On February 21, Larry Chu, MD, announced that Stanford Medicine X would take a hiatus. He shared the following story:
Eight years ago, I posted a tweet announcing my intention to launch my first conference at Stanford. I received a variety of responses, but the one that remains the most poignant is the one I received from a patient, asking me “Have you invited patients to your conference?”
I regretfully had not, and realized immediately that I should probably meet this man.
All these years later, I still remember meeting Hugo Campos at Stanford’s LKSC. We both sat in the lobby as the afternoon sunlight washed over us, and talked about how a health care conference might bring the expertise of underheard voices into its corridors of power to inspire and evoke greater change within the system itself.
Today, I look back at the 130 artists, dreamers, storytellers, and activists who took part in our Medicine X ePatient scholar program, and who truly did inspire and evoke the greater change that Hugo and I dreamed of back in 2010. Today, I think of them, and how proud I am to count them amongst our global Medicine X family.
Stanford Medicine X was, for me and many people, a magical place where we could dream out loud about a different approach to health and health care. I learned so much from Larry and his team about how to create space in my work life for beauty, honesty, empathy, and discovery. Medx helped grow the e-patient movement and, if it ends, I want its spirit to live on at other conferences.
For example, Medx followed the obvious but not universally-adopted rule that conferences about health & health care should include patients and caregivers – “actual sick people” as Casey Quinlan would say. The ePatient scholars added insight and lived experience to the conversation in ways that professionals could never imagine. And by inviting a large cohort each year, Medx ensured there were no token patients, made to feel like they had to represent every disease or condition.
Here are my other suggestions for how other conferences can emulate Medx:
Build a beautiful stage and invest in gorgeous lighting. My personal favorite was the 2014 stage set and lighting designed by Joshua Harms of Vision District (shown above). Videos and photos of your incredible main stage will help build your brand AND make your speakers feel like rock stars.
Give speakers thoughtful, useful gifts like a portrait by photographer Christopher Kern and producer Nikki Kern (examples at left). E-patients who are not professional speakers now have a great head shot to use for their social media profiles.
Hire photographers. The Stanford Medicine X Flickr albums tell a comprehensive story about each conference, from the main stage speeches and break-out sessions to the meals and walking meetings. It’s a visual resource for bloggers and journalists who want to illustrate their stories about the event.
Encourage people to tweet and share what they learn. Medx bills itself as the “most-discussed academic medical program in the world” and it’s true: the hashtag trends on Twitter every year thanks to people in the room AND those watching online. (Oh yes, provide a free live-stream.)
Create a wellness room with (at a minimum) drinks, snacks, low lighting, recliners, and screens showing main stage presentations. At Medx, the patients were the VIPs and every attention was given to their comfort.
Set up all kinds of seating options. Some people like to set their laptops on a table, others want to be able to stand, and many just want to sit in the back rows, listening. Also: leave plenty of room for wheelchairs.
Be inclusive. Have ramps up to the stage. Tape wheelchair paths on the floor as a visual suggestion for people to keep that space clear, even when the conference hallway gets crowded. Designate gender-neutral bathrooms. Exceed people’s expectations about the food options: vegan, gluten-free, with complete allergen labels on every dish.
Give conference attendees a chance to make something – to build, shape & create with their hands. One year we decorated spoons in honor of The Spoon Theory. Another year there was a maker tent with a 3D pen available for people to try. It’s a great way for people to take a break from the hubbub and engage a different side of themselves.
Create a showcase. Medx’s YouTube channel is a comprehensive record of the presentations that have been given over the years. Conference organizers who want to diversify their speaker lineup can browse the videos, checking out all the people who have blossomed under the Medx spotlight.
Invite artists into the conversation about health & health care to push, pull, surprise, incite, and inspire us. Some of the artists who have presented at Medx include: Regina Holliday, Rachel B. Stork Stolz, Gilles Frydman, Yoko Sen, Anthony Carbajal, and Elisabeth Jameson.
Add your own quirky touches. Medx had a mascot — Larry’s French bulldog, Zoe — who charmed everyone who saw her. On a more serious note, Larry is not only a doctor, but also a film-maker and he invested in creating high-quality videos from the beginning. Each one is an extraordinary documentary. See: Julia & Annie Kramer-Golinkoff; Sean Ahrens; Britt Moody; Julie Flygare (just to link to a few).
