Tuesday, September 16, 2014

My Stanford #MedX Adventure: Worlds of Health and Worlds of Faith...Converging

For those keeping score at home, I ended summer and began autumn by attending the highly acclaimed Stanford Medicine X conference in Palo Alto.

I was there as a 2014 ePatient Delegate (read more about that here) plus as a panelist discussing "Communicating the Experience of Illness in the Digital Age" (read more about that here and see the panel on video here).

On the plane to California, I spent some travel time thinking about the psycho-spiritual dimensions of this adventure. Not for the first time did I feel called to ponder where I "live and move and have [my] being" (Acts 17:28). Worlds of health, wellness, and healthcare? Worlds of faith, spiritual life, and church? When and why do these worlds remain separate? When and how do they come together? 

I decided to devote some time during #MedX talking with physicians and other healthcare colleagues about how they manage the intersection of health and faith. Like nearly all my interests, this one is personal as well as professional, which makes me either an admirably whole person or a raving narcissist.

At some point I'll write more about when and how health and faith came together in my personal life. Short version: During my mid-30s, chronic illness was one of several realities that got (read: forced) me to think about big (and typically spiritual) questions like, "Why this?" "Why me?" "Why now?"

I wanted to have this conversation at #MedX because starting around 2010, I began receiving messages from physicians and healthcare policy wonks asking, "How do you get away with tweeting about your faith?" Interesting and, in some instances, heartwrenching conversations. Conversations about how health and faith and medicine and healing intersect (or can't) for them. All via the back channel.

Why the back channel? I guessed and then have had my suspicions affirmed that talking about faith is too risky, especially for those practicing medicine within corporate healthcare systems. Risky? I've understated that. Try dangerous.

In face-to-face discussions about this, more than one physician has physically recoiled when I've asked "Do you talk about faith with your patients." They blurt out, "No!" Then typically soften that visceral response by adding, "not unless they ask me." They expect those conversations to be handled by whomever is brought in for consultation, usually the hospice team.

More often than not I cannot follow-up with, "How does this affect you? What would your experience of practicing medicine be like if you could talk about spiritual issues?" The atmosphere has become just too charged with anxiety and we're just too busy process all that.

Except while sitting on comfy chairs in a hallway at #MedX.

Dr. Mike Sevilla (@drmikesevilla), who gave me permission to mention him by name said, "Religion has become too politicized. If I raise issues of faith, they hear 'religion' and then make negative associations and assumptions." (For the record, Mike did not recoil when I asked the question, he became contemplative.)

So, how might we change our language during medical encounters to reach the destination another way?
What if patients were asked, "Where do you seek and find comfort?" What if they were asked this long before receiving a devastating diagnosis and sent off for traumatizing treatment?
What if practitioners asked themselves, "How might I find meaning in the practice of medicine today?"
Questions about meaning and comfort are quintessentially spiritual questions. (No surprise that the Twitter handle for the HealthCare Chaplaincy Network is @meaningcomfort.) These are also questions that invite connecting with our common humanness.

Among many glorious things, this year's #MedX was notable for addressing the stigma of talking about depression and other mental health issues, especially for those with chronic illness (see below for resources).

Meanwhile, conversations about faith and health, for me anyway, took place in the hallways and the VIP room; during walks and meals off-campus. What if we brought those conversations to the mainstage?

Mike Sevilla's post about the depression and chronic illness panel on Dr. Mike Sevilla | Family Physician.

For videos of keynotes, panels, and Ignite talks visit the Stanford Medicine X channel on YouTube.

On Pinterest, take a look at Meredith Gould's Inspired Healing board.

Saturday, September 13, 2014

Stanford Medicine X: About that Spoon Assignment and the Artist-in-Residence

An artist-in-residence...at an academic medical conference focused on "emerging technology at the intersection of health and medicine."

That's right, the Stanford Medicine X conference (#MedX) spotlights a visual artist who not only delivers a mainstage talk and workshop, but also creates artwork onsite in real time. Conference attendees are invited to join in. How cool and brilliant is that?

Granted, there's no shortage of creativity among participants as well as presenters during #MedX. In fact, I found myself having several extensive conversations with healthcare colleagues about their choice of artistic expression. (If I receive permission, I'll name names in another post!) What's admirably unusual is #MedX's institutionalized recognition of storytelling with the visual arts.

Last year, #MedX featured patient rights arts advocate and founder of the Walking Gallery, Regina Holliday (@ReginaHolliday). This year, metalsmith and medical illustrator Rachel B. Stork Stoltz (@medicalartmofo) served as artist-in-residence. Rachel is especially interested in "giving visual voice to invisible illnesses." Enter, the spoon.

