Category Archives: At the Movies

Stack O’ Books — Sources on Transparency and Privacy. Part Six

Stack O' Books


There is some evidence that the diffusion of a scientific innovation is a fashion-like process in which influence is transmitted through steadily expanding networks of scientists. Thus it is plausible to view science as an enormous cluster of innovations, of which the most successful are diffused by means of a contagion process that produces a logistic curve in all facets of scientific activity. Behind the seemingly impersonal structure of scientific knowledge, there is a vast interpersonal network that screens new ideas in terms of a central theme or paradigm, permitting some a wide audience and consigning many to oblivion. (p. 76)

Invisible Colleges (1972), by Diana Crane.

Comment: Some debate the scholarship and design of the research on which this work is based, but say what you will, this was at that time one of the works that most influenced thought on how social relationships shape knowledge and our understanding of scientific discovery. Much of our current work on the influence of social networks on scholarship and policy development is based at root on the thoughts expressed in this book by Diana Crane. The influence of this book extends far past academia to the design and development of such now-everyday tools as Facebook and Twitter, and even to popular culture, with this anecdotal example:
IF “Invisible = Unseen”
AND “College = University”
THEN “Invisible College” = “Unseen University”.


It makes sense that having two cerebral hemispheres that process information in uniquely different ways would increase our brain’s capacity to experience the world around us and increase our chances for survival as a species. Because our two hemispheres are so adept at weaving together a single seamless perception of the world, it is virtually impossible for us to consciously distinguish between what is going on in our left hemisphere versus our right hemisphere. (p. 28)

My Stroke of Insight (2006), by Dr. Jill Bolte Taylor.

Comment: There were two specific ways in which this book caught my interest. One was this concept shown in the quote above that apparent opposites need not necessarily actually function in opposition to each other, but may instead be complementary and necessary aspects of forming a functional whole. The other aspect is the idea that we cannot easily perceive that which is part of our body or part of our existence when it functions normally, but only when it does not. Like Dr. Jill, I also suffered a kind of brain damage, most notably when I suffered severe chronic long term carbon monoxide poisoning a dozen years ago. We are often told that we cannot feel things inside our brain, but as part of the damage and healing process, I had powerful visceral sensations associated with trying to think about memories or skills located in the damaged area, as well as the sensations of the neurons sending out new or extended axons, probing around the damage, trying to find a new path to the old information. Similarly, we don’t tend to notice our feet unless they hurt, our lungs unless we are struggling to breathe, etcetera. Both of these are important lessons not just for how we as individuals listen and learn, but also how professions discover creativity, nations change economic and policy strategies, and possibly even for us as a species.


How it feels to have a stroke. http://www.youtube.com/watch?v=UyyjU8fzEYU

At the Movies: Microbiomes

Following up on my post last week about the Human Microbiome Project. There are so many great video clips on that and related topics, that I wanted to do this second post as well.

To start off, let’s look at Larry Smarr’s video of how he is studying his own personal microbiome, what he has learned about his own health, and how it has changed his life.

Larry Smarr: My N=1 Experience (2012 GET Conference) http://www.youtube.com/watch?v=BzoXJbRvPxs

If you are remotely intrigued by what Larry said, then you might want to check into the uBiome project, a citizen science endeavor allowing you to explore your own microbiome.

uBiome http://vimeo.com/53757258

uBiome from uBiome on Vimeo.

Now, more videos about the Human Microbiome Project itself. The first is an interview with Dr. Julie Segre, who has oversight of the project; the second from University of Michigan faculty member, Dr. Vincent Young.

The NIH Common Fund’s Human Microbiome Project. No Longer Germ Warfare. An interview with Dr. Julie Segre, NIH Intramural Researcher, The NIH Common Fund’s Human Microbiome Project. http://www.youtube.com/watch?v=LfeNTQxxn0w

The NIH Human Microbiome Project, Vincent Young MD PhD from The University of Michigan. http://www.youtube.com/watch?v=pPU2BrvLSbA

Three videos describing more about the concepts behind idea of the human microbiome. One is a lecture from Stanford faculty member Julie Theriot, another by the most expert Julie Segre, and the third just because I like it and find it one that is relatively easy for people to understand.

The World Within Us: Microbes That Help and Harm (October 27, 2009) Julie Theriot, Stanford University) http://www.youtube.com/watch?v=dedlL8l0YIM

Genomics of Microbes and Microbiomes – Julie Segre (2012). http://www.youtube.com/watch?v=ER3CWRiOARM

The human microbiome and what we do to it http://www.youtube.com/watch?v=EEZSuwkx7Ik

Last but not least, a selection of videos looking at implications of the human microbiome in specific areas of the body or of our health, from bowels to brain.

Mind-Altering Microbes: How the Microbiome Affects Brain and Behavior: Elaine Hsiao at TEDxCaltech http://www.youtube.com/watch?v=FWT_BLVOASI

Microbiome: The Ecosystems Living on Your Body http://www.youtube.com/watch?v=f1HWZTlmcCU

This section is all about the microbiome of the human gut.

Mike Mutzel. Intestinal Microflora, Gut-Metabolic Cross talk and Human Microbiome Project Update http://www.youtube.com/watch?v=ky5cBM9j7NE

Eric Alm: A year in the life of my gut microbiome (2012 GET Conference) http://www.youtube.com/watch?v=M4p3JI7s1dw

The gut flora: You and your 100 trillion friends: Jeroen Raes at TEDxBrussels http://www.youtube.com/watch?v=Af5qUxl1ktI

If you are still hungry for microbiome videos, Jonathan Eisen has a fantastic collection in a playlist, there is another playlist from Fora.TV at the Compass Summitt conference in 2011, and Yohanan Winogradsky’s entire Youtube channel is devoted to the topic.

Jonathan Eisen. Human Microbiome (playlist). http://www.youtube.com/playlist?list=PLC848629C82162FB0

The Dark Matter of Biology (Compass Summit 2011) http://fora.tv/2011/10/25/The_Dark_Matter_of_Biology

Yohanan Winogradsky (channel): http://www.youtube.com/user/microbiome/videos?view=0

Stack O’ Books — Sources on Transparency and Privacy. Part Four

Stack O' Books


As Larry Lessig says, “A political response is possible only when regulation is transparent.” And there’s more than a little irony in the fact that companies whose public ideologies revolve around openness and transparency are so opaque themselves. (p. 229)

The Filter Bubble (2011), by Eli Pariser.

Comment: The Filter Bubble is deservedly famous. Like several other books in this post, choosing one quote was a real challenge, there is so much of value in the work as a whole.


Eli Pariser: Beware online “filter bubbles” http://www.youtube.com/watch?v=B8ofWFx525s


The issue is whether or not research and development should continue to proceed solely in the direction of information-dispensing systems. By this we mean the providing of efficient procedures for dispensing pertinent and only pertinent information in immediate response to queries by researchers at the frontiers of their specialty. The stand taken here is to suggest an alternative goal for information-retrieval systems which deserves greater priority than the dispensing of information. This alternative is to assimilate and weld newly generated knowledge into a coherent overall image at sufficient speed, so as to counteract the tendency of knowledge to scatter centrifugally into isolated fragments; to impart understanding rather than dispense information; and to aim to serve primarily the interested nonspecialist and only secondarily the skilled specialist. Whