Tuesday, December 24, 2013

How many other people continue to be similarly misdiagnosed?

As many are discovering, it is wonderful to connect with people who had or are having similar (nightmare) health(care) experiences. Dolly Parikh recently informed me of another such person who had experiences similar to mine: "Your blog and story has provided a lot of encouragement and tips for her and she looks up to you like a celebrity and her hero."

"Celebrity" and "hero" are labels I would apply to yet another person who had experiences similar to mine: Susannah Cahalan. In the book, Brain on Fire: My Month of Madness, Susannah details the struggles she had with a U.S. healthcare system that misdiagnosed her illness several times, including wanting to lock her up in a mental facility as a schizo-affective. Fortunately, Susannah's family and boyfriend fought what they considered to be misdiagnoses, and she was eventually correctly diagnosed with a rare autoimmune disease that attacked her brain.

Susannah was lucky. "Right time, right place." But, "we live in a time when the rate of misdiagnoses in the United States has shown no improvement since the 1930s." The first neurologist she saw...
"...considered one of the best neurologists in the country, had never heard of (the disease I had). ... While he may be an excellent doctor in many respects, (he) is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It's a bad system. (He) is not the exception to the rule. He is the rule.
I'm the one who is an exception. I'm the one who is lucky. I did not slip through a system that is designed to miss cases just like my own -- cases that require time and patience and individualized attention. Sure, when I talked to him, I was shocked that he knew nothing about the disease, but that wasn't the really shocking part: I realize now that my survival, my recovery -- my ability to write this book -- is the shocking part."
I did slip through the system designed to miss cases like my own, so my survival, my recovery is perhaps even more shocking. Many don't make it. As Susannah states, "If it took so long for one of the best hospitals in the world to (diagnose my illness correctly), how many other people (are) going untreated, diagnosed with a mental illness or condemned to a life in a nursing home or a psychiatric ward?"

Reading Susannah's book was an emotional experience for me. So much of her experience of her illness and the healthcare system was similar to mine. Susannah writes, "I believe this book has lent many people legitimacy to their suffering. I've given them a name for what ails them, and for others who still don't have a name, I've given them hope."

If your experiences have also been similar to mine, read Susannah's book, check out Susannah's website, and consider giving me a holler. Hang in there; there is hope.

(Thanks to Katie McCurdy for recognizing the similarities between my experiences and those of Susannah, and for sending her copy of the book to me.)

Friday, October 4, 2013

Sharing my story (on my back)

I've told much of my nightmare healthcare story via this blog, but I haven't spoken about it or updated it much for a long time. Even when I spoke in the patient stories track at Healthcare Experience Design 2013 this past spring, I began my talk with a few words about the start of my story, then quickly summarized things, then shifted the focus of my talk to words of advice to designers working in healthcare. Even with my current primary care physician, I have shared only a part of my story.

Something is going on.

This past weekend, I had the wonderful honor of attending Medicine X 2013. I attended as one of 30+ ePatient scholars, and as such, was often asked about my patient story. At the start of the conference, my response was always a short summary, shifting quickly to the attention I've been paying to what designers need to know or do to maximize their impact on the redesign of the healthcare system.

During the conference, several of my fellow ePatient( scholar)s took the stage to share their patient stories. They were vivid and rich, emotion-evoking gems, told with an impressive strength. Why doesn't my story flow from my mouth or keyboard any longer in such a fashion?

Also at the conference was the amazing Regina Holliday. Regina played multiple key roles during the conference, one of which was artist-in-residence. While in her artist role, Regina prepared to paint my patient story on the back of a sports jacket of mine to make me a member of the Walking Gallery -- a group of patient rights advocates donning jackets with their stories painted on their backs. "Resend me your story," Regina asked the evening before the conference began as I presented her with my jacket. Indeed, I wondered how she could possibly remember my story among the many to which she has been exposed. So I resent her my story -- or what I wrote of it in a email message I sent to her earlier in the year: a message which provided a summary of my story, pointing her to my nightmare healthcare blog and referencing my subsequent focus on advice to designers. I hoped that would be all she needed.

"I need you to come by to tell me your story," Regina pleaded to me during the conference, poised to paint on the primed jacket but not having enough or the right kind of information to proceed. I was getting nervous. Will I actually have to talk to her about details of my story, details I've been avoiding talking about?