Christine Miserandino (@bydls), who lives with lupus, came up with The Spoon Theory while talking with her best friend about what it's like to make choices that healthy people take for granted. She uses spoons to represent a finite amount of energy. (Hot flash for physicists: energy is finite for people with autoimmune diseases.)

References to running out of spoons are immediately recognizable to many of us with chronic illness or disabilities. The "#spoonie" tag is used to identify and locate content and conversation about living with fibromyalgia, lupus, multiple sclerosis, rheumatoid arthritis, and other energy-suck conditions. I personally tend to use it when I have a concern that's most likely to be understood by another...spoonie. In my case, misery loves affirmation.

And so, I was pretty darn delighted when the #MedX sent me the Spoon Assignment (see this earlier post for what I brought and why). I figured Rachel would be using the spoons to create a masterwork, but the reality was even better. We were given access to glitter, beads, charms, ribbon, thread, paint, and glue. Fresh air on a balcony. Spoons. I retrieved the one I'd handed in.

One week ago, I recuperated from a very long day of conference hubbub by creating this reminder, which is now hanging next to my desk:

Regina Holliday's post about "The Walking Gallery" on Regina Holliday's Medical Advocacy Blog,
The Walking Gallery of Healthcare Community on Facebook.
Info about Rachel Stork Stoltz and Anatomical Element,
Meredith Gould's post, "Pinterest for Health is a Beautiful Thing...Literally" on the Mayo Social Media Health Network blog.
Meredith Gould's "Inspired Healing" board on Pinterest.
Christine Miseradino's website, www.butyoudontlooksick.com and on Facebook.

Sunday, August 24, 2014

Stanford Medicine X: Spoon Assignment

The assignment:
For a collaborative art project, bring a spoon and on a notecard answer two questions in complete sentences.

What I'm bringing:

Written on the notecard:
Grapefruit Spoon -- serrated edges = what I often feel like during a fibromyalgia flare-up!
1) Poking my nose into everyone else's beeswax uses up way too much of my energy.
2) When I have energy, I like to use it for "meditation in motion" -- cooking, gardening, decor projects.

Wednesday, August 20, 2014

Stanford Medicine X: Sorta Selfie Assignment

The assignment: 
One photo that shows you at work and expresses your passion for change and a brief sentence describing the photo.

What I sent in:

My passion? Communicating about change while hoping for transformation. 
The panda? Follow me on Twitter and it makes total sense.

Saturday, August 16, 2014

An Author's Life: I'm Declaring the Arrival of Autumn. Right Now.

Earlier this summer, my whimpering and whinging about not quite hunkering down to write my new book was met with sympathetic clucking from some and derisive-yet-loving laugh snorts by others.

Easy to distinguish between the cluckers and laugh-snorters. The laugh-snorters are those who have known me for many years; hardy souls who have observed my writing process throughout the course of writing -- or not writing and bitching about not writing -- previous books.

I thank God for these dearly beloved friends whose FFS response yanks me back to this reality: I have never never ever ever written book stuff during the summer months. Never. Ever. Never ever. These friends remind me that I've always spent the summer gardening (or did, when I had a garden), reading novels, binge watching mindless crap, avoiding sunlight, and praying for cloudy days.

You'd think I'd know this, but apparently it takes a mini-village to calm me the F down, to remind me how summer is my fallow season, that I come to life during the Fall when everything else starts dying. It's true. I perk right up when I see the green-gold of twilight happening earlier; when I hear cicadas chirr at a slower pace. Instead of searching for a cave to crawl into for the winter, I stumble out of the one I've created to escape summer.

There are several official ways to mark the beginning of Autumn. For most (in the USofA) it's Labor Day (September 1) and when the school year begins, even if school hasn't been attended for decades. Purists (of some sort) might insist on waiting for the Autumnal equinox on September 23.

But the air has been cool with crisp edges for many consecutive days. My Thai basil has gone to flower. The plane trees have been shedding bark for weeks. This morning I woke up feeling words forming sentences and paragraphs, which I welcomed as yet another sign that this ghastly season known as summer is finally coming to an end. Also, I suddenly have a hankering for meatloaf and baked potatoes.

So that's it, then. I'm declaring the arrival of Autumn and will stop bitching about not writing. Laugh snorts? Anyone?

Friday, August 15, 2014

Stanford Medicine X (Part Deux): Pondering Illness and Self-Disclosure in the Digital Age

[2nd in a mini-series of posts about attending the Stanford Medicine X conference this September.]

As if I weren't already deep into pondering illness and self-disclosure in the digital age for the upcoming panel at Stanford Medicine X, this morning I woke up to a Mashable article reporting that Robin Williams was in the early stages of Parkinson's Disease.

