The second annual Medicine X conference took place at Stanford University’s School of Medicine from Sept. 27-29, billed as “a catalyst for new ideas about the future of medicine and emerging technologies.” The event brought together throngs of Silicon Valley innovators, global health researchers, medical professionals and students, healthcare experts and of course patient advocates all in one place.
Both Mike and I participated in 2012, but despite living nearby, I unfortunately had to miss this year’s event due to family health issues (irony!). However, we’re happy to bring you a comprehensive report today from Nicholas Vu.
About Nick: “I like to classify myself as an amateur pharmacy futurist, technology lover, and student working towards his Pharm.D at the University of California, San Diego. My days are filled with studying, working at the UCSD Free Clinic, and pursuing my entrepreneurial aspirations. I earned my bachelor’s in biochemistry at the University of Minnesota – Twin Cities. I make a mean bowl of Vietnamese pho and occasionally hit the surfs in San Diego.”
A Guest Post by Nick Vu
Glowsticks, M&Ms, and Zoe Chu — the dog — were all aspects of Larry Chu’s excellent Medicine X conference program this last week at Stanford School of Medicine.
As I listened to the myriad ePatient experiences being shared here, ranging from breast cancer survivors to long QT syndrome patients, I realized this heavy skew towards the patient voice is what makes Stanford Medicine X unique from all other digital health conferences. (Did you know there were over 14 major digital health conferences last year?) Lloyd Minor, Dean of the Stanford School of Medicine, urged this year’s MedX attendees to view their time here as the beginning of many encounters to come…
Mobile technologies are already beginning to transform patient care, and Big Data, providing rapidly increased levels of understanding, was a big topic too. Amir Dan Rubin, President & CEO of Stanford Hospital & Clinics, made a statement about how we should utilize Big Data to solve the most important problems of today, not incremental ones.
Overall, Stanford MedX 2013 integrated ePatient success stories with cutting-edge technologies with the aim of developing sound social media solutions, business tactics, and research practices. Pretty stimulating stuff — all in a night-club’esque environment that gave off the vibe of evoking healthcare’s future at a lightning fast speed.
To kick off the string of ePatient success stories, Christopher Snider (a fellow type 1 DOC’er and host of the Just Talking podcast) led a panel discussion including Joe Riffe (a paramedic) and Erin Moore of the blog 66 Roses. Erin shared how her experience with cystic fibrosis and informing the respective community via her social media channels made her feel empowered. Emily Bradley of Chronic Curve supported Erin’s notions with a call to utilize Twitter to “clinically complain” if necessary. Jody Schoger of #BCSM breast cancer community ended the panel with a call-to-action for patients to get active in organizations and committees that could earn research grants in order to “clinically validate” the value of social media use for patients.
Next came the ePatient Ignites talks — a series of patient success stories that could melt your heart. ePatient Sarah Kucharski regailed the audience with a story about her husband who had helped her shave her legs, cook her meals, clean her wounds, do her laundry, and garden her flowers after what she termed “surgeons gutting her like a fish.” She ended her stage time with a great notion: acknowledge your caregiver’s needs. Give them space and time to breathe because caring for a caregiver is caring for yourself. Then ePatient Liza Bernstein gave us her insight as a surviving breast cancer patient: dignity is just as crucial to the patient as oxygen.
Brett Alder talked about using the FeelAlike mobile app to unite patients by helping them share their post-orgasmic illness syndrome experiences (yes, that’s a real medical condition!). ePastient Manifesto advocate Emily Kramer Golinkoff shared her experience with cystic fibrosis and how she timed her treatment with her friends’ schedules so they could all get outside and around together. By joining the online cystic fibrosis community, they all felt empowered. As she describes it, her success with participatory medicine came from “utilizing synergy.”
The final set of ePatient speaker testimonials included Jasmine Wylie, a waitress suffering from long QT syndrome and cardiac arrest. Through social media, she met 1,000 people with her disease. And cancer survivor Terri Wingham was able to recruit other cancer survivors with the use of YouTube, Twitter, and Facebook, allowing her to build the “necessary bridges” she needed to spread cancer awareness. ePatient Michael Weiss highlighted how “patients helping other patients could often be the best medicine.”
Social Media Digs In
Moving on, MedX began to dig into the specific topic of social media strategies for healthcare professionals. Beginning this discussion was Dr. Leah Millheiser of Stanford, who shared experience in women’s sexual health. She pointed out the usual cautions: that “natural” does not necessarily mean “safe” and “unnatural” does not always mean “bad.” 72% of adults believe most health information found on the internet is true, so while there is much value here, we do need to be wary.
