A report on the 2nd Annual Stanford Medicine X Conference, held at the Li Ka Shing Center for Learning and Knowledge, Stanford, CA, U.S.A., September 27th-29th, 2013. The MisFit Wearables Team, in support of the pharmacy profession, sponsored my attendance at this year's conference.
Glowsticks, M&Ms, and Zoe Chu, the dog – these were all aspects of Larry Chu, MD (Stanford Hospital & Clinics, U.S.A.)’s inner child that Plenary Hall warmly welcomed. As I listened to the myriad of ePatient experiences ranging from breast cancer survivors to long QT syndrome patients, I realized what made Stanford Medicine X unique from all other digital health conferences -- the patients. There were over 14 major digital health conferences last year. Already, mobile technologies were beginning to transform patient care, and Big Data, with rapidly increased levels of understanding, was no exception. Lloyd Minor, Dean of the Stanford School of Medicine urged this conference’s attendees to view their time here as the beginning of many encounters to come. Amir Dan Rubin, President & CEO, Stanford Hospital & Clinics, also made a statement about how we should utilize Big Data to solve the most important problems of today, not incremental ones. Stanford Medicine X 2013 integrated ePatient success stories along with cutting edge technologies with the aim of developing sound social media solutions, business tactics, and research practices.
It became increasingly clear, at this and other conferences, such as the WLSA Convergence Summit 2013, that health related applications of social media had a profound effect on prevention and management of chronic illnesses, which accounted for somewhere between 50-70% of healthcare costs in the U.S.A. A major theme of this year’s Medicine X was how to develop a relationship with a patient on social media channels like Google +, YouTube, Facebook, and Twitter. Thomas Lee (Symplur, U.S.A.) and Audun Utengen (Symplur, U.S.A.) 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. Michael Seres (ePatient, United Kingdom) described his battle against Crohn’s Disease after 20 operations. Marion O’Connor (Oxford University Hospitals, United Kingdom) continued his story purporting that the biggest risk in health care social media is not participating in the conversation. Michael ended his story with a point about how patients who ranted on Facebook would have illicited a faster response from healthcare professionals than not.
Moving on, Medicine X started talking about Social Media Strategies for healthcare. Beginning this discussion was Leah Millheiser, M.D. (Stanford, U.S.A.). Her experience in women’s sexual health led her to say 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. She also brought to the table her experience with breast cancer patients. These patients that were on bioidentical estrogen had a considerably higher rate of survival. Dave deBronkart (ePatient, U.S.A.) talked about how physicians average 17 years to adopt new practices. Dr. Mesko identified himself as a medical futurist and how he had always been one in the past while working at Pharma/Tech companies, just now had labeled himself one. He importantly noted that doctors will not be replaced by robots, but disruptive technologies will be heavily utilized.
Panel discussion on Social Media Strategies for Healthcare followed: Dr. Mesko talked about how he never utilized social media to post personal information. He also stated scheduling tweets was like sending a manikin to a cocktail party. Dave deBronkart talked about how using Google search tools was 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 did not want to be that open.
Next, my experience at Stanford Med X regarding social media continued with Wendy Sue Swanson, M.D. (Seattle Mama Doc, U.S.A.) and Bryan Vartabedian, M.D. (33Charts, U.S.A.)’s Master Class “On the Physician Online Identity.” They started off the session with a simple piece of advice – move at the pace you want to move. Do not let the speed of Twitter determine how you use it as a clinician. Dr. Vartabedian shared how he felt he never truly understood his patients until he started reading their Twitter posts. He also said that to build a strong digital footprint, the physician needed to 1) Find mentors 2) Watch/Listen 3) Find an angle. The highlight of the Master Class was the debate over whether or not to share clinical experiences on social media. Dr. Swanson said yes, her institution seldomly stopped her. Dr. Vartabedian said no (referencing an anesthesiologist making lewd comments about his patient’s priapism). What’s your answer?
