Category Archives: Healthcare

Since Katrina, Part One: #SinceKatrina, #Katrina10, #Katrina10Years

Katrina Memorial

It’s been 10 years since Hurricane Katrina. Hurricane Katrina changed my life, in many ways. I want to talk about health information challenges then and now, how the information landscape has changed, but that will come in Part Two. For today’s post, I want to honor many of the other voices and conversations around this anniversary. The hashtags collecting these are:

#Katrina
#Katrina10
#Katrina10Years
#SinceKatrina

People are telling the stories of what happened then, remembering, grieving, sharing anger and hurt that has barely faded. Others are analyzing again what went wrong. A few are celebrating survival and growth. Many are looking to the lessons learned and what must happen to prevent this happening again. There are many worthy stories, opinions, ideas, and ideals here. I’ve selected just a few.

STORYTELLING: THEN & NOW | HEALTH & MEDICAL | HISTORY, MUSEUMS, EDUCATION, & LIBRARIES | RESILIENCE, LOSSES, & LESSONS LEARNED | PROGRESS & NEW TOOLS

STORYTELLING: THEN & NOW

HEALTH & MEDICAL

HISTORY, MUSEUMS, EDUCATION, & LIBRARIES

RESILIENCE, LOSSES, & LESSONS LEARNED

PROGRESS & NEW TOOLS

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The WORST Thing About Depression is …

Pic of the day - Not a Happy Musical

There is a fantastic, passionate, profoundly honest, deeply wrenching effort going on RIGHT NOW to try to take the stigma out of depression. What I’m talking about is the movement gathering under the hashtag #TheWorstPartOfDepressionIs. People are telling their stories, and the stories of those they love, with and without names, but always with bald-faced honesty. They describe the ways in which expectations, interactions, judgments, sensations, and experiences serve to compound what is already a paralyzing destructive illness. Here are just a few of these amazing tweets.

* THE BLOGGESS

* EXPECTATIONS

* INTERACTIONS

* JUDGMENTS

* SENSATIONS

* EXPERIENCES

LAST BUT NOT LEAST

At The Movies: Tactile Art & Tech for Autism

David Chesney is Back. This Time With Sean Ahlquist (Art & Architecture) and Sile O’Modhrain (Music). The project being highlighted this time is designed to use a flexible stretch “coloring book” to provide a kind of engaging biofeedback to children with autism regarding the amount of pressure they are using. This would have been fantastic to have when my son was small.

David Chesney: “The research that I do here at the University of Michigan is at the intersection of technology and childhood disability.”


Tactile Art | MichEpedia | MconneX https://www.youtube.com/watch?v=uQU7ZhMvH2k

University researchers and students create device designed to aid in Autism therapy https://www.michigandaily.com/news/university-researchers-and-students-different-fields-study-create-device-designed-aid-autism-th

More videos about the project from Dr. Ahlquist.

Social Sensory Surfaces Research Project from Sean Ahlquist on Vimeo.

Social Sensory Surfaces Research Project https://vimeo.com/125392278

Stretch|PLAY from Sean Ahlquist on Vimeo.

Stretch|PLAY https://vimeo.com/125633678

Social Sensory Surfaces: http://taubmancollege.umich.edu/research/research-through-making/2015/social-sensory-surfaces

Related work from Dr. Chesney on his work with autism.


Software Engineering Class Hacks Autism https://www.youtube.com/watch?v=CUT-Chcffqc

Digital avatars help children with autism – w/video http://www.autismdailynewscast.com/digital-avatars-help-children-autism/21463/snapshot/

Hacking Autism and University of Michigan https://www.autismspeaks.org/blog/2012/05/01/hacking-autism-and-university-michigan

Video games help autistic students in classrooms http://usatoday30.usatoday.com/news/health/story/2012-05-31/video-games-autism-students/55319452/1

More interesting projects by Dr. Chesney & his students.