A major theme of this year’s MedX was how providers can develop a relationship with a patient on social media channels like Google +, YouTube, Facebook, and Twitter. Thomas Lee and Audun Utengen of the healthcare social media consultancy Symplur started the morning off with a statement about how you never know when the right tweet will meet the right patient at the right time. Marion O’Connor of Oxford University Hospitals, UK, actually stated that the biggest risk in health care social media is not participating in the conversation.
ePatient Dave deBronkart talked about how physicians average 17 years to adopt new practices (!) Dr. Bertalan Mesko, who identifies himself as a “medical futurist,” importantly noted that in the coming years, doctors will not be replaced by robots, but disruptive technologies will be heavily utilized.
In the panel discussion on social media strategies for healthcare, Dr. Mesko talked about how he never utilized social media to post personal information. He also stated that scheduling tweets was “like sending a manikin to a cocktail party.” Dave deBronkart talked about how relying on Google search tools to find the highest-quality information may be unwise due to the frequency of the company’s algorithm changes. Dr. Millheiser ended on the note that ePatients were hard to find in sexual health because they shy away from being so open about these topics.
It became increasingly clear, at this and other conferences, such as the recent WLSA Convergence Summit, that health-related applications of social media are beginning to have a profound effect on prevention and management of chronic illnesses, which account for somewhere between 50-70% of healthcare costs in the U.S.
btw, social media was used at incredible rates during this conference. Organizer Larry Chu reports that the #MedX hashtag went wild, even beating out Justin Bieber for a day!
Mobile Health Tech
Naturally, MedX provided a lively update of smartphone apps and other technologies that could be integrated to inform, diagnose, and perhaps treat patients. Rajiv Mehta of the creators of the caregiver app Unfrazzle noted how 99% of a patient’s life is spent taking care of him or herself. Moreover, most of these tasks are mundane. His mobile application helps patients perform these tasks in quick and efficient way. ePatient Sarah Kucharski of FMD Chat gave a rundown of how her technology diagnosed fibromuscular dysplagia, a disease that consisted of complications of vascular and connective tissue. Dr. Marc Katz of Bon Secours Health System (on the East Coast) pointed out how, as a cardiac surgeon, he believes clinicians should not only strive to follow evidence-based guidelines in their practice, but to go above them.
Roni Zeiger, formerly of Google Health, reminded us that physicians must be mindful that every social media conversation must have informed consent from the patient.
And ePatient Jamia Crockett chimed in with some comic relief, that’s also quite true: patients are often dishonest about their medication adherence with physicians because they don’t want to let them down.
In the “What if Healthcare Were…” panel discussion, moderated by Paul Costello of Stanford School of Medicine, some important topics emerged. One of them of was “digital literacy” both for doctors and patients. We cannot expect either to embrace technology unless they are trained and educated on its use. David van Sickle of Propeller Health (formerly Asthmapolis) brought up the critical importance of making costs more transparent in the digital health start-up realm. And ePatient advocate Regina Holliday noted that spreading patient data without proper consent may make people angry, and therefore instigate change in the healthcare system.
Dr. Michael Painter of the Robert Wood Johnson Foundation presented on OpenNotes, an initiative allowing patients to see the notes their doctors write. Patients were enthusiastic about this idea: 92% of patients across three sites read their doctor’s notes in a recent trial. These patients felt more in control of their care and had a better understanding of their health conditions. To move forward with OpenNotes, Dr. Painter says they need to overcome physician time restraints, technological barriers, data volume overload issues, and confidentiality concerns.
Josh Stein of AdhereTech (just profiled by Amy in Diabetes Forecast), received the only slot for a start-up to pitch their company at Stanford Medicine X. Josh explained the $300 billion medication adherence issue plaguing the United States. He then described his bottle, laden with sensors on the interior walls, capable of detecting changes in tablet or fluid levels. The 45-day battery-powered bottle is connected to a system that places calls to the patient if the sensors do not detect changes at appropriate times. Let’s hear it for AdhereTech!
The Quantified Self
The Quantified Self Movement is a group of ueber-data-fans using virtually every health technology known to man to monitor their personal health parameters, and then analyze the uses and outcomes for the greater good. Their message: quantifying patient data and making clinical sense out of it is no easy task. Dr. Michael Seid of Cincinnati Children’s hospital told a story about two little girls diagnosed with Crohn’s Disease, who were tasked with identifying stressors in their lives. They knew that their boyfriends were not stressors and spicy food was not a stressor, but coordinating that information with a clinician was an issue. Similarly, Sara Riggare, a PhD student at the Karolinska Institute in Sweden, found issues with correlating the frequency of her Parkinson’s Disease symptoms to her medication adherence statistics. Ian Eslick, health entrepreneur launching Vital Reactor, brought up how quantifying cystic fibrosis symptom frequency for a patient saved her 14 days of antibiotic treatment when the patient showed that data to her physician. Sonny Vu (no relation to this article’s author) of MisFit Wearables, makers of the Shine, went into detail about how patients only want to wear sensors on their bodies if it looked and felt good.
