ePatients

After #MedX: The Big and The Little

A few weeks before attending Stanford Medicine X (#MedX) 2015, I wrote down my thoughts about life in the “Before #MedX” stage.  I knew that this experience would be life-changing, inspiring, and empowering, but if I multiplied those factors by a billion, I still would have underestimated just how powerful the #MedX experience was for those of us who were so blessed to be there.

We talk and tweet a lot about the big moments at #MedX: when Cyrena Gawuga brought the crowd to our feet during her Ignite! talk, which chronicled her personal growth in the face of what previously seemed like a failure; when Abby Norman carried us through the whole spectrum of feelings- from hysterical laughter at her wit and humor to blinking back tears in awe of her journey to get properly-diagnosed with endometriosis and appendicitis; when Julie Flygare illustrated that anything is possible despite narcolepsy; when we marveled at the strength and determination of Emily Kramer-Golinkoff, who is improving the lives of those with cystic fibrosis as they race against time (side note: I was totally “fangirling!”); or when Ben Bahan taught us that he can communicate and listen (and do so with a sense of humor that rivals Amy Schumer’s!) despite being deaf.

MedX stage

All of those moments were just- Wow.  My fingers couldn’t tweet the powerful one-liners fast enough.  Every sentence spoken was just that darn spellbinding.

As much as #MedX completely renews your sense of purpose and advocacy with the big headliner stories, it also reinforces those concepts in the little, behind-the-scenes moments.

I received support from #MedX before I even stepped foot on the Stanford campus.  When a good friend’s child was diagnosed with a serious condition recently, I sought advice on what to say and what not to say (from a 2015 ePatient who I will not name here to respect my friend’s privacy; ePatient, you know who you are- thank you).  The #MedX advisory board and administrative staff made sure that all of the i’s were dotted and the t’s were crossed to ensure a pleasant experience for conference attendees.  #MedX alums were always available to yield my rookie questions at all hours of the night.  At the ePatient dinner, our hearts overflowed with compassion and respect for one another.  The list of human goodwill goes on and on when it comes to Medicine X.

From a diabetic online community (#doc) standpoint, I enjoyed talking about the highs and the lows with Chris Snider, Amy Tenderich of Diabetes Mine, Sophie Thacher, Meredith Hurston, and Dana Lewis- who carried her (artificial) pancreas in her purse, which automatically ranks her pretty darn high in my book of praise!  It was refreshing for me to be around people who understood without me having to really say anything, who could swap campfire tales of funny diabetes moments, and who were so passionate about our #doc advocacy endeavors.

The #MedX workshops were particularly informative and interactive.  Dr. Bonnie Feldman enthralled us with her autoimmune disease research, and we pledged to keep in touch and work hard to crack the autoimmune code as a community.  My good friend and fellow ePatient, Danielle Edges, held a workshop on eHealth in pediatrics, which featured her family’s brave story of caring for a daughter with a congenital heart defect called heterotaxy and another daughter who is secondarily impacted by having a sibling with a chronic condition.  It was so uplifting to witness this Mom, who would go to the ends of the earth to help her family, whose humor remained intact in the face of challenging circumstances, and whose loyalty and friendship is beyond measure.

#MedX is renowned for bringing together the various participants in the realm of healthcare.  We hear the term “Big Pharma” thrown around quite often online.  But I can assure you that the pharmaceutical representation at #MedX was laser-focused on getting the little details right and connecting with the patients whom they serve.  I was asked, “What can we do for you?  What message do you want us to hear from your patient perspective?”  I was so humbled by their willingness to listen and their desire to drive innovation.

There were also the little moments at the Sheraton pool, where ePatients and other #MedX attendees dined after the day of conference events concluded.  Nisha Pradhan’s passions for advancing anosmia research and providing an empathetic medical experience were contagious.  Britta Bloomquist taught me about life in northern Minnesota and juggling Lyme disease and ankylosing spondylitis.  Kristin Coppens was an example of grace and determination while managing multiple chronic conditions.

