Tuesday, November 18, 2014

Hurt Society Blog Carnival Call: ePatient Travel Edition

Fellow advocate HurtBlogger and I have been traveling a lot lately — cross country flights, multiple hotel room nights, long drives, public transportation, business and pleasure. All the travel takes its toll. We aren't always as rested as we should be, perhaps have always eaten the best, have logged too many steps, or carried too many things. But our advocacy work is important enough that we are willing to make certain sacrifices in order to represent.

This week she and I have met in San Francisco for a rare day of rest and relaxation prior to a Medicine X planning session. Although she lives in Southern California and I in Western North Carolina, our meeting comes on the heels of trip to Boston and Philly — her for the American College of Rheumatology and me for the American Society of Nephrology. Catching up this morning over breakfast, we discussed our travels. We didn't focus on sights we'd seen or foods we'd eaten. Frankly those kinds of things are rather low on the list compared to networking and learning.

Instead we lamented the physical demands of traveling and dealing with an industry — though often called "hospitality" — that is less than patient-friendly. I've heard more stories in the past two years about patients with invisible disabilities being disbelieved and harassed while seeking needed accommodations such as extra time to board a flight, a room with a refrigerator for medication and nutrition or assistance carrying luggage. Many such things can be had by paying more money, but as patients know — problems most easily solved by throwing money at them are the ones that present some of our greatest challenges.

How might we better address these challenges? As individual advocates, we and many others have voiced our concerns and pointed out problems — but that doesn't mean that we've been successful in making it easier for others. So we're launching an offensive. In preparation for the holidays' busy travel period, HurtBlogger and I are joining forces to bring you the Hurt Society Blog Carnival ePatient Travel Edition that will pull together posts highlighting what it's like to travel as a patient.

We want to hear from you. This isn't just about venting — it's about calling out bad policies and proposing solutions; it's about recognizing those who are getting it right and holding them up as shining examples; it's about sharing tips to help others survive whether that's enrolling in TSA's Pre-Check program or finding hotels with free breakfasts.

Submit your post to us for review and possible inclusion by noon (Pacific) on Saturday, Nov. 21. Be sure to format your submission with the following:

Post Title:
Blog Title:
Twitter Handle:
1-3 Sentence Post Summary: 

Note: perhaps you are not interested in writing a post of your own but know of one that has provided you with valuable tips. Send it to us!

Look for the Hurt Society Blog Carnival ePatient Travel Edition to post on Sunday, Nov. 22. 

Friday, September 19, 2014

And In The Wilderness A Clearing Emerged

In addition to my work as an advocate, my actual "job" has been as a reporter and editor. I've been in the field professionally since I was 17 (though one could count running the school yearbook and starting a literary magazine as my initial forays). My first employment outside a horse stable was in an university's public relations office. I worked four summers there moving up from the mail room and putting together basic press releases to writing full articles and contracting for assignment work while at college. I earned a degree in journalism with an outside concentration in political science at UNC-Chapel Hill. While there I worked as a writer, desk editor and managing editor of The Daily Tar Heel; wrote for and edited a literary magazine; volunteered for Journalists United to Maximize Potential, a student-run organization that taught middle school students how to produce a newspaper; interned in public relations for the Morehead Planetarium; and interned in public relations and artist promotions for a record label.

After college I went to work for a twice-weekly paper in South Carolina, which was a formative experience that I was happy to leave nine months later. I got two cats out of it and a love for police scanners. I took a job as a reporter near home in the mountains of North Carolina on Sept. 23, 2003. I rose from reporter to special sections editor for all our contract publications. When our company acquired a nationally-distributed slick-glossy magazine, I became assistant editor and then managing editor in 2010. (And yes there was time spent teaching and being a licensing test proctor in there too...) Since then I've reshaped the magazine, grown its content and overall vision, and — as the years went by and my advocacy work took off, I even had opportunities to involve some of my health contacts in writing pieces for it.

However, my passions changed the more involved I became in advocacy. I saw a greater ability to make a more immediate impact by connecting with patients, providers and industry leaders. Advocacy work made all my personal illness make sense. Illness was a strange gift of burden that gave me unique knowledge and experiences. To communicate about illness was a challenge with deep personal impacts. I was afforded opportunities to grow in this regard and turn my knowledge and experiences into solutions for the healthcare community at large. And I suppose one could say that I fell in love with doing, with getting elbow deep instead of being an objective observer.

Thus I found myself in the position of being all in — with the caveat that I was not yet all out of my job as an editor. For much of 2014, I juggled as many serving plates as for a dinner party of 108. We began planning to revamp the magazine to feature more web content, ad sales experienced an uptick, writers came and went (sometimes not by their choice), and the culture of innovation I loved so much in my advocacy work influenced me to keep editorial offerings fresh. By summer, I was named Coordinator of ePatient Programs for Stanford's Medicine X and learned just how little sleep I really needed as the conference crept closer and collided with press deadlines. I've always worked well under pressure, but this time the pressure also had a way of crystalizing my priorities.

