Medicine X 2014: People.

I spent four days on the Stanford University campus in Palo Alto, CA for the Medicine X conference, and what, now I'm just supposed to go back to "real life"?

Emotions, energy, and spirits ran as high as my blood sugar. The #MedXHangover is real.

Every conference. Every time.

So much to say, so little time to blog.

What stands out to me most, in this moment of reflection:

• The swift manner in which handshakes gave way to hugs
• A purposeful and welcome focus this year on mental health
• The epitome of a "powerful patient story", this Ignite talk from epatient and fellow T1D Erin Gilmer - seriously some of the most gut-wrenching three minutes of the conference, and she wasn't even there in person which speaks to how much weight her words had/have
• How grateful I was to see Scott Strange in the hallway immediately after I left the stage to bolt to a safe place to "come down", and for the huge bear hug he gave me before I erupted in tears
• My ah-may-zing roommate Carly, who is a large part of the reason I had such a positive experience
• Finally meeting super-human Susannah Fox in person
• Seeing our diabetes community represented so well in sessions like Dana's (and Scott's) #DIYPS and Doug's Databetes project
• How truly valuable the ePatient Advisory Board was to the ePatient delegates/scholars, and how generous they were with their time, their hearts, and their energy (to the point that I'm concerned that they all need a week-long debrief/spa vacation/nap to recover properly)

The common denominator that made this year's MedX so great? People. Their stories. The way "diabetes patient" and "arthritis patient" and "crohn's patient" all just became "patients" in one community. The way patients and physicians and students alike voiced their concerns, thoughts, questions, and visions. I saw so much respect; so much curiosity; so much drive.

I'm still processing it all, but this Just Talking podcast does a great job of capturing some ePatients' thoughts on the conference in a more crowdsourced kind of way.

#MedX Global Access Program; Ignite Talk.

Chris was the reason I applied in 2012. I had never heard of Stanford's Medicine X conference before, nor had I known they were looking specifically for patients to attend their conference. "You should apply for this", he said - which baffled me. Me? Stanford? Medical conference? I wouldn't fit what they were looking for, surely. No, this was for someone else more official; more visible; more involved; more professional. Thank you, though.

The last possible date in the application period came and I realized that there was no harm in applying. I raced through the application. I was so certain that they would not pick me, but at least I could say I tried. No regrets.

But then, plot twist! I was selected for their ePatient program (and offered a scholarship that would cover the costs of my attendance, which was the only way I could attend, financially). My nerves on the flight there and throughout the first day were so intense that my whole body felt like one big vibrating lump because STANFORD and patients sitting in the front of the room and so many important people that I only knew through the internet and what am I doing here. I felt like an impostor. What am I doing here?

But then the conference began, and I increasingly began to understand.

image courtesy of Kerri

This conference that focused on "the intersection of medicine and emerging technologies" brought together every stakeholder in healthcare - but most especially, it brought together patients from a plethora of different conditions and communities. I felt so moved by the stories of my fellow patients; those ePatient Ignite talks were by far my favorite aspect of the conference.

And now, I get to return to Medicine X this fall (with limited scholarship help, this time) and deliver one of those talks myself. It may come to no surprise to you that the focus of my Ignite talk will center around the emotional impact of living with a chronic illness.

#MedX's Ignite! pt speakers: @chroniccurve @dudleyHUHS @JBBC @ProstheticMedic @Nisha_Pradhan @marvincalderon @JFreemanDaily @txtngmypancreas
— Stanford Medicine X (@StanfordMedX) July 7, 2014

You can check out the 2014 schedule here (and for those of you in the diabetes community, you'll be pleased to know that we are well represented on stage and in the ePatient program).

If you'd like to watch the conference but can't make the trip to Stanford's campus, you are in luck: you can virtually "attend" the conference by using the Global Access Program. It is free to use, but you have to register for it, so go do that.

Self-tracking and Diabetes.

There's this idea of a "quantified self" - that the better we can track, measure, analyze, and interpet our own personal health data, the better we'll understand ourselves. I heard a whole bunch about it at the first Medicine X conference; it seemed everyone was enamored with the potential of self-tracking tools: blood pressure, sleep patterns, heart rate, you name it. And for people living with diabetes? Whoa-ho! We're the original self-trackers; so open to wearing gadgets both on and underneath our skin, accustomed to the charts and graphs and incessant flow of data. Tiny computer directly on your eyeball? Of course they'd want that!

Except that I don't. The truth about self-tracking is that I hate having to do it, and I hate all of the "add-on"s that come with it.

I can mostly convince myself that all of the self-tracking I have to do is "fun", but I think it's largely because I'm at a point where I have to be okay with it for the sake of my sanity. It's a bit of Stockholm Syndrome, really: the longer I wear an insulin pump, the more I want to buy it accessories; introduce it to friends; to humanize it by naming it. I have to wear these devices that keep track of my blood glucose trends and insulin delivery, and the majority of the time the concept doesn't bother me because I have grown used to it. Having the choice between a zillion apps and devices is a luxury, really, but the act of using them is still work.

And I resent it.