Stop by I did, and indeed, I shared parts of my story with Regina that I haven't spoken about for a long time. And I became emotional while doing so -- akin to the emotion I experienced while listening to others tell their stories on stage.

I remain filled with emotion about my nightmare healthcare experience. I still cannot believe that medical personnel, members of my family, and people I thought were my friends could do what they did to me. Anger used to suppress the emotional pain, enabling me to share information about my experience. However, some of that anger has worn off, enabling me to be happy again but leaving many raw feelings exposed. So, I've sought some psychological distance between me and my nightmare story, choosing to discuss it rarely and often shifting the focus of the conversation to what I've been trying to contribute via my advice to designers.

But there is still considerable power in my story. And I can now wear my story on my back. I am ready to discuss my story again.

Two days ago, I wore my Walking Gallary jacket to the classes that I teach at the Academy of Art University. At the end of each class, each student shares something with the entire class that they consider to be inspirational. This time, I took a turn and shared the story of my jacket and the Walking Gallery as well as a part of the story of my nightmare healthcare experience. I became emotional while doing so, but the students were glued to my every word.

Thank you, Regina, for adding me to the Walking Gallary. It is truly an honor to be a member.

Thursday, September 19, 2013

Learning from ePatient( scholar)s

A version of this post has been published as an interactions magazine blog post.

Increasingly, patients are making invaluable contributions to the redesign of our broken healthcare system and the patient experience. Designers working in healthcare should be aware of and leverage these contributions.

Among the facilitators of this is Medicine X, a fabulous conference held annually in September at Stanford University. As stated by the conference organizers:
"Medicine X aims to bring together the best and brightest doctors, patients, academics, and industry leaders to talk about emerging technologies and how best to improve healthcare." 
"We seek to empower patients and give them a louder voice in healthcare discussions." 
"...patients are a core set of stakeholders. Yet they typically haven't been meaningfully represented and engaged at academic medical conferences. We want to change that."
To fulfill this goal, Medicine X invites select ePatient scholar applicants to attend the conference and some ePatient scholars to participate in the conference organizational and planning process. What is an ePatient scholar?
"ePatient scholar: 1. A specialist and expert who is highly educated in his or her own medical conditions and who uses information technologies (e.g., Internet tools, social networks, self-tracking tools) in managing their health, learning from and teaching others. 2. (Stanford Medicine X ePatient scholar) An educator and role model for other patients and health care stakeholders."
A valuable contribution provided by all of the ePatient scholars (and many, many other patients) is the story of their patient experience. Many of these stories are gripping, documenting much of what is wrong with healthcare and suggesting fixes. Some stories can be found in blogs; some stories can be found in online patient communities. During Medicine X, some stories are shared on stage. An example is that provided by Britt Johnson (pictured nearby) at last year's conference; the video of Britt's talk is essential viewing.

EPatient scholars' patient experiences form the basis of and provide the motivation for many of their additional contributions.

Two misdiagnoses and the urgent implant of a cardiac defibrillator made Hugo Campos realize how crucial it is for patients to engage in healthcare decision making with clinicians. This has prompted Hugo to tirelessly advocate for the rights of patients with pacemakers and implantable defibrillators to gain electronic access to the data collected by their electronic devices. Difficulty obtaining all sorts of medical records has led many to join Hugo in the call of "Give us our damn data." 

Unable to get a satisfactory response from doctors to her multi-year digestive problems, Katie McCurdy (pictured nearby) applied her design skills to the construction of a visual timeline of her symptoms and medical history. Katie's hope was that this timeline would communicate much more and more effectively than medical records or her usually rushed oral description in a doctor's office, and she has had some success with it. Wouldn't it be nice if such visual timelines could be created by or for other patients?

Important input to such a timeline might come from Symple, an app developed by ePatient scholar Natasha Gajewski for tracking symptoms. Natasha built this app because of the difficulty she had tracking the symptoms of her rare autoimmune disease between doctor's office visits. Symple is now used by tens of thousands of patients around the world.