But these are just my lessons learned. As Larry did at the start of Medx, I turned to the Twitter community and asked:
#Medx teach you, if you were lucky enough to attend or be part of the online community?
The community responded:
I intended to speak about
#btsm at #medx 2015. Ultimately, Hugo Campos convinced me to speak about #transhealth (for the first time, publicly) instead. Afterwards people came out to me, others reached out to say their centers changed intake forms & started advisory boards because of it. Before brain surgery I felt calm and at ease about the possibility of dying knowing that I had lived a life that I was proud of. Since then, my ambitions have skyrocketed – new possibilities you and so many others have helps to create. Full talk here. – Charlie Blotner
#MedX gave me a voice in a world that told me not to talk about my health problems. – @Britta34
As a scientist,
#medx (both 2015 and 16) taught me that even if I designed a study in the best way possible and got amazing results, I would still only have 50% of the information I needed to solve the problem – Bill Simpson
You meet a lot of inspiring people interested in making the world a better place, No matter the extreme circumstances they face!! – Terry Marlin
That products & services aren’t just better when we collaborate w/ patients, but it can re-humanize medicine & those relationships can change everything. Made too many amazing friends to list… – Geri Lynn Baumblatt
#Medx taught me to be gentler to myself & more accepting of myself. Seeing all that the ePatients had done even as they struggled with illness let me acknowledge that I’m a patient with health problems, not just someone who works doggedly to solve health problems. – Doug Lindsay
That collaboration across conditions and situations is invaluable.
#raredisease or things that just don’t “fit in” anywhere had a home at #MedX (and thank you for encouraging me to go! legit changed my life.) – Natalie Abbott
That there really is space for all of us, and when we each bring what we have we can create what we need together – Erin Moore
That wanting to build a stage form which the most difficult stories can be told is possible [and] that e-patient empowerment is greater than the sum of defective bodies and first glances…and that I am proud to be a member of this tribe I never signed up for – Dr. Amy Price
How might we…? Will change my quality of life for the better. – Alan Brewington
That within the chronic illness community there are so many ways to help — but also, so many ways to *be* helped. – Abby Norman
Following online I found people speaking out for my perspective and that there was hope for my life with illness – Kelly Ryan O’Brien
Now it’s your turn: What lessons would you like conference organizers to learn from Medx or other events you’ve attended? Please share in the comments below.
Susannah Fox says
Yes, I just published the list above but I already have another idea, inspired by Frances McDormand’s acceptance speech at the Oscars last night: What if A-list health speakers wrote an inclusion rider into their contracts? That is, a clause that states that they won’t appear at an event unless there are patients and caregivers also in the room as speakers and audience members.
For more info, see Slate’s article,
What’s an inclusion rider anyway?
Carla Berg says
I *love* the idea of stealing the inclusion rider concept and porting it into healthcare conferencing! May this thought go viral quickly 😉
Laura Rosas says
This is a wonderful article. It applies to other sectors as well. For example conferences on economics, housing and poverty should include actual people struggling. Otherwise it’s too easy to create an “us v them” mentality.
Susannah Fox says
Thanks, Laura! Fantastic expansion on the theme.
Mary Gurney says
Susannah — thank you for the article. As a patient and healthcare provider, MedX was the place I got to bring both aspects of my life together. I would like other conferences to include patients in all aspects of programming and planning — not to be just the superficial/token patient representative(s).
Plus, I love the idea of stealing Frances McDormand’s idea of “inclusion riders”!
Susannah Fox says
Thanks, Mary! If you have time, I’d love for you to share more about your perspective as a health care provider. There’s been some conversation on Twitter today about how it’s often patients saying “include us!” and clinicians/conference organizers saying “why?” Can you share your reasons why?