Because while seeing my blood glucose trend up or down in nearly-real time is helpful, the constant flow of data can be an overwhelming experience. I watch as the amount of glucose in my blood waxes and wanes; the tide washing over my brain every five minutes as a new reading emerges. It impacts how I behave; what I eat; how I move; how I feel. It demands my blood. It scolds me. It doesn't apologize when the device, itself, is in the wrong.

The fact that I wear an insulin pump that can tell me all about my insulin delivery is great, but it also means that I am wearing a device that most of the time contains a lethal amount of a drug I'm trusted to administer to (and manage the doses of) myself. It gives me more to worry about - are their air bubbles in the reservoir or the tubing that I can't see? Has the infusion site clogged up, or the cannula bent? Am I sure I only put exactly the maximum amount of insulin in that new cartridge? Do I have enough battery life left to last me the day?

That I can test my own blood at home is a blessing, but I curse the fact that I am stabbing myself with a shard of metal several times a day in order to gain that information. It's a barbaric requirement.

And when it really comes down to it, I resent that self-tracking erodes the invisibility of my disease. An insulin pump and CGM provide me very valuable data, but they also mean that I am never simply me, physically. My tossing and turning at night must be done carefully; my clothing choices must account for how they'll allow me to access or disguise my robot parts; a journey through airport security will never be simple; even the use of a toilet requires intricate and meticulous maneuvers that preserve infusion sites and sensors. These devices are a physical and constant reminder that seem to cruelly whisper to the world, I am different. Something is broken here.

Wearing self-tracking devices means that not only am I working on managing diabetes, but also managing the psychosocial impact they have on who I am and how I feel about myself.

And that impact? Well... it's hard to quantify.

(Update: I participated in a live Google Hangout broadcast on this very topic, hosted by Stanford Med X - find it here.)

Medicine X: A Stretching Of The Mind.

The more time that goes by after Medicine X, the more unsure I become of what I want to say about it.

Nothing seems adequate to explain the transition from my full-scale freakout two days before traveling (there may have been a miscommunication about how many nights I was allowed to stay at the hotel, and it may have been the last thing in a long line of "things", and it may have resulted in me crying - not the dainty sort of tears, but an ugly cry that I locked myself in a restroom stall at work to deal with, and that completely freaked me out because I have never reacted to anything so dramatically and uncontrollably before, but now this tangent has gotten really long, so let's get back to task here) to the unreal feeling of being a guest on Stanford's campus and getting to be a part of this amazing and unique experience, to the growing feeling that I actually began to feel comfortable among the crowd, to the realization that there is so much more to know (about patient advocacy, about healthcare, and about how the two merge) than I can ever hope to grasp, but I'll be damned if I don't keep trying to do just exactly that.

It was exhilarating and exhausting and mind-stretching, and I feel so humbled and honored to have been able to be a part of it.

Some of the most moving moments of the conference, for me, happened during the "Ignite talks" - the young arthritis patient whose doctors dismissed her as a hypochondriac; the widow whose experiences with her husband's health care has driven her to be a voice for humanizing the patient experience; the man whose isolating personal experience with Crohn's disease drove him to build an online community for his fellow patients. (You'll find more and more of these talks uploaded to the Medicine X website as the videos are edited.)

But the magic was not just in what we heard and what we learned, but in what we could discuss. Medicine X brought together patients, researchers, designers, entrepreneurs, healthcare providers, students, and technologists. We had the opportunity to interact with each other face-to-face; to bounce ideas off of each other (I may have, in a wild moment of bravery, approached one of the guys behind the iBGStar meter and pitched him my idea for the kind of CGM-like sensor I'd like to see: one that can monitor more than just our interstitial glucose, but the factors that cause the fluctuations: blood pressure, heart rate, white blood cell count, exhaustion, hormones - and wouldn't you know, he actually seemed to take me seriously); to see, as patients, the human faces behind the often seemingly monolithic forces behind healthcare.

Speakers on Day 1 helped me become more familiar with terms like participatory medicine and self-tracking, and shared refreshing thoughts such as the belief that "the best way to design useful tools is to notice and respect what people are already juggling in their lives." (Quote from Susannah Fox.) Having not had much experience as a hospital patient myself, presenters such as Dr. Roni Zeiger and architect/designer Michael Graves opened my eyes to what is, and what can be.

...

...and this is where I stopped writing last night at 11:30pm, because I was so tired and really wanted to get to sleep. I figured I had said what I needed to say for the night, and I’d pick up where I left off later on. 

As the clock turned to 1:36am, I savored the last bits of a dream. Actually I didn’t realize it was a dream until a few seconds later, when I woke sharply out of it. I had been watching a very well-produced video that had moved me deeply, and then I had copied the link and pasted it into the blog post I was working on (which was this post). Except I didn’t actually do any of that, as I was startled awake by a low blood sugar. 

I lay motionless for around ten seconds, combing through what had just happened. I had hit ‘save’, right? Well, yes I had - but that was in the dream. The video didn’t actually exist, and the longer I laid there, the less I would be able to recall about why I thought it was so poignantly brilliant. I knew it ended with two people walking down a sidewalk, holding hands - I think my brain had made that to represent the patient and the healthcare provider joining each other on the road to "better".

