Abstract
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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.
Meeting
Report
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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.
Social
Media
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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.
Health
Technology
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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
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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
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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.
ePatient Experiences
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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
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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
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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.
Conclusions
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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.
Yours Truly,
Nicholas T. Vu
Pharm.D. Candidate 2015
University of California – San Diego
651-226-0931