Natalie Abbott and her service dog, Cassius, educated us on Moebius syndrome, a rare disease only diagnosed in 1,000 patients thus far.  Natalie and Cassius were the epitome of a good team; they worked together seamlessly, never complaining.  I gained perspective that I must admit I very much needed by watching Natalie and Cassius together: Moebius syndrome is a passenger along for the ride in Natalie’s very-accomplished life, not the other way around.  We can apply that same lesson to every sort of adversity in life.  Thank you for inspiring me so much, Natalie and Cassius!

There are so many other big and little moments from #MedX which I would love to highlight, but the truth is that I could write a novella about how great each individual who attended is.  I would like those reading this blog to know that #MedX is a phenomenal experience because of the positive, enthusiastic, dare-to-dream-big nature of its attendees.  We are without a doubt going to change healthcare for the better.  Heck, we already have, and we’re just getting started.

The best way to summarize what #MedX means to me is to leave you with a story.  (We really like stories at #MedX!):

I woke up having some concerning diabetes issues on the first day of my #MedX experience, the pre-conference Healthcare Innovation Summit event.  To be honest, I felt quite ill.  My mother convinced me to take the shuttle to the conference location.  There would be plenty of healthcare geniuses around if I needed assistance, she advised.  How very, very true.

As the day went on and I took many insulin injections, my diabetes situation began to improve.  The group disbanded for an afternoon coffee break, and I walked to a bench in the shade of the Stanford campus.  Eventually, a professionally-clad woman sat down on the neighboring bench.

“This shade is so welcome,” she noted.

“Absolutely, and it’s nice and quiet here- a good opportunity to take a breather,” I replied.

And so we chatted.  She was at #MedX representing her healthcare company’s new technological product.  Her excitement for the tech’s potential to improve lives was palpable, and it was clear she loved her work.

“Can you explain to me what an ePatient is?” she asked.

“We’re all here to advocate for our respective causes.  We believe wholeheartedly in improving healthcare, in humanizing the story.”

“Is diabetes… hard?  As in, does it impact you a lot?” she asked tentatively.

“Sometimes…,” I admitted.  “We fight hard for our health every day.  But we believe in a brighter future.  Isn’t that why we’re all here to begin with?”

And with that we walked back towards the conference hall, two people on different sides of the healthcare equation, united by a common ambition to help others.

That’s what #MedX is all about.  It was my greatest honor to attend this year, and I would like to sincerely thank everyone at Medicine X for sharing their perspectives.  Keep doing big (and meaningful little) things.

Disclosure: I attended #MedX on a partial scholarship as an ePatient delegate.  Opinions expressed here are strictly my own.

     Zoe Chu                         MedX sign

^ With the world-famous #MedX mascot, Zoe Chu!                ^ Excited for #MedX!

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“Uh-huh.”

When I adopt my future child (see here), the phrase “uh-huh” will probably be worthy of a “Swear Jar” donation according to Ally’s Little Book of Rules.  (All proceeds will go directly to diabetes research- let’s chill out, please!)

“Uh-huh” offends me not because of what it says, but because of what it does not say.  It is an empty phrase which does not even pretend to hide its indifference.

I will be the first to admit that I tend to get overly excited about nerdy diabetes-related things.  I follow diabetes stocks and press releases on my cell phone, enthusiastically peruse the blogosphere, keep up with DiaTribe and DiabetesMine articles, and look for every opportunity to discuss the information I devour.  I have pledged to my doctors on many occasions that I will take a break from healthcare information overload, but it proves to be a difficult task when fighting for your health every day.  Diabetes and healthcare are interests which are inextricably intertwined with my very existence.  They are not the totality of who I am as a person, but they are passions of mine with very stubborn “off” switches.

However, diabetes and healthcare are not everyone else’s passions.  So when I am rambling on and on at happy hour about the latest blood glucose meter technology or that one time I ate the entire carton of ice cream during a nighttime hypoglycemic episode, I need to take a step back and realize that others may not be quite as into this stuff as I am.  Fair enough.  If I could be cured of diabetes tomorrow, I would jump at the chance.  Although I suspect that my interests in diabetes and healthcare may not subside once I am cured, I would not mind finding a new, less serious interest to take up some of my time.  Badminton, anyone?