The final panel I experienced at Stanford Med X was led by Liza Bernstein (ePatient Advisory Board, U.S.A.), Deanna Attai, M.D. (Center for Breast Care, Inc.), and Anne Becker-Schutte, Ph.D. (Blogger, MO). Dr. Becker-Schutte wanted to emphasize that doctors on social media are not looking for more patients. Patients are generally initiating contact with physicians. Dr. Attai pointed out that she had a zero tolerance for trolls. Providers were scared of HIPAA violations when it came to giving clinical recommendations on social media. Finallly, patients should never try to be doctors just because they follow credible clinicians on Twitter.
Another major theme of Stanford Medicine X this year involved the expansion of past smartphones to other technologies that could be integrated to inform, diagnose, and perhaps treat patients. Roni Zieger, M.D. (Smart Patients, U.S.A.) started this conversation off with a quick story about one of his tango-loving patients. This particular patient left Plenary Hall with an inspiring quote, “Live like you’ll live forever and die with your tango shoes on.” Rajiv Mehta (Unfrazzle, U.S.A.) delineated how 99% of a patient’s life is spent taking care of himself. Moreover, most of these tasks were mundane. His mobile application helped patients perform these tasks. Sarah Kucharski (FMD Chat) gave a rundown of how her technology diagnosed fibromuscular dysplagia, a disease that consisted of complications of vascular and connective tissue. Marc Katz, M.D. (Bon Secours, U.S.A.) pointed out how, as a cardiac surgeon, clinicians should not have striven to follow evidence based guidelines in their practice, but to go above them. Dr. Zieger added to Dr. Katz’s statement with some clarity on the potential downsides of technology. Doctors needed to ignore the fact that most of the time they did not know what they were doing. And when those times of uncertainty happened, they needed to go to someone who seemed to know what they were doing, and ask for their advice. Physicians also needed to accept that every social media conversation must have included informed consent. And in chimes Jamia Crockett (ePatient, U.S.A.) for some much needed comic relief. When a patient needed to be given new shots and new oral pills, metaphorical crickets entered the room. She ended on a serious note depicting how patients are dishonest about their medication adherence with physicians because they did not want to let them down.
Next up, the “what if healthcare were…” panel discussion. And Paul Costello (Stanford School of Medicine, U.S.A.) moderated it. Bertalan Mesko, M.D., Ph.D. (Webicina, Hungary) began the discussion highlighting the importance of educating the physicians of tomorrow about social media in healthcare. Dr. Mesko also claimed that society could not expect students to use these channels if we do not train them. If digital literacy existed, we would not need some of these digital health conferences today. David van Sickle (Propellar Health, U.S.A.) chimed in with a comment about the importance of making costs more transparent in the digital health start-up realm. Regina Holiday said that spreading patient data will make people angry and instigate change in the healthcare system. Michael Seid (C3N, U.S.A.) facetiously stated the following in the context of utilizing social media in healthcare – saying “I am human, so that means I understand people is like saying I have a heart, so that means I am a cardiologist.” Similarly, folks that used outlets like Twitter did not necessarily understand how to use it to best help the patient. Building upon Michael’s statement, Stephen Friend, M.D., Ph.D. (Sage Bionetworks, U.S.A.) generalized that social media is the enzyme that is dissolving the original healthcare structure.
The final health technology event I experienced was the “mHealth apps and Patient Empowerment” segment. Trevor van Mierlo (Societe Canadienne du Cancer, CA) dicscussed a very inexpensive digital intervention. Patient-centric clinical trials, while socially beneficial, may not equate out to more data. He concluded, like many others, that we were still in the Wild West era in the digital health space. Peter Killoran (Extormity, TX) gave a presentation on how hacking helped him better navigate the EMRs of his practice. He referred to hackers as Luddites, or people who enjoy designing software and building programs with a sense for aesthetics and playfulness. We needed empowered clinicians who are in control of their own information. He asked, can we hack our way to more effective HealthIT? His solution involved capturing photos of patient information using optical character recognition. Then he integrated those photos with an existing HIPAA compliant data base application (REDCap) API. Michael Painter, M.D. (Robert Wood Johnson Foundation, U.S.A.) presented on OpenNotes, or allowing patients to see the notes their doctors wrote. Patients were enthusiastic about this idea. 92% of patients across 3 sites read their doctor’s notes in this 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 needed to overcome physician time restraints, technological barriers, data volume overload issues, and confidentiality.