I zoomed in on these two paragraphs within the statement from Williams' wife, Susan Schneider:
"Robin's sobriety was intact and he was brave as he struggled with his own battles of depression, anxiety as well as early stages of Parkinson's Disease, which he was not yet ready to share publicly.
It is our hope in the wake of Robin's tragic passing, that others will find the strength to seek the care and support they need to treat whatever battles they are facing so they may feel less afraid."
I, for one, will be watching to see if and how the public conversation shifts from being about depression and alcoholism to being one about PD. And what if Robin Williams had gone public with this information? Annoying counterfactual or stimulus for thought? I hope it's the latter.

Thanks to digital technology, that care and support is now available 24/7 to anyone who is not only willing and able to access online communities of support, but willing to disclose what hurts and disturbs at all levels -- body, mind, and spirit.

At this point in the 21st century, people do seem more willing to use online social networking communities to disclose illness, chronic and/or terminal. Have online digital technologies in general, and online communities especially, changed the parameters of self-disclosure? I believe so. For the better? I say "yes" to that as well, although there can be unintended (but not unexpected) consequences of doing so.

This is exactly what Pam Ressler (@PamRessler), Susannah Fox (@SusannahFox), Colleen Young (@Colleen_Young) and I will address on Sunday, September 7, 2014 at 9AM during our panel, "Communicating the Experience of Illness in the Digital Age" at the Stanford Medicine X conference. And yes, we've created a special hashtag for it: #MedXsm

But wait, there's more! We decided to "flip" the panel, a technique grounded in the practice of "Flip Teaching" wherein students are invited to learn before getting into the classroom. It's a technique that generates more productive classroom engagement. It's also a technique gaining traction in the world of healthcare (see: Flip the Clinic, a Robert Wood Johnson Foundation initiative).

In practical terms, this means we're offering and inviting resources and conversation before heading out to Stanford. At the foot of this post you'll find links to blog posts from Pam, Susannah, and Colleen, plus one to the Storify that Susannah is curating.

Meanwhile, we want to know what you think about the new world of disclosure -- self or otherwise.

  • How has self-disclosure changed for you in the past five years?
  • What factors have led to those changes?
  • Are you more or less likely to engage with someone who openly discloses personal health information? If you're likely to engage, is it in public or via the back channel?
You're invited to carry on in the comments box. I'm hoping you do.

More Background
  • Pam Ressler's post about the panel: 2014 Medicine X: Communicating the Experience of Illness in the Digital Age, which addresses the abyss of understanding about what it means to live with chronic and/or terminal disease.
  • Susannah Fox's post about the historical context for sharing health and illness online: Communicating the experience of illness in the digital age
  • Colleen Young's post about self-disclosure and online community development: I want my sex life back! TMI? Or gold for online communities and their managers?
  • Storify with content and conversation about the upcoming panel, including highlights from the #hcsmca chat (August 6, 2014).
Attend MedX via livestream by registering for the 2014 Global Access Program.

Thursday, August 14, 2014

Stanford MedicineX is nigh upon me and maybe you too via the Global Access Program

[First in a mini-series of posts about attending the incomparable Stanford Medicine X conference this September.]

"You should apply for an ePatient scholarship to attend Stanford Medicine X." 

This was the fine, friendly and wise counsel I received many many months ago from someone* I've known for years, thanks to the world of healthcare social media. Uh, okay, I thought, although I choked a bit when I saw the application. It wasn't so much the length of it, but the invitation to disclose personal passions. 

I'm typically fine with doing that relative to healthcare industry issues. After all, I've worked in, for, and around the healthcare and pharmaceutical industries for decades; started writing about complementary medicine for consumer audiences during the late 1980s; have been a long time advocate of patient and caregiver access to useful, actionable medical information. I have no problem semi-humble bragging about working with (and now, for) the Mayo Clinic Center for Social Media (see this post about Bringing the Social Media Revolution to Health Care). But I have not -- by choice -- been super-public about my (dodgy) personal health and (bizarre) medical adventures. 

All that is about to change because I did indeed receive an ePatient scholarship and will be heading to Palo Alto in a few weeks. In addition to participating as a Medicine X ePatient Delegate,** I'm honored to be on a panel about "Communicating the experience of illness in the digital age." 

More about that panel in the next post. Headline: grateful for this opportunity to talk about how digital has forever changed our cultural understanding, if not expectations, about self-disclosure.

For now, note that you can and may attend #MedX virtually, thanks to a top-quality streaming webcast. The 2014 Global Access Program is free, but you must register for it in advance. Click this link to register for the 2014 Global Access Program.

For more about Medicine X, dedicated to exploring how "emerging technologies will advance the practice of medicine, improve health, and empower patients," click this link.

For a look at the conference schedule, click this link.

*Big reveal: Nick Dawson.
** Don't get to label myself a 2014 ePatient Scholar until I attend and complete all assignments.