(and this is the point where I spilled half of my juice on myself because I was still low as I wrote this) 

I pushed myself upright somehow; little strength available to me at that point. It was one of those completely disorienting lows that left me with little in the way of logic, balance, or rational thinking. The hallway bounced me around as I attempted to walk through it, or was that not real either? I ended up in the kitchen and drained my first juice box, while simultaneously pawing around for a notebook; a scrap of paper; anything. I desperately needed to get down in words the epiphany I had just had in my dream. 

Here’s what I got out: 



Yeah, I don't really know either, now that I look at it with properly glucosed eyes.
Hat tip to the juice box straw wrapper, though.



I'm keeping this really long intermission in this post because I want to help you (and when I say "you", I'm referring to anyone who may read this that designs, researches, studies, or otherwise is involved in healthcare) remember how a chronic condition like type 1 diabetes can impact every single bit of a patient's life. It disrupts our sleep; it can weaken us during the very moments in which we wish to be strong; it never leaves the equation of our daily lives. Many of us may flourish, but it is nearly never with ease. But even so, we are strong - partly because we are compelled to be, and partly because we have to be to survive. Our narratives can move and change and inspire, and that is why we must share them. We cannot expect designers to be able to develop these "useful tools" for us if we don't share with them why and how they need to fit into our lives.

So what have I taken away from Medicine X? I think that answer will continue to evolve over the next few months. Seeing and hearing from patients in other pockets of chronic illness (meaning, outside of diabetes) helps me both appreciate and empathize how far healthcare has come, but also where it needs to go.

The best part of that last conclusion is that we, the patient advocates, are gaining an increasingly influential role in how that future is shaped. We have an obligation and a right to speak up. We must.

Check out the Stanford Medicine X Flickr account for images from the conference, as well as the Medicine X website for videos and other details.

Medicine X.

Tomorrow I'll be heading to Palo Alto, CA to attend a conference at Stanford University called Medicine X (#MedX for short). In the words of conference organizers, Med X is "a catalyst for new ideas about the future of medicine and health care. The Medicine X initiative is designed to explore the potential of social media and information technology to advance the practice of medicine, improve health, and empower patients to be active participants in their own care. The “X” is meant to evoke a move beyond numbers and trends—it represents the infinite possibilities for current and future information technologies to improve health."

A conference that merges health, technology, and social media (and focuses on the patient)? Heck yes.

What's especially cool about this particular event (aside from "holy crap it's Stanford" and "the guy who designed half of the stuff I use in my kitchen and closets will be giving a keynote" and the obscene number of coffee breaks built into each day) lies in the thoughtful persistence that resulted in around 35 ePatients, myself included, being able to attend through some scholarship help. From what I understand, the historical problem with health conferences is that while they may talk about patients' needs and concerns, they don't typically make efforts to include and engage with them. (This year's ADA Scientific Sessions, for example.) Other DOC faces you might recognize include Dana, Cherise, Chris, Jewels, Lizmari, Amy, and Mike. What a great group!

If you are interested in tuning into the conference via webcast, Stanford recently announced that they'll be offering a high-quality live stream of the event. (Rock!) Find it here, and access the webcast by creating an account and registering for the "2012 Global Access Program". You may also follow the conference conversation via the hashtag #MedX, and you know we'll be tweeting and posting to Facebook as we go, too.

See you next week!

The World Needs More Dancing And Puppies.

As I climb my way out of the Stuff I Need To Catch Up On After Traveling Vortex, I've taken a bit of a writing breather here. I'll be back at it next week, but until then... semi-narcissistic bullet points.

• You'll find a guest post from me about diabetes and social media over here.
• I was able to record a couple of You Can Do This videos while at the Roche Social Media Summit this week, and when you combine those with the videos still left to share from FFL, my head explodes a little bit. Don't worry; I'll clean it up. (But seriously - the videos are awesome, and I'm excited to get them ready to share.)
• Speaking of the Summit, I want to share a couple of things (at least) from what I experienced there - it was my first time attending, and I was grateful to be among so many good people doing good things. More on that next week.
• My Verio meter seems to have gone missing. At what point do I put its picture on a milk carton? I can pay you in test strips... that I can't use, if I can't find the meter... 
• Have you ever met a sport team mascot that could booty dance? I have.

• I actually can't remember if I've mentioned this here yet, so forgive me if I'm repeating myself...
  a couple of months back, my friend Chris made me aware of a scholarship program for a conference I'd never heard of: Medicine X. It's an academic conference taking place this September, created and run by Stanford University (I KNOW RIGHT) and designed to address "the intersection of medicine and emerging technologies". I ended up being selected as one of the 35 e-patients who will be receiving scholarships to attend - which is way, way cool of them to work so hard to get the patient voice represented. This week, an e-book was released, introducing the e-patients that will be at the conference. (My section is essentially a rephrasing of my scholarship application.) I'm honored to be listed amongst such great company!
• And lastly, the world finally has a 24-hour Corgi Cam. Happy Friday.