Josh Stein (AdhereTech, U.S.A.) 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 calls the patient if the sensors do not detect changes at appropriate times. Let’s here it for AdhereTech!
Quantified Self Movement
So enters the topic of the illustrious quantified self movement. Quantifying patient data and making clinical sense out of it was no easy task. Michael Seid told a story about two little girls diagnosed with Crohn’s Disease. 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 (Karolinska Institute, Sweden) found issues with correlating the frequency of her Parkinson’s Disease symptoms to her medication adherence statistics. Moving to physical activity tracking, Sonny Vu (MisFit Wearables, U.S.A.) went into detail about how patients would have only worn computers if it looked and felt good. Ian Eslick (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.
Immediately following the story-telling came a panel. Vu started the discussion 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. Sara Riggare was asked whether pain scores could be tracked. But to this date, such data was too subjective to be made quantifiable and reliable due to inter-individual variation.
Andrew Hickl (A.R.O., Inc., U.S.A.) led the next panel about Health Data in Context. He focused on the point that applications used by millions of people validates different sources of data. However, he also believed there was too much data out there and there needs to be a way to sync these different streams of data to foster stronger patient-physician relationships. Vu chimed in with a serious issue – 5% of even the techie population were aware of wearable technologies. He also explained why patients did not want to measure their blood glucose levels. Patients did not want to get news if it was not good news. Moreover, 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. But back to Hickl’s syncing problem, Vu suggested Diasene and Sweetspot technologies to consolidate insulin pump, CGM, and BGM data into one place.
Jon Kiehnau (Spree, U.S.A.) talked about the importance of understanding the patient’s relationship with his food. The average grocery store had 45 different products. Kiehnau aimed to work with grocery stores and bring a mountain of information to supply chain management. He also explained gamification through the heliotropic hypothesis. Plants would have grown towards the light and so would gamification have grown towards people. John Ivo Stivoric (Jawbone, U.S.A.) began his thoughts with “sitting is the new smoking.” He also believed that there were no great tools to consolidate data.
Ted Tanner (Pokitdok, U.S.A.) opened his remarks with an impressive fact. Pokitdok had 3 million practioners on the company’s data sets. Why? Because the company followed a very simple rule regarding the design of the Pokitdok website – Keep it simple stupid. They had automatic subscription paying and scheduling. They also tracked their users.
Research of 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, D.C.? Of all of the criteria PCORI looked at when reviewing grants, they ranked the quality of “patient-centeredness” and “patient & stakeholder engagement” at the top of the list. Bill Silberg (PCORI, U.S.A.) headed this company’s efforts and claimed to focus on issues of scientific rigor. Ming Tai-Seale (Palo Alto Medical Foundation Research Institute, U.S.A.) expounded on how patients feared being labeled a difficult patient in research because of potential reductions in quality of care. Samuel Gordon (PCORI, U.S.A.) gave insight into how he had extremely positive experiences with the scientists and professionals he worked with as an ePatient despite his terminal illness. He also emphasized the priceless nature of patient involvement in the treatment discovery process of pancreatic cancer.
Stephen Friend introduced the new “n + 1” model to show how the public, researchers, and funders needed to collaborate to perform sound clinical research. He used Lund University’s work in Diabetes monitoring as an example of the “bridging” technique. He also described how quantifying sleep with iSommeil may have been a useful way to quantify efficacy of sleep medications.
