One particular moment doesn’t stand out about the MedicineX conference at Stanford University this past week. Instead, it was all of the moments!
What I keep coming back to in my mind is the recurring theme of this event: that the voice of the patient is incredibly meaningful, and should be a part of the healthcare process, from beginning to end.
That, IMHO, is was what the three-day MedX conference was all about. A few hundred people came together Sept. 28-30 at the Stanford School of Medicine in Palo Alto, CA. They represented all the stakeholders in the healthcare world: policy-makers, designers, idea innovators, company CEOs, start-up entrepreneurs, venture capitalists, researchers, clinicians, and of course… patients! Many patients.
Thanks to our parent company Alliance Health Networks, that offered over 30 scholarships for e-patients to attend, our patient perspectives made up 10% of the audience. Scholarship winners also spent a lot of time at the microphone (!), giving speeches, and participating in panel discussions and in workshops. And of course we were active on Twitter — using the #MedX hashtag, for those interested in checking out the tweets.
An amazing aspect is that through what’s called the Global Access Program, the whole event was streamed live online for anyone to watch. Those videos are now online for easy viewing.
While this conference focused on the larger healthcare system and a broad lineup of conditions, diabetes certainly had a presence at MedX, from e-patient D-bloggers to presenters like Dr. Joyce Lee who’s research director at MyGlu, and Sonny Vu who helped create the iBGStar during his time at AgraMatrix.
And there were so many D-mentions in various discussions and presentations… which may have included an offhand reference to diabetes being “a plague of humanity”… which ignited some very interesting Twitter conversations!
Some highlights from our time at MedX:
Hands down, this was the biggest highlight of the event.
Many of us cherished the opportunity to not only meet each other for the first time in real life, but also to partake in IRL conversations about what we do and how we go about it in our various disease communities.
A new friend who was one of the e-patient scholarship winners is Britt Johnson Moody, who lives with chronic arthritis and is known online through her advocacy at The Hurt Blogger. She offered this definition for an e-patient: A specialist and expert who is highly educated in his or her own medical condition(s) and who uses information technologies (e.g., Internet tools, social networks, self-tracking tools) in managing their health, and learning from and teaching others.
She also offered a definition for the Stanford Medicine X, Alliance Health Networks e-patient scholar in particular: An educator and role model for other patients and health care stakeholders.
A handful of those patients were selected to give a five-minute presentations, sharing their stories, and in many cases, they moved the audience to tears. Every single one was inspiring, including the powerful presentation by nationally-known advocate and “Walking Gallery” artist Regina Holliday.
A theme of many discussions (no surprise!) was that U.S. healthcare is largely broken because it’s too much of a transactional system stuck in the past and not willing to change. Going forward, we need to change the old paradigm of having a doctor being the one in charge who knows all, dictates instructions, and expects compliance. No, there needs to be more interaction and collaboration with the patient, where treatment is personalized for the individual.
The same applies in device design or hospital room layout; it needs to be patient-centered design from the first to last step, and not just something new and whizzy that may be someone’s resume-booster or fodder for a design award.
On Day 2, an incredibly inspirational speech came from Michael Graves, an iconic architect and designer who is paralyzed from chest down and uses a wheelchair. He had such horrible experiences in hospitals that he began a campaign to change hospital room environments and make them more comfortable and “human-friendly.”
“After eight hospitals, four rehab centers, and a nine-hour surgery, what could I do as an architect to make life in the patient room better?” he asked in his presentation. “That’s where I’d spent my time. It wasn’t exactly Third World, but it wasn’t far from it. I thought that in this country, we just can’t put up with this, so I endeavored to do something about it.”
On the first day, the patients were split into two groups – one at Stanford for a self-tracking symposium and the other group at the headquarters of IDEO, one of the world’s top design firms that’s located right near campus. They ran an IDEO Design Challenge modeled after last year’s DiabetesMine Innovation Summit program, that brought about 30 of us together for a day-long design workshop. That’s where Amy and I spent Friday.
So not only did we get a snapshot of the Stanford campus where all that technology magic happens, but we also got an inside view of IDEO’s ueber-creative HQ – where bikes hang from the ceiling above desks and a green Volvo van has been hollowed out and installed as a “meeting space” smack in the middle of one of the building’s open work areas.