Sean Ahrens (pictured nearby) is among the ePatient scholars who have made valuable contributions to what is increasingly referred to as peer-to-peer healthcare. Because of his and others' similar health needs, Sean designed and developed Crohnology.com, a social health network for patients with Crohn's, colitis, and other inflammatory bowel conditions. Crohnology.com lets patients share and learn what treatments work for others, track their health, and meet others near them. As stated in a recent MIT Technology Review article:
"The site is at the vanguard of the growing 'e-patient' movement that is letting patients take control over their health decisions -- and behavior -- in ways that could fundamentally change the economics of health care."
Many ePatient scholars help patients connect in other ways. Tweetchats are particularly popular. Three-time cancer survivor Alicia Staley's weekly tweetchat for the breast cancer community (#BCSM) is perhaps the best known of these. Alicia started this tweetchat to combat the extreme isolation she experienced. (To get a better sense of the importance of such connecting, see Katie McCurdy's blog post, "On Speaking Up.")

ePatient scholars share their insights in multiple ways. The contributions of the most well-known ePatient, Dave deBronkart -- a.k.a. e-Patient Dave -- have included a TEDx talk and an ebook entitled, "Let Patients Help."

Many share their insights via blogs. Katie McCurdy's blog, referenced above, is filled with gems. See her recent analysis of the use of the term "patient engagement" for another great post. Carolyn Thomas's great blog includes a related post. Sarah Kucharski, founder of FMD (FirbroMuscular Dysplasia) Chat (and pictured nearby), is another excellent blog writer; her recent post on patient engagement provides important advice to designers of health apps.

Advice to designers is among the contributions I have made. As you might know from my interactions magazine blog posts alone, my writing and speaking on healthcare system and patient experience redesign have been focused, in part, on identifying what designers need to do in order to have maximum impact on that redesign. See, for example, "Are You Trying to Solve the Right Problem?," "What Designers Need to Know/Do to Help Transform Healthcare," "The Importance of the Social to Achieving the Personal," and the blog post you are now reading.

In short, there is much to learn from ePatient scholars, and you can learn more from and about most of those highlighted above as well as the other ePatient scholars attending Medicine X this year by accessing the 2013 ePatient ebook put together by the conference organizers. Use this ebook (and this blog post) as starting points to include the oft missing voice in the redesign of healthcare and the patient experience: that of the patient. Better yet: come meet us all at the conference September 27-29; we'll be happy to talk to you.

Saturday, April 27, 2013

What designers need to know/do to help transform healthcare

 A version of this post has been published as an interactions magazine blog post.

I've been immersing myself in all things focused in some way on dramatically changing the U.S. healthcare system and the patient experience. This has included attending lots of events. Last week, I attended the Health Technology Forum Innovation Conference. Two weeks ago, I attended the Second Annual Great Silicon Valley Oxford Union Debate focused on whether Silicon Valley innovation will solve the healthcare crisis. Near the end of March, I attended both a panel discussion about "Improving the Ethics and Practice of Medicine" and hxd (Healthcare Experience Design) 2013. ... (The list goes on and on.)

I've also been writing and speaking about this topic as well. Recent examples include the blog post I wrote for interactions in December entitled, "The Importance of the Social to Achieving the Personal" (in healthcare) and my presentation at hxd 2013 entitled, "Preventing Nightmare Patient Experiences Like Mine" (subtitled, "Avoiding 'Putting Lipstick on a Pig'").

As most agree, the U.S. healthcare system and patient experience are badly in need of disruptive innovation, a transformation, and/or a revolution. Hence, the subtitle of my hxd 2013 presentation implies that there are things (UX) designers need to be aware of or do (or not do) so that they can do more than only contribute to modest improvement of the status quo.

What are those things? The things I addressed in that presentation:
  1. too many designers are too enthralled with technology and too focused on digital user interfaces to have a great impact on transforming healthcare;
  2. human-centered design as often practiced is better suited for achieving incremental innovation instead of the disruptive innovation most needed -- Don Norman and Roberto Verganti have written a great essay about this;
  3. design research too often falls short of revealing the nature and dynamics of the socio-cultural models at play that need to change;
  4. design research too often focuses on common cases instead of the "edge" cases which can more identify or reveal emergent and needed innovation;
  5. essential to solving the "wicked problem" of healthcare is reframing it, something not all designers do adequately -- Hugh Dubberly and others addressed this particularly well in an interactions magazine cover story;
  6. designers need to get picky about the kinds of healthcare projects they work on.
(See the presentation for more on each item in the list.)

What would you add to this list? Is there anything in the list you question? Let's have a conversation. Please comment below or contact me via email at riander(at)well(dot)com.

And if you hear of any events you think I might be interested in attending...