Untapped Resonance: David Chesney at TEDxUofM https://www.youtube.com/watch?v=GO9HSiUMylE


Engineering with Grace: https://www.youtube.com/watch?v=aDjYoyYfUQE
Engineering with Grace: Software class aims to help one teen communicate: http://ns.umich.edu/new/multimedia/slideshows/21712-engineering-with-grace-software-class-aims-to-help-one-teen-communicate
Computer Science with Soul: http://dme.engin.umich.edu/grace/


Provost’s Seminar on Teaching – Presenter David Chesney https://www.youtube.com/watch?v=FDSwN1MEfnY

#ADA25! Tech + Touch + Targets: Part Two, “Our New Technology”

#ADA25 Amtrak New Accessible Technology #a11y

To continue the series on “what I did for #ADA25,” I’d like to talk about the very exciting event here in town last week, in which Ann Arbor sets the stage for a national high speed rail system, and access for persons with disability is at the core of making this possible.

#ADA25 Amtrak New Accessible Technology #a11y

AMTRAK

The event was the ribbon cutting for the new disability-accessible platform at the Ann Arbor Amtrak station.

“New disability-accessible platform opens at Ann Arbor Amtrak station” http://www.mlive.com/news/ann-arbor/index.ssf/2015/07/new_disability_platform_opens.html

The event started out with the mayor, Chris Taylor, describing the importance of the University of Michigan Health System and hospitals in providing advanced health care to the residents of the State of Michigan, and how critical accessible rail transport is for supporting this.

Lt. Governor Brian Calley noted, “Acceptance & awareness are important, but inclusion is a game changer.”

Richard Bernstein, Judge of the Michigan Supreme Court, waxed eloquent, clearly joyful and delighted with this innovation. You can hear his full remarks on Soundcloud.

Joe McHugh (Amtrak’s Senior Vice President) described this as “the flagship of our new technology,” continuing with the vision and possibilities that would come from this.

Joe really meant technology, too! The new boarding platform is retractable, and extends toward the train when in use. The Amtrak press release describes it as “The platform mechanically extends toward the train, bridging the gap created when a level-boarding platform is needed. This next generation of passenger-focused technology will allow America’s Railroad® to deliver a modern passenger railroad that is accessible to all.” That wasn’t the limit of the tech, either. In addition to designing the platform, the interactive portions of the tech, they also had to design manual tech to support the process in case of problems with the automated portions or for situations that require special extra support.

#ADA25 Amtrak New Accessible Technology #a11y

As with all ribbon-cutting events, the actual story started long long before. Or stories, I should say. This event sprang from the intersection of many stories, many people’s experiences. There are the local folk who fought for a better way to take the train, and helped make people aware of the reasons why it should start HERE. There were wheelchair passengers who complained about being put on a jack, hoisted into mid-air, and left dangling in the rain while the station staff try to get the logistics sorted out. There were the Amtrak staff who helped people with luggage, moms with strollers, elderly folk climbing the narrow stairs into or out of the Amtrak cars.

The story that resonated most powerfully with me was told by Richard Devylder, the U.S. DOT’s Senior Advisor for Accessible Transportation.

#ADA25 Amtrak New Accessible Technology #a11y

Richard was born without arms or legs. The combination of his experience, his intelligence, his connections with the community of persons with disabilities all help to inform his position and influence change. And when the opportunity presents itself, he absolutely will go for the brass ring.

That’s kind of what happened one day a few years ago. Richard described a room full of transportation higher ups. He asked, “Well, do you want to see high speed rail in the United States?” Yes, yes, yes, they all did. The next thing Richard said? “Then you have to find a way to let people like me board the train in less than 15 minutes.” BOOM.

That was one story. He had another good one. Richard described one day when he was trying to get on the train, and a ramp had been set up to allow him to board. But he couldn’t even get on the ramp because it was so crowded with people. Elderly with walkers. Parents with strollers. People with heavy rolling bags of luggage. Part of him thought, “Hey, why are all these people blocking my ramp?” Immediately he realized it is because all of them also needed a ramp, and the one provided for him was the only one there. BOOM #2!

We need ramps for boarding trains absolutely as much as we need curb cuts. The next ADA25 story I’ll be telling is about a group of people in virtual worlds. They were pretty impressed when I told them about this new Amtrak platform. Then they asked, “But why did it take 25 years? And why is there only ONE in the entire United States?” More on that in the next post.

The actual ribbon cutting, with Gary Talbot as the honored local person who pushed the hardest to make this happen.

And then people could board!

#ADA25 Amtrak New Accessible Technology #a11y
#ADA25 Amtrak New Accessible Technology #a11y


Updated to include Gary Talbot’s name.

#ADA25! Tech + Touch + Targets: Part One, “I couldn’t type a hug.”