Vu jump-started the discussions with a statement on how vanity could be a key driver behind people being more physically active. Also stirring some controversy was his assertion that knowing what patients want in products is not their job (a line from Steve Jobs) and that it does not make sense to impose the hard work of product design onto patients. Instead, we should be watching and listening to patients to see what their needs were.
Perhaps most controversial was Vu’s assertion that a key reason many diabetes patients don’t measure their blood sugar levels is that they “do not want to know the number.” He reported that blood glucose testing was lacking mainly due to three reasons: 1) Patients did not want to know the result, 2) They were ashamed, 3) They felt hopeless. This set off something of a firestorm across the diabetes community, I understand. But another speaker referred back to the ubiquitous data-syncing problem, and Vu did suggest that patients might be more motivated if technologies like Diasend and SweetSpot could consolidate insulin pump, CGM, and BGM data into one place.
Jon Kiehnau of Spree, the so-called “NetFlix of health groceries,” talked about the importance of understanding the patient’s relationship with food. The average grocery store has 450 different products, and his group works with grocery stores to “bring a mountain of information to supply chain management.” John Ivo Stivoric of the wearable sensor provider Jawbone, made a quotable soundbite with “sitting is the new smoking.” He also believes there are “no great tools to consolidate data.”
Researching Digital Health
Another topic in dire need of being addressed was the role of clinically validated research in digital health. Who better to address this topic than the fine staff at the Patient Outcomes Research Institute (PCORI) in Washington, DC? Of all of the criteria PCORI looks at when reviewing grants, they rank the qualities of “patient-centeredness” and “patient & stakeholder engagement” at the top of the list. (Though we wonder how these are defined?)
Ming Tai-Seale of the Palo Alto Medical Foundation Research Institute explained how their findings showed that patients were often loathe to complain when things weren’t going well, because they fear being labeled a “difficult patient” who may then experience reductions in quality of care.
Stephen Friend announced a new cloud-based collaborative science platform called BRIDGE — launched at MedX. It will allow the public, researchers, and funders to collaborate to perform sound clinical research. He mentioned Lund University’s work in diabetes as an example of the “bridging” technique.
On Day 2, entered from stage right the 15-year-old pancreatic-cancer wonder boy commonly known as Jack Andraka, who attends Johns Hopkins University. He talked about how pancreatic cancer tests were $800, scientific articles cost over $1000, and 0.008% of people in the world have access to research results and other scientific information, and he called for a solution to the knowledge deprivation to certain classes of humanity. This is critical because knowledge is the great equalizer of the world; whether you are white, black, or Hispanic, Asian, etc., the right to knowledge access should fundamental to all, he said.
Business of Digital Health
Digital health is now a thriving business. MedX held a series of “Master Classes” this year, in which experts provided intense courses on specific topics. One on crowdfunding in healthcare was run by Sonny Vu of MisFit Wearables, who emphasized the importance of creating a meaningful, clear, and relevant story for your consumers. He also outlined the preferred frequency of e-mails, when to embargo articles about your company, and how extending the deadline of a crowdfunding campaign more than once can put a company at risk for losing the trust of its consumers and investors. Vu also talked about the importance of responding to 300-400 comments per day on the crowdfunding website within 30 minutes, otherwise the reviewers will lose trust (whew!) He also shared details on the differences between Indiegogo and Kickstarter (with Indiegogo being a superbly better experience for the MisFit team). Pricing at $99 was a magical number, it seems.
Also, what good are mobile apps and digital health devices without proper design? Dennis Boyle of IDEO and ePatient Nick Dawson led the IDEO Design Challenge, which allowed groups to go through the step-by-step process Boyle’s company undergoes to create. Various patients chimed in on how to frame the right “problem statement” in order to design to patients’ real-world needs; this is not as easy as it sounds!
Roni Zeiger continued the Design Thinking theme with a Master Class on how he designed the new SmartPatients’ user interface. “Draw something that brings incremental improvement, then iterate over and over again.” Yang Yu of OpenCare, a provider search site for consumers, suggested that we “design from a servant perspective” with the emphasis on relieving the user of tasks. The discussion then moved to the use of rapid (5-day) prototyping in academic institutions. The general conclusion was that it was very difficult to rapid prototype due to requirements of intense pre-execution planning and post-execution analysis — in other words, big organization processes slow things down. Right.
Similar to the WLSA Convergence Summit 2013, the consensus among speakers at Stanford Medicine X was clear: the activated engaged patient will disrupt the current healthcare system. Challenges still remain, including establishing a patient-centric view of chronic disease management (!), and digital health is still in its nascent stages. But the community in attendance here was confident that the electrical engineers, allied health professionals, computer scientists, entrepreneurs, and policy makers are making rapid strides toward improving care AND the patient experience.
You can delve into more coverage of Medicine X by searching the hashtag #MedX, and visiting their YouTube channel and Flickr photo feed. See also: MedX posts by diabetes ePatient participants here, here and here, as well as podcasts on DSMA Live and Just Talking.