Mary K Gurney says
Susannah – as a healthcare provider I want to hear the patient voice included in conferences for several reasons:
1) the patients participating and presenting at a healthcare conference are engaged patients, which many healthcare providers may not have experienced;
2) patients provide the rest of the pieces of the puzzle — be it health IT, user experience, SDOH, etc — without the patient’s stories, healthcare providers, health IT, and other groups can make all the changes that they want and it won’t impact and improve patients lives until they are included in design and open discussions about the issues that they face;
3) There is a wide range of patient engagement (from the patient perspective) and none of it is right or wrong — it is based on what the patient values, resources they have access to, and it allows healthcare providers and other stakeholders to meet patients where they are — not where we think they are or where we want them to be.
Yes, can this be messy? Life is messy. Without the patient voice included in research, health IT, design, and health care discussion with providers in settings outside the exam room, we (everyone except for the patients) are going to be able to figure out how to come along side the patient and work with them on what they value at a given moment in time.
If clinicians feel that seeing patients all the time in their practices makes them experts on what patients want — then they are missing out on finding out what truly motivates and moves patients, what their goals and aspirations are. Patients are not just diseases or conditions or the medications that they take — they are human beings with goals, passions, and values that should take priority even when we as clinicians might not agree with the ordering or value placed.
If our patients are their own experts (or their caregivers) — and clinicians and other healthcare providers value continued learning — it just makes sense to include patients and their voices at healthcare/clinician conferences.
Carla Berg says
Speaking of ‘stealing’ (grin) this post now has a nice fat bookmark in my notes since it is a perfect list for any source who wishes to encourage stronger peer to peer bonds in a more formal conference setting. Thanks for the time it took to assemble!
Janice Tufte says
Wonderful article I had not heard MedX was taking a hiatus, so much good work done there. I think it is important that diversity of ePatients from challenged backgrounds and disciplines should be included in conferences. Diverse sociology economic lives, unusual lived experiences, unexpected educational histories. Thank you for your dedication and continued work.
Susannah Fox says
I love all the ideas people are sharing on Twitter. Here’s a quick list, just to document them (and I’d welcome people expanding on them):
– Don’t forget a quiet room(s) for nursing, praying or sensory breaks.
– Label food with carb counts for people who have type 1 diabetes and need to figure insulin doses.
– Ensure accessibility information about the event is available online far in advance
– Secure areas (taped out on the floor, for example) for folks who use wheelchairs – others may move signage to suit their own needs
– Ensure gender neutral bathrooms are accessible throughout the event, not just on certain days or at certain times
– Include pronouns on conference name badges. This can be done through online registration or via stickers at check-in.
– Ways to circumnavigate pronouns on badges when it doesn’t seem like there’s an option to add yours: enter [your name] and (pronoun/pronoun) as text in the full name portion of registration.
– Commit to #PatientsIncluded guidelines. Include patients and family caregivers at the beginning of (and throughout) the planning process. Patients and family caregivers often aren’t paid sufficiently to allow them to volunteer and/or cover costs up-front.
– Think of the environment! In everything you offer- forget water bottles, plastic dinner ware, non recyclable items, etc. , please it’s 2018!
Ben Keith says
A few more resources for conference planners to consider:
“Why you want a code of conduct, and how we made one” http://incisive.nu/2014/codes-of-conduct/ by Erin Kissane and the follow-up post “Talking and listening about conduct” http://incisive.nu/2014/talking-and-listening/ , both about how codes of conduct make conferences safer.
“How to accommodate a breast-pumping mom at your event” http://miriamposner.com/blog/how-to-accommodate-a-breastpumping-mom-at-your-event/ by Miriam Posner, with a detailed list of improvements that can be made to any conference.
“The parts of SRCCON that can be copied by other conferences” http://benlk.com/2017-09-19-what-other-conferences-could-learn-from-srccon by me, with 15 questions for conference planners.
Before doing decorations or artful stages, make sure that your speakers are paid for their time, that your conference attendees are safe, that your talks have live captioning, and that everyone is fed. Beyond leaving room for wheelchairs, make sure that someone in a wheelchair or on crutches or with a recalcitrant child can get from one end of the venue to another during the time between sessions. Pay for childcare.
Susannah Fox says
Thanks, Ben! These are very useful resources. This line from the first link resonates in particular: you create a code of conduct “…to make it clear to anyone who has been harmed or harassed, online or off, that your space is safe for them, and that you have taken their needs, and their existence, into consideration.”