Screenshots from the White House video of President Obama Celebrating ADA25

Yesterday was the 25th anniversary of the signing of the American with Disabilities Act. I want to describe three technology events that happened around the theme of celebrating this milestone! These three stories include high speed rail, robots, assistive communication devices, virtual worlds, web accessibility, exoskeletons, 3d printing, and more. That’s the tech. But the touch is just as important, if not more so, and the question of what’s left that needs doing is the idea of defining and meeting our targets. Let’s get started.

WHITE HOUSE

First, President Obama celebrated, of course, with many people. One was Haben Girma, the first deaf-blind graduate of the Harvard Law School. The President would type words to talk with her, and she would listen with her hands on a machine that translated the typing into Braille. “I couldn’t type a hug,” he said.

Screenshots from the White House video of President Obama Celebrating ADA25Screenshots from the White House video of President Obama Celebrating ADA25

Alice Wong, of the Disability Visibility Project, attended the event through her telepresence robot, and wrote about it later, here.

Screenshots from the White House video of President Obama Celebrating ADA25

The White House has made available both the highlights video (under 3 minutes) and the complete event (about 1.5 hours).


President Obama Celebrates the 25th Anniversary of the ADA https://www.youtube.com/watch?v=SZCQT-DYVNY


President Obama Speaks at the 25th Anniversary of the Americans with Disabilities Act https://www.youtube.com/watch?v=pUI-TUFlteU

Towards the end of his remarks, President Obama described the how his father-in-law’s experience with multiple sclerosis helped to shape his passion for reducing barriers for persons with disabilities, and his awareness of how access to necessary resources can help people grow into their potential, and how that helps all of us.

“And just an aside on this, for a long time, he would not get a motorized wheelchair because he had gotten this disability at a time when they weren’t available and it was expensive, and they weren’t wealthy, and insurance didn’t always cover it. And it just gave you a sense of — Michelle and I would talk sometimes about how much more he could have done, how much more he could have seen — as wonderful as a dad as he was, and as wonderful as a coworker as he was, he was very cautious about what he could and couldn’t do — not because he couldn’t do it, but because he didn’t want to inconvenience his family and he didn’t want to be seen as somehow holding things up.” Remarks by the President on The Americans With Disabilities Act https://www.whitehouse.gov/the-press-office/2015/07/20/remarks-president-americans-disabilities-act

What Patients Think about Clinical Trial Engagement (#patientchat)

At the Doctor's Office

I had really wanted to participate in this Twitter chat today (#patientchat), on how patients find clinical trials, decide to engage with them, what resources they use, their expectations, and their concerns. I missed the chat, but it is archived in Symplur, so I was able to scroll through, search, dig, prowl around, and find my favorite bits. Since I went through all of that, I thought I’d share it. I’d recommend reading more deeply in the transcript for anyone in clinical trial research or recruitment, patients with basically any kind of diagnosis (as Mighty Casey eloquently said), people interested in translational medicine (where patients play a crucial role), as well as clinicians. Evidently, patients consider clinical trial recommendation from the primary care clinicians to be an obligation, not an optional part of providing care. Who knew? I bet we could automate relevant clinical trial notifications in EHR and as part of clinic visit prep. Why not? Explore below and see what other surprises and creative nuggets appear.

Emerging Tech, Healthcare & Comics for World Book Day #WorldBookDay

Bedroom Books, Unread, Part 1

One book, two books,
Red books, blue books,
Fat books, thin books,
Old books, new books.
This one has a gold leaf spine,
This one sings a little rhyme.
I could read books all the time!
(a Dr. Seuss parody by yours truly)

Let’s just say I sometimes WISH I could read books all the time. And a great deal of my house looks like the photo. For today, World Book Day, I want to just mention a few (a VERY few) books I’ve been reading lately which may be of interest to readers of this blog.

First off, some that connect directly to healthcare social media, emerging technologies, accessibility, disability, and health literacy — some of my favorite topics!