In our workshop, groups of about five or six people each addressed a specific health problem presented by an e-patient. In our case, it was a woman who lives with a muscular condition that makes it very difficult to stand up from a sitting position. She needed some kind of apparatus or aid to make this easier.
We began by scribbling down ideas on sticky notes, and hammered out ideas throughout the day, not once being told “No” but always encouraged that any idea was worth considering and possibly building upon. We went through a process of refining our idea, constantly checking with the “target audience” (our e-Patient). Then we were presented with a table full of materials — markers, pipe cleaners, fabric, glitter, you name it! — and asked to create a visual representation or prototype of our concept.
By the day’s end, our group had created a contraption called the Lift O Stick, which was basically a portable, retractable cane-style device that would use battery power to help lift a person up from a sitting position or help them sit down.
Many other ideas were presented at day’s end, including iPads in the hospital room to adapt care to a specific person. We dubbed our work “patient-designed care” instead of the seemingly hollow term “patient-centered care” that seems overused and a touch meaningless these days.
A parting gift included markers and sticky note pads, and honestly I’ll never look at a sticky note pad in the same way without wondering “What If?”
Networked Patients, Doctors
Two panels on during the main conference on Saturday and Sunday stood out, to me: the first being the “Networked Patient” panel moderated by our own Amy Tenderich(!) That discussion included: Roni Zeiger, a physician who is Google’s former health chief and now CEO of SmartPatients; Dr. Michael Seid from Cincinnati, working on a collaborative network for patients called C3N; and Brian Loew, CEO of the online community Inspire.
A major theme of that discussion was how to get physicians and other professionals “on board” with existing patient-led resources and patient communities. Doctors are currently under-utilizing us patients! Loew made a point that many docs are adopting mobile, online patient networks, but many stalwarts sadly are stuck in a state of “clinical inertia.” Amy hopes that we don’t have to wait for the next generation of doctors to embrace patient networks, to make that a part of the prescription, and Zeiger offered a pact to make that happen now.
The second fascinating panel that stood out to me was made up of physicians who are already “on board.” Panelists were: Wendy Sue Swanson, known as Seattle Mama Doc (@SeattleMamaDoc); Burt Herman, a journalist who co-founded Storify; and Dr. Bryan Vartabedian, who is @DoctorV on Twitter.
These three have embraced social media through twitter and blogs, but a majority in the medical profession haven’t. They recount how many docs say they shouldn’t use social media because “so much can be misinterpreted,” and they feel it’s dangerous.
I loved hearing one of the panelists say that “physician literacy for a digital age is way behind where it needs to be,” and they just don’t understand how to use it, making them effectively illiterate to communicate with their patients effectively — an interesting spin on the whole topic of health literacy.
Swanson said it’s a doctor’s obligation and responsibility to be online and there’s no choice in this tech-savvy healthcare world. She said it’s not about asking doctors to do more, but rather to replace their old-school practices with more modern ones using today’s tools.
Online communication should be considered just as importantly as a diagnosis code, she said.
With 80% of patient consumers going online and 1.4 billion health-related searches per month through Google, health is the fastest growing mobile category. And it’s only going to increase from here. We are all a part of it, and the doctors and designers need to be there with us.
Prescription for Change
On each table in the main hall were battery-powered flame candles, symbolizing how MedX was supposed to ignite the flames of inspiration in our hearts and minds.
Without a doubt, that happened.
This is how I described it in a tweet during the conference: MedX was like someone had bottled up a whole bunch of energy, shaken it up and let it explode into the room.
Before this conference, I can’t say I truly understood what it meant to be an e-patient. That’s changed.
I feel empowered, inspired, excited to work with those in the healthcare world to make a difference and change how the system functions. And clearly, I’m not the only one who feels this way following MedX.
Dr. Larry Chu, the brilliant mind behind this event who made it happen, said that he wants even more patient voices to be included next year!
That is about as refreshing as it gets. And if I might be so bold to use a cliche here: X marks the spot, and I think MedX is exactly where the treasures are to be found in the thinking that’s needed to change this healthcare world.
Regina said it best in her presentation: “If we just talk to each other, we can change health care. You must look at the human face to determine what we do next.”