Grace Cordovano says
Excellent ideas from start to finish Susannah! Thank you for composing and sharing. Adding:
-include more women as speakers
-include those early in their career to complement views of seasoned experts
-include carepartners in discussions on healthcare. They are the boots-on-the-ground when there isn’t a dr or nurse in insight. They have powerful insights and experiences to share that are too often left unheard.
Roni Zeiger says
MedX to me is about intersections:
– stories and science
– patients and ‘professionals’
– hugs and learning
Things that we pretend are separate, or that our medical culture teaches us are separate, but of course can’t be if we’re going to solve problems together and honor who each of us really is.
Susannah Fox says
Nonprofit AF is one of my favorite blogs thanks to posts like this one:
Tips from introverts for introverts on how to survive a conference
I would say I’m an extrovert who needs long stretches of alone time and yet who can resist tips like:
“Get there early, find an empty table so others can ask to sit with you vs the other way around. Who’s alone now?”
“If at all possible, take on a volunteer opportunity or two. I do so much better- and make authentic vs. superficial connections- when I’m being useful vs. being forced to make small talk.”
“I always do a google maps search of the area so I can skip a session if I need to and take a walk to a park or highly rated coffee shop! Gets you away from the conference hub bub and you can see some sights!”
And here are a few tips for conference organizers that resonate:
“I have a friend who hosts parties often and always has an ‘Introverts Lounge.’ This is where I can normally track down my husband. Better than hiding in a bathroom.” (Note: this sounds like a version of the Medx Wellness Room.)
“At our one day workshop, we try to balance session options with having one high energy choice and one ‘lecture or instruction’ type choice. We have an area that people can eat lunch outside if they don’t want to network.”
”Invite some artists to design interactive/hands-on sessions that involve everyone in an easy on-ramp to connecting with others.”
Susannah Fox says
In the spirit of “the conversation is never over” I am adding this excellent article by Kara DeFrias: To bore or not to bore: How theatre can save your conference panel
In addition to recommending that a moderator take on the responsibility of being producer, writer, stage manager, she notes that a good panel brings out actionable insights, not just bon mots.
Susannah Fox says
More advice from awesome people:
Lisa Suennen shares her advice for panel moderators (come with a point of view + stir up controversy are my two favorites)
Kym Meyer’s tweet captured how important it is for all speakers to use a microphone instead of shouting, “I’m loud enough, right?” Talking loudly emphasizes vowels, not consonants. And: “If a microphone is available, use it, regardless of room size. Be proactive with accessibility. There are ppl with hearing loss who will be silently frustrated they don’t understand, rather than speaking up and being identified as THE REASON the presenter is using the mic.”
Roxane Gay tweeted some great tips for conference organizers in her praise for a recent host: “I want to point out five things @LoyolaMaryland did that were really great. 1. When there was more demand than expected they moved the event to an appropriately larger venue. 2. Real time closed captioning on a large video screen 3. Actively inviting the Baltimore community 4. Stating on the event page that if you need accommodations inquire within and 5. Ample seating without arms for those of us who are ample.”
Susannah Fox says
Sara Holoubek shared a few excellent tips for conference speakers on LinkedIn this week. Here are the two that conference ORGANIZERS should pay attention to: use on-stage chairs that everyone can sit in modestly and comfortably; have a speaker ready room with a few essentials.
An excerpt from Sara’s post:
“Last week, right before I was about to take the stage, I studied the chairs. They were those tall director chairs that look like you need a ladder to climb up on, and just might topple over. Fortunately, all went well, but the experience brought back lots of #publicspeaking memories. So here goes:
1. Ask abt the chair set up (h/t @Alexandra Cavoulacos). Most seating is designed for tall men in suits, so skirts, dresses & heels can make for awkward experiences. I once spent an entire panel engaging my core body muscles just so I wouldn’t fall off a very high chair. Lounge-y chairs are also challenging.
4. Is there a green room? Sometimes you luck out – there’s a lounge w/ food, water, and hair/makeup. Sometimes not. Pro-tip: eat, hydrate, bring makeup + a lint brush.”
Susannah Fox says
Continuing the theme of “my blog is my outboard memory”: Here is Dana Lewis’s excellent post, Designing a meeting for non-traditional and traditional stakeholders