On Day 2, entered from stage right the 15-year-old wonder boy commonly known as Jack Andraka (Johns Hopkins University, U.S.A.). As he talked about how pancreatic cancer tests were $800, scientific articles cost over $1000, and 0.008% of people in the world had access to scientific information, he called for a solution to the knowledge deprivation to certain classes of humanity. There needed to be an abolishment of this middle class knowledge issue, for knowledge was the great equalizer of the world. It should not have mattered if you were white, black, or Hispanic, Asian, etc. But right to knowledge access should have only depended on how you used the scientific information afforded to you.
To kick off the string of ePatient success stories, Christopher Snider (Just Talking Podcast, U.S.A.) led a panel discussion of several ePatients. Joe Riffe (Paramedic, U.S.A.) started by emphasizing how ePatients may not have had physicians that shared their passions for social media in the clinic. As a result, ePatients needed to understand that social media was only a part of who they were. Erin Moore (66 Roses, U.S.A.) shared how her experience with cystic fibrosis and informing the respective community via her social media channels made her feel empowered. Emily Bradley (Chronic Curve, U.S.A.) supported Erin’s notions with a call to utilize Twitter to clinically complain. Jody Schoger (#BCSM, U.S.A.) ended the panel with a solution. We needed to identify that research was a problem. In order to have clinically validated Twitter, get on the committees that could earn you research grants.
And then the ePatient Ignites talk came. If there were ever a series of patient success stories that would melt your heart, these were it. Sarah Kucharski (ePatient, U.S.A.) regailed us 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. Liza Bernstein (ePatient, U.S.A.) gave us her insight as a surviving breast cancer patient. Dignity is just as crucial to the patient as oxygen. Brett Alder (FeelAlike, U.S.A.) utilized the FeelAlike mobile app to unite patients by helping them share their post-orgasmic illness syndrome experiences. Emily Kramer Golinkoff (ePatient Manifesto, U.S.A.) shared her experience with cystic fibrosis and how she timed her treatment with her friends so they could all get outside and around together. By joined the online cystic fibrosis community, they all felt empowered. Her success with participatory medicine came from utilizing synergy.
The final ePatient speaker series ranged from waitresses with long QT syndrome to cancer survivors that helped her cope. Jasmine Wylie (ePatient, U.S.A.) spoke about her experience with long QT syndrome and cardiac arrest. Through social media, she met 1000 people with her disease. Terri Wingham (ePatient, U.S.A.) was another cancer survivor who recruited other cancer survivors with the use of YouTube, Twitter, and Facebook. With the use of social media, she was able to build the necessary bridges she needed to spread cancer awareness. Michael Weiss (ePatient, U.S.A.) highlighted how of patients helping other patients could often have been the best medicine.
Business of Digital Health
To start the discussion of business in digital health, Med X had a Master Class ran by Sonny Vu (MisFit Wearables, U.S.A.) on crowdfunding in healthcare. He emphasized the importance of creating a meaningful, clear, and relevant story for your consumers. He also outlined the frequency of e-mails, when to embargo articles about your company, and how extending the deadline of a crowdfunding campaign twice puts a company at risk for losing the trust of its consumers. 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 again. Vu continued with the importance of optimizing the buying experience. Make sure the campaign video is at the top of the website and is easy to share. 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. Give customers 1 to 2 questions maximum for surveys and make them multiple choice because consumers had a tendency to be lazy and impatient.
Nextly, what were mobile apps and digital health devices without proper design? Dennis Boyle (IDEO, U.S.A.) and Nick Dawson (ePatient Advisory Board, U.S.A.) led the IDEO Design Challenge which allowed groups to go through the step-by-step process Boyle’s company undergoes to create. Britt Johnson (The Hurt Blogger, U.S.A.) shared that coming up with the problem statement came about when communication problems were gone. Katie McCurdy added that the use of a patient timeline helped. But focusing on the technology too much strayed focus away from the involved patients. Natasha declared that starting with the worst solution to the problem was very helpful. Lara found her team spending about 80% of their time on the problem statement.