“Uh-huh” is suitable if I am boring you at the bar with a story that you do not really care about.  “Uh-huh” is not acceptable if I am talking about something deeply emotional that affects my health.  Dexcom software upgrades are one thing, but my personal health triumphs and tribulations are quite another.  If I am describing a diabetes incident that spooked me or a frustrating few days of persistently high blood sugars, I am opening up to you because I want you to hear me.  I trust you.  I want you to value what I am saying as important, to empathize, to not pretend that you know the answers but to simply be there for me nonetheless. 

When you say “uh-huh” on the other end of the phone and change the channel on the television running in the background, what I hear is not “uh-huh.”  Instead, the message conveyed is, “I am sick of this same old story.  Diabetes sucks.  I get it.”  You know what?  It does suck.  And it may continue to suck.  It’s diabetes, and it’s a selfish jerkface.  Sure, I have experienced a rough year of diabetes transitions (insulin pumping to MDI to every emotion felt along the way), but I do not get to “uh-huh” away this disease.  I sure as heck hope that it is not especially difficult every day until there is a cure, but sometimes there are long stretches of time where diabetes is a royal pain in the a$$, whether or not we are talking about Lantus burn at backside injection sites.

We are all human, though, and I caught myself “uh-huh-ing” a friend last week.  My coworkers and I are working from home a majority of the time now, a nice perk for those of us who require multiple cups of coffee before we are properly-functioning each morning.  The downside to working at home is that we do not have one another within walking distance if we need help.  Recently, my friend (let’s call him Jason) called my cell to seek advice on a difficult case.  My blood sugar was a bit rocky in that moment, and I felt the familiar brain fog that accompanies those overtired, rollercoaster health days.

“I’m thinking if we use this regulation, I should be denying this issue,” he said.

“Yeah, but I just emailed you the updated guidance.  We can grant benefits only if that particular symptom is present, which it is here,” I replied, as we went back and forth with medical evidence and legal stipulations to try to make the right decision.

The more we interpreted the guidance on the case, the more I found myself nodding and saying, “right, right, uh-huh” as I clicked through online documents, only half-paying attention to what Jason was trying to tell me at this point.

Frankly, I had made up my mind about what we should do on the case five minutes earlier, and I wanted him to be on the same page.  Eventually, our viewpoints fell somewhere in the middle and we were able to move forward.

The moral of the story is that everybody “uh-huhs” now and then.  At times, I am guilty of what I am critiquing here, too.  So what are we going to do to fix this?

Society often incorrectly relates empathy to having actual experience in the particular situation occurring.  For example, a cancer patient can empathize with another cancer patient, but a person untouched by illness cannot offer any valuable input.  I do not personally believe this.  First off, every person’s cancer or diabetes or death of a parent or any other difficult cross to bear has its own nuances.  We are all different people from different backgrounds with different struggles.  But the common denominator is that we are all human beings.  Because of this, we all know how to empathize.  It does not mean that we have to experience carbon copies of one another’s pain.  Rather, we simply have to offer up messages of support.

Instead of saying “uh-huh” when I describe an aggravating diabetes day, say something like, “I’m sorry.  That sounds so tiring.  Let me know if you need to chat later.”  Please listen.  If I wanted to talk to an empty space, I’d jump rope to the beat of a diabetes jingle or throw a tennis ball against the wall while collecting my thoughts.  But instead, I have chosen to tell you, someone who is so important to me and my diabetes fight.

Acknowledge my pain, but do not feel like you have to magically erase it for me.  Do unto others as you would have them do unto you.  Nowhere in that verse do I hear the phrase “uh-huh.”

I pledge to support you in the same ways that I want to be supported- devoid of “uh-huhs” but generous in understanding.  If I do not know what to say, I will attempt to think twice before muttering an empty rationalization.  “At least it’s not XYZ” belittles the struggle.  Instead, I’ll speak the truth next time: “ABC is very difficult.  Please know that I’m here for you.”  We cannot suddenly cure illness overnight, but we can make a more concerted effort to see each other through tough times.

From now on, let’s walk together, instead of “uh-huh-ing” each other.  Promise? 

Before #MedX

Last year’s Stanford Medicine X (#MedX) took place during the same weekend that I created my diabetes blog, Very Light, No Sugar. I was new to the internet blogosphere in September of 2014, and I spent much of my time that weekend soaking it all in.

