The annual MedX conference at Stanford University is unlike any other healthcare conference. Firstly, because it is simply fabulous -- organizer Larry Chu pulls out all the stops on creating a nightclub-like atmosphere complete with stage and light decor to rival the MTV awards; fresh flowers; an on-site Technology Hub with 3D scanning demos; a wellness room with aromatherapy and a refrigerated medication holding area; and more.
Yet at the same time, Larry has ensured that the voices of patients are strongly infused throughout this three-day event, illustrating the true realities of life as a patient through a series of "Ignite" talks.
An absolute showstopper this year came from our very own Erin Gilmer, of the Diabetes Community (@GilmerHealthLaw), who wasn't well enough to travel but submitted this pre-recorded Ignite talk titled "The Underserved Patient."
(Editor's Note: Brace yourself before watching)
"The underserved are not separate or different from us. The underserved could be any of the people in this room. I'm appalled at times to see how separated people are from those they are ostensibly helping. We need it to be not 'Us versus Them.' Some of us have been or will become them. I AM THEM," Erin says...
A somewhat lighter take came from Sarah Kucharski of the blog Afternoon Napper:
Sarah, too, blew me away with her eloquent approach to the ePatient's call for empathy:
Feel me and include me
We must find ways to work together, even though it will not be easy.
(Our D-Community was out en force, btw: Howard Look of Tidepool and Doug Kanter of Databetes were presenting; Christopher Snider was on hand moderating a panel; and Scott Strange and Heather Gabel were attending on ePatient scholarships.)
In all, there were about 8 ePatient Ignite talks. Videos of these and other MedX 2014 talks are being compiled and posted this week.
The magic of this conference is that it has somehow managed to pair these powerful patient testimonials with creating buzz about the most exciting new health technologies and web stuff -- without any incongruence -- since its inception in 2012. This year, for example, attendees learned about prosthetic hands being produced by 3D printers in a program led by one Dr. Jon Schull. Wow, high-tech!
And in the next breath, we heard about "Safety Net" hospitals from Veenu Aulukh of the Center for Care Innovations in San Francisco. This is a network of hospitals and clinics that take care of the most vulnerable populations with challenging health and psycho-social needs. Veenu encouraged the hall full of healthcare innovators to think about this patient population -- which is "typically not acknowledged at health technology conferences." The best solutions for them might be the simplest things, like text messaging.
Then there were talks about things like "digital citizenship in the medical school curriculum" (getting the next generation of doctors online!), and about "redesigning the food allergy experience" from a group of pediatrician moms who created a series of videos on the topic that went viral. Leading that group was Dr. Joyce Lee, who's also been a huge champion of diabetes and social media.
The list goes on... but frankly, what struck me was the "unofficial" theme of EMPATHY that I picked up on this year. Every speaker, no matter how clinically-focused or academic, seemed to be on-message that the job of healthcare providers is changing. It is no longer just about the mechanics of taking tests and prescribing medications; it is about asking patients, the minute they walk in the door, "What is concerning you most?"
One of the speakers pointed out this excellent presentation from Canadian advocate Randy Filinski titled "Stories Trump Data... Relationships Trump Stories." It talks about the elements of a "good" patient experience, and how providers must move from "doing TO patients" to "doing FOR patients" to the ultimate "doing WITH patients." Amen.
One of the eye-openers for me actually came during the Thursday pre-day MedX event on Healthcare Innovation. There was a panel consisting of four hospital executives (somewhat surprisingly, all women). They were asked to describe where they put their priorities in terms of cost-cutting vs. introducing innovations to improve their hospitals' workflow. Lo and behold, they all talked about working to gain a better understanding of: "What does the patient care about??"
It seems these institutions are being evaluated more and more on patient evaluation forms, often using questionnaires called PROMs — Patient Reported Outcomes Measures. Well, there's something new!
"When I went through medical school, we never saw a patient engagement score. We never discussed the cost of anything. We had no idea of outcomes after the patient left our care... so this is a huge leap to take," said panelist Vivian Lee, who's CEO of the University of Utah Hospitals.
Someone piped up from the audience to address the Stanford Medical School folks on hand: "So have you changed the med school curriculum to teach engagement?!"
From somewhere in the room came the answer: "Yes, the focus is on preparing healthcare professionals of the future. Part of the program now is patient engagement, and we're tuned into quality, cost, and the value providers are trying to deliver."
And to top it off, did you know there was such a thing as a high-level Healthcare Empathy Consultant? Yup, Bridget Duffy of Vocera Communications described how she travels around the country advising major hospitals and clinics on how to improve the basic human experience of patients entering their doors -- "by harnessing the power of actively engaged physicians, nurses and employees."
It turns out Duffy created one of the nation's first programs to improve the hospital atmosphere, and served a term as the Cleveland Clinic's Chief Experience Officer (what, CXO?), the first senior position of its kind in the healthcare system. (She won the Quantum Leap Award for taking the risk to spur internal change in her field and has been featured in HealthLeaders magazine as one of "20 People Who Make Healthcare Better.")
She gave an amazing talk on how hospitals and clinics traditionally "de-humanize" people, starting with taking away their personal effects and stuffing them into humiliating paper gowns with their backsides hanging out. "We take away people's dignity. That has to change," she said.
She was instrumental in convincing designer Donna Karan to redesign the ubiquitous hospital gown. Too bad my local hospital hasn't embraced this yet -- other than at the mammogram center, where the gowns really are like spa robes. Nice.
And finally, on the topic of empathy, there was some great discussion about all these self-tracking devices we're supposed to be enthusiastic about, but mostly aren't -- because "as a patient I'm asked to be measuring stuff imposed on me by others, not the quality of life measures I care about," noted arthritis ePatient advocate Britt Johnson of the HurtBlogger.
"Is it benefiting me to put that data in there? I don't gain that much out of it. My disease is random and can't be quantified," she said.
Well, diabetes can surely be quantified -- perhaps too much. Which is why I found myself nodding vigorously as she added: "The psychology of self-tracking is not addressed enough. It often causes guilt in patients."
And Kyra Bobinet, a Stanford physician and "Engagement Behavior Designer" added that the emotional level of all wearables and devices needs to be better addressed. The first order of business is to make them truly appealing, and if something goes wrong, "let them apologize!" she said.
YES. Wouldn't it be nice, just once, to have your glucose meter or CGM or insulin pump say "I'm sorry"? Indeed, a little empathy goes a looooonnng way... Thanks to MedicineX for highlighting this.