Digital Humanitarians
Digital Humanitarians, by Patrick Meier: http://www.digital-humanitarians.com/

I love the #SMEM community and #SMEMchat. SMEM stands for Social Media Emergency Management. Think of it as how we use social media for disaster and crisis response. I’ve touched on these topics here before, and will again. When I saw that a book had come out specifically on this, I was delighted. And it had even more — the roles of open data, open source software and tools, citizen science, and crowdsourcing. So HUGELY exciting. I couldn’t wait for the library to get a copy, I had to borrow it interlibrary loan. Then I listened to the webinar with Patrick, hosted by NNLM. Then I didn’t want to give back the copy I’d borrowed, so I had to buy a copy. And then I made SURE the library bought a copy. Well worth reading, in case you haven’t guessed.


Digital Outcasts
Digital Outcasts: Moving Technology Forward Without Leaving People Behind, by Kel Smith: http://digital-outcasts.com/

I’ve been raving about Kel Smith’s book, Digital Outcasts. Kel does a brilliant job of not just look backwards at the intersection of disability, accessibility, and technology, but looking forward. He forecasts new technologies arising and some of the new ways in which they will create barriers to access for people. This one the library has, and they have it electronically.


Conquering Concussion
Conquering Concussion: Healing TBI Symptoms With Neurofeedback and Without Drugs, by Mary Lee Esty & C. M. Shifflett: http://conqueringconcussion.net/

Another one I bought for my own collection is Conquering Concussion, which got a rave review from Kirkus and then was listed as one of the top indie published books of 2014. Let’s just say that I have had enough concussions of my own for this to be personally relevant. Then it turned out that the authors are friends of a friend. Small world. Good book.


The Guide to the Future of Medicine: Technology AND The Human Touch
The Guide to the Future of Medicine: Technology AND The Human Touch, by Bertalan Mesko: http://themedicalfuturist.com/

Berci and I have known each other through social media since he was a med student. And now he’s NOT a medical student anymore, is a world recognized expert on emerging technologies and social media use in healthcare, a highly sought after public speaker, and he writes books. This one I bought as an e-book, because I wanted to highlight like crazy, and be able to download all my highlights in a nice tidy lump (something made much easier by reading the book on a Kindle!).


Last but not least, I’m brainstorming how we might make a webcomic about health literacy skills. Sounds like a really boring topic, eh? But the books I’m reading to do research on the idea are anything but boring.

Wrinkle in Time, Graphic Novel
A Wrinkle in Time, a Graphic Novel, by Madeleine L’Engle and Hope Larson: http://www.hopelarson.com/portfolio-item/a-wrinkle-intime/

This one isn’t remotely medical. Instead, it’s a book I’ve read over and over throughout my life, for which I own multiple editions in various formats, and Hope Larson went and turned it into a graphic novel (ie. comic book). You would not believe how much trouble I’ve had wrapping my head around how to tell a story in a comic. It’s not like I don’t read comics. It’s more like, well, brain freeze. This book got me over the first hurdle. Because I know the book so well in other forms, I could more easily understand how the story changed and stayed the same as it morphed into a more visual format.

On Purpose
On Purpose, by Vic Strecher: http://www.dungbeetle.org/

I’ve known Vic Strecher professionally for many years, probably almost as long as I’ve been working here at the University of Michigan. When I heard that Vic’s daughter had died it was like a punch in the gut, even though I’d never met her. I couldn’t imagine. I’m a mom, and there is no more terrifying thought than that something like this might happen to one of my kids. When Vic wrote a comic book about his experience, and how this became, for him, an opportunity for personal growth, I had to get a copy. And this book is what helped me see how a personal story can become a universal story. Seeing how this transformed into a comic book / graphic novel helped me to see opportunities in my own life for stories that could possibly be transformed into comics.

Oh Joy, Sex Toy (review)
Comic Reviews: Oh Joy, Sex Toy (by PF Anderson) http://www.graphicmedicine.org/comic-reviews/oh-joy-sex-toy-2/

Last month I was asked to review a copy of Erika Moen’s new nicer-than-average comic book on sex toys and sex education. You know. Oh Joy, Sex Toy? Trust me, most of the college age folk already know about it.

Erika Moen
Erika Moen

You can read my review for the basics about the book (which is printed with nice ink on absolutely gorgeous paper, if you’re into that sort of thing). For me, the most exciting part of the book was in the appendix, where Erika did a funny little comic about one day in her life, sketching one panel for each hour. LIGHTBULB! Now, I can see how all the pieces fit together: comic formatting, personal experience, and story telling. Next, I’m hoping to find time to actually make one. I’m nervous. Wish me luck! And inspiration!