This exists?! THIS! These concepts that have been bouncing around in my head for so long have a place and a name and a community?! Perhaps I can be part of it? Everyone seems friendly and cool! YES!!!

These were my initial thoughts as I perused the blogs of the diabetic online community (#doc) and followed the #MedX hashtag as ePatient delegates and other MedX attendees tweeted live from the conference. I later watched videos of the MedX 2014 speeches, read blogs of MedX alums, and visited and re-visited and re-visited some more the 2015 ePatient application portion of the Stanford Medicine X website.

I made the rookie mistake of writing 1,000-word answers to the MedX application instead of providing 1,000-character responses as instructed. Upon discovering this issue, I stripped my answers down to the core of why I felt so passionately about this conference and improving healthcare, and I finally clicked “submit” late one evening. Fast forward to now- about five weeks away from MedX 2015- and I could not be more excited to be an ePatient delegate this year and to share the information absorbed at the conference with all of you.

MedX is so special because it takes the “What if’s?” and does not shy away from them in fear.  Rather, MedX imagines and creates the possibilities.  MedX connects the respective patient, provider, and technology dots of the healthcare equation by putting them all together at the same conference.  They are allowed to work together, to dare to dream big, to share the positives and the negatives of their personal healthcare experiences, and to learn from one another in the process.  Recognizing that healthcare is an ongoing evolution, MedX keeps the conversation going before, during, and after the conference.

Many MedX alums have noted how much their lives were positively-influenced by attending MedX. With the conference just around the corner, I find myself keenly aware that this is the “before” stage for me. I study healthcare, work in it, live it through my experience as a type one diabetic, and have moments of inspiration and frustration along the way. After attending MedX from September 25 through September 27, 2015, I will gain a viewpoint that covers a vast array of healthcare experiences- those of other patients, those of providers, and those of technological gurus and innovators in the healthcare field. This will be the “after” stage. I already know that this opportunity is a blessing beyond what I can imagine right now, and I am so very thankful to get to attend MedX 2015.

I am most excited about learning from different perspectives while at MedX. Although I know a lot about diabetes because I live with it, I recognize that healthcare goes far beyond insulin injections and endocrinology. At MedX, there will be industry leaders discussing breakthroughs in technology, ePatients who have battled brain tumors or acted as caregivers for their loved ones, and providers who put their patients’ best interests first and foremost. Taken together, all of these contexts are a valuable asset to improving healthcare as a whole.

The fellow 2015 ePatient delegates to MedX are a great crew of people, as are the Stanford Medicine X administrative team and advisory board. MedX participants come from diverse backgrounds, encounter different health obstacles, and have unique experiences from which to draw from. Yet we share an unspoken comradery before even having stepped foot on the Stanford campus. We have put ourselves out there online because we believe wholeheartedly in improving healthcare. We advocate for better access to care, more open dialogues amongst all members of the healthcare equation, promising futures for those who endure our respective disease processes, and more. We know the feelings of joy on the good days and pain on the bad days, and we maintain hope that the best is yet to come in the future. MedX provides the perfect environment in which to work hard towards these goals and to be a part of the conversation about improving healthcare.

For more information on Stanford MedX, please visit medicinex.stanford.edu.

 

Disclaimer: I have received a partial scholarship to attend MedX as a 2015 ePatient delegate. Opinions expressed here are strictly my own.

Speak Your Mind

I’m doing some research for one of my grad classes with a focus on how the Affordable Care Act impacts quality of care.  While there are objective measures of quality such as hospital reimbursement rates, I believe the patient perspective is invaluable as well.  Quality, then, must be addressed and defined from the various view points of those in the health care system.

I would like to gather some patient responses prior to my presentation.  Personally identifiable information will not be included, rather, the aggregate of the information provided to me will be summarized for my class.

So, if you have an opinion on how quality affects your health care, please comment here or feel free to contact me over the next few weeks.

What would you like to see change in terms of quality of care?

Do you think that the way your health care providers measure quality is an adequate representation of the type of care you receive?

Have you noticed changes- good or bad- in your quality of care since the passage of the Affordable Care Act?

Is your health care delivery environment upfront about how they plan to improve the quality of your care?

These are just starting points, but any and all information provided will be useful and is greatly appreciated.

Thanks for your help!