Roni Zeiger continued the Design Thinking theme with a Master Class on how he designed Smart Patients’ user interface. Draw something that brings incremental improvement, then iterate over and over again. Yang Yu (OpenCare, U.S.A.) interjected with the hypothesis that one should design from a bottom-up approach. Solve a single problem and add incremental value to it. Design from a servant perspective. 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.
Entered stage right, Vinod Khosla, co-founder of Sun Microsystems and head of Khosla Ventures just down the road from Stanford University. Similar to other presentations, Khosla’s was packed with statistics of Digital Health. 40,000+ patients in the United States ICUs may have died from a mis-diagnosis. 80% of what MDs did can be replaced. The best MDs would train systems over 10 years. He continued to opine that if he wanted his child to be a doctor, he would have him study math. He left the stage saying that the average expert had the accuracy of dart-throwing monkeys. And although he may have been wrong on some of the specifics of his firm’s analyses, Khosla Ventures’ overall direction was correct.
Digital Health Gone Global
The third day of the conference started off with updates from around the world. First up was Sarah Cruz, from the Society for Participatory Medicine. As was commonly stated throughout the conference, she re-iterated how the newly engaged patient disrupted the traditional medical model. To expound upon this topic, a model of cooperative healthcare that sought to achieve active involvement of patients, health professionals, caregivers, and others related to an invidividual’s health is needed. The four pillars of SPM were 1) Education 2) Research 3) Advocacy/policy 4) Community. Alan Greene, M.D. (SPM, U.S.A.) gave a quick blurb about the importance of frictionless education in healthcare. Dr. Greene described how physicians were setting up a blood transfusion for him in Guatemala. The physicians only spoke Spanish. Frustrated, Greene yelled “Does anyone here speak English?!” The point of the story was to address the issue surrounding doctors and patients not listening to each other. Katie McCurty (SPM, U.S.A.) finished off with a solution involving holistic medicine and calling for more effort from the patient to speak the doctor’s language.
Next up was the Update from Europe. Denise Silber (BasilStrategies, France) showed the audience a slew of statistics. 4 of the top 10 internet populations were in Europe. 6 of the top 10 languages were spoken in Europe. 22% of physicians claimed that they used a social media network. A few apps were noted as well: My Sugar, iVrach, and Videum Blog. She talked about how a single Tweet could change a patient’s life.
To finish off, Louise Schaper, Ph.D. (HISA, Australia) gave an update about Digital Health in Asia. Similar to Silber’s presentation, Dr. Schpaer’s was full of interesting statistics. Two thirds of Indians were aged under 35 and 50% of the world’s under 25 y.o. population were in Asia. She delineated four strategic areas of action: 1) Enhance leadership, sustainable governance, monitoring and evaluation 2) Increase peer assistance 3) 15 countries represented + 8 development partners 4) Support dissemination of the national e-health strategy toolkit. She also noted that informaticians were the translators of the world: they could empathize with physicians, patients, and IT folks. The perils of failing to invest in health informatics were seen all over the world. She pushed to invest in creating positions for specialist health informaticians. Before leaving the stage, she left Plenary Hall with a bold statement: It is unethical to carry on doing what we are currently doing.
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. Big Data, slews of ePatient success stories, free MisFit Shines, iBGStars, along with a night-club’esque environment, made for a successful Stanford Med X 2013. Challenges still remain, including establishing a patient centric view of chronic disease management. Although Digital Health is still in its nascent stages, the community in attendance this weekend were confident that the electrical engineers, allied health professionals, computer scientists, entrepreneurs, and policy makers will bring forth the future at a lightning fast speed.
Nicholas T. Vu
Pharm.D. Candidate 2015
University of California – San Diego