I was supposed to spend the week after MedX connecting with nature. Instead I was gnashing my teeth. Out in the wilds of Yosemite, I only occasionally received a cell signal, which was sufficient for texting at best. Online access could be had only late at night or early in the morning. In the dark hours with my phone held just so, spotty 3G connected me to all those also suffering the #MedXHangover, their blog posts, their continuing conversations. And I felt so very left out and alone.

Then an email arrived from my publisher. We needed to talk about deadlines. Or at least he needed to talk about deadlines. I did not. I needed to deconstruct, discuss and disseminate every detail of my thoughts about patient engagement, clinical trials, online communities, mental health, self disclosure, relationship building, innovation, collaboration — everything that fostered in me the inspiration to continue advocating for change. And thus the decision was made. I replied to my publisher that I no longer was the right person for the job.

We traded emails for two days, and I did not tell my husband — who works for the same company — about any of it. The last night of our trip, we were well into working our way through a water-front bar's microbrew list when he demanded answers.

Him: "Is my kitty okay?"
Me: "What?" 
Him: "Is my kitty okay?"
Me: "Your kidney?"
Him: "Is Nelson alive?"
Me: "WHAT?"
Him: "Is my cat Nelson still alive?"
Me: "Um... yes? What? Why do you think Nelson is not alive?"
Him: "You've been kind of dodgy for a couple of days. Is Nelson dead and you haven't told me?"
Me: (brow furrowed) "What kind of person do you think I am? Geez. YES. Your kitty is FINE. I've just been thinking about making a major career change."
Him: "Oh. Okay."

That night he was happy and supportive. In the morning, when he had sobered up, he was terrified. 

Me: "I knew I shouldn't have told you until I had a plan!"
Him: (consternated) "What IS your plan?"
Me: "Give me a few days."
Him: (incoherent grumbling)

It took another week for things to truly begin to come together. I lined up enough contract work to cover the basics. A side project offered the promise of a business plan. A start-up company scheduled a meeting. And my publisher and I went out to lunch. Four days before my 11-year anniversary with the company, I negotiated my exit strategy. 

I will remain at the magazine's helm for one more edition, assist in hiring a replacement, train said replacement during 2015's first edition and then transition to a contributing editor role. The arrangement frees me to do what I do best and enjoy most — writing, contributing to the creative vision, editing and developing web and social media content — while eliminating managerial duties, thus giving me more time and flexibility to be an advocate and independent consultant. Already I am committed to speaking in Philadelphia and Australia and consulting locally, in Philly, California and Washington, D.C. by April. I also will pursue opportunities for a writer's residency with the intent of working on that book so many have been prodding me to do. 

This pivot, this new plan for the future would not be feasible without years of encouragement and support from friends, family and mentors — though really those categories greatly overlap one another. I thank all of those who have been part of my journey thus far, and I do sincerely hope that they will continue along with me as I hack a new path. Yet I caution — the only following each person must do is to follow the course his or her heart knows to be true. 

Wednesday, September 17, 2014

Call for ePatient Applications - Medicine X 2015

Each September since 2012, healthcare's thought leaders and innovators have come together at Stanford University for an unique conference event that gives true meaning to the phrase patients included. Medicine X is an academic medical conference for everyone.

Participants from throughout the industry—clinicians, nurses, researchers, device developers, technology creators, pharmaceutical representatives, designers and others—join activated, empowered and engaged patients. Known as ePatients, these patients are at the forefront of changing healthcare to become more patient­ centered.

Stanford Medicine X is the premiere international convening of thought leaders around healthcare innovation, education, design and patient empowerment. Medicine X has begun accepting applications for full and partial scholarships for patients to attend and speak at the 2015 event.

Full and partial scholarships are awarded to as many as 35 patients to enable their conference participation. Scholarships cover or greatly discount conference registration fees, provide all patients with breakfast, lunch and snacks on each conference day, and provide the opportunity for ePatients to become integral voices in conference proceedings. 

Upon acceptance to the Medicine X ePatient Scholarship Program, those selected become Medicine X Delegates. After participating in select events leading up to the 2015 event, attending the conference on the Stanford University campus, and successfully creating deliverables that utilize social media to reflect on their conference experience, attendees become Stanford Medicine X ePatient Scholars. 

To learn more about the 2015 Medicine X ePatient Scholarship Program and apply, click here. Applications are due no later than Nov. 1, 2014. (And yes — if you are interested in and passionate about patients' roles in medicine, YOU should apply. We aren't just looking for people who have helped enact legislation or founded their own nonprofit or invented a life-saving device. Those things are great, but most of all we seek candidates who have a desire to make a difference and can learn from what the program and fellow ePatients have to offer.)

Listen in to what some of 2014's ePatients and attendees had to say about MedX via fellow Medicine X advisor Chris Snider's podcast Just Talking. (And really... this stuff is worth listening to no matter what.)

Post-X Episode 1

Sunday, August 24, 2014

Help Shape the Mental Health Conversation at Medicine X

Mental health too seldom is discussed. There remains a stigma associated with with conditions that impact the brain. Why? The brain has no better protection from illness than the heart or the lungs or the skin, yet we hold it to an entirely different standard. This antiquated philosophy must change—and only will change when we bring conversations about mental health to the forefront.

I am an advisor to Medicine X, a healthcare and emerging technology conference held at Stanford University each September. During and after Medicine X 2013, attendees and those engaging in the conference via the livestream and Twitter feed called for greater inclusion of mental health issues—and we listened. At Medicine X 2014, mental health and psychology weave their way in and out of various presentations. Daniel Siegel, MD will give a keynote speech and lead a 90-minute Master Class on "Compassion, Connection and Engagement: How Health Arises from our Mind, Body, and Relationships." Dustin DiTommaso of MadPow will take a look at the psychology of motivation and how to close the gap between people's intentions and their actions. Allison Darcy presents her work to develop and pilot a smartphone app for patients with eating disorders. Four CEO's will talk about building companies to bring emerging technology to mental health; and psychologist Dr. Ann Becker-Schutte leads a panel discussion about mental health as a turning point for whole person health.

It would be remiss of me to talk about bringing mental health into the light without being open about my own. As a freshman in college, I was diagnosed with depression and anxiety. Changes in environment and my support network brought the diagnosis about—I am an only child, and frankly, I always got along better with adults than I did my peers. I went to a relatively large university where 200 to 300 students filled giant lecture halls for introductory classes. My professors didn't know I existed. I became withdrawn and my grades suffered (taking 17 hours of classes didn't help). I did best in the two classes I had registered for without my advisor's approval—junior/senior level classics and political science courses in which I was one of 20 students. I made it through the school year, went home for the summer, and took stock of my situation. I made changes, and I made it out of there three years later. 

My depression and anxiety didn't resolve with graduation. My first job as a reporter meant always being on call, covering murders and deadly accidents, never knowing a holiday, and hardly seeing my parents. Perhaps I should have taken it as a sign that the newspaper had a group discount rate with a local counselor. At my first appointment, I spent the full hour talking to her but looking at her two dogs whose soft, soothing ears and warm brown eyes invited me to be honest with myself. 

My second counselor came into my life after I had triple bypass surgery that resolved a host of problems but created a new relationship with my body that I did not know how to negotiate. My third counselor and I stuck together for years, and he created an environment in which I was safe enough to explore my teenage traumas and tackle issues that prevented me from being as emotionally present as I wanted to be for my husband. 

I could not and would not have successfully navigated the past 15 years to get where I am now without help from mental health professionals. Their training in turn trained me how to help myself. Like any expert, they had knowledge that I did not. If I had wanted to rebuild an engine, I would have gone to learn from a mechanic. If I had wanted to learn how to fly, I would have gone to learn from a pilot. If I had wanted to learn how to paint, I would have gone to learn from an art instructor. I wanted to learn how to best care for my mental, emotional, and physical self, so I went to learn from a counselor. 

And there's not a single day that I regret doing so. 

Does my diagnosis mean that there's a mark in my medical file? Yes. Does that mean that I'll never be hired to become part of the CIA's spy network? Yes. Are those things more important than the fact that I am happier and healthier than I ever would have been without addressing my mental health needs? No. Is it fair that some people will and do judge me for taking this action to advocate for myself? No. Do I particularly care that they do? No because it is clear that they missed the anatomy lesson explaining that the brain is an organ—an extremely complex organ, the mysteries of which we are so very far from understanding. 

At Medicine X, I will be moderating a panel: "Depression in Chronic Illness and Coping Through Online Communities." In order to open the conversation to as many who wish to participate and address questions may not find answers elsewhere, I am asking you—yes YOU—to pose your questions to the panel. 

All questions submitted as a comment to this post between Sunday, Aug. 24 and Wednesday, Sept. 3 will be considered. Panelists will choose one question from those submitted to answer from the Medicine X main stage. Anyone interested in the conversation may tune in to Medicine X's through the Global Access Program, which will feature this main stage panel discussion from 5:25 to 6:10 p.m. Pacific Time on Saturday, Sept. 6. Real time commentary will be happening on Twitter via #MedX

After the conference, panelists will have the option to respond to additional questions in writing through a series of blog posts. 

Help us shape this important discussion about depression, chronic illness, and online resources. What do you want to know? Leave a comment to submit your question, and if you're on Twitter, connect with panelists at: @AfternoonNapper, @bacigalupe, @DrBeckerShutte, @ekeeleymoore, @Hugo_OC, @Strangely_TI