: Image of the Week: Stanford Medicine X 2013, Live tweeting Jack Andraka’s Medicine X keynote, Stanford Medicine X 2013 begins today and Medicine X’s “What if health care…” seeks tweets
Photo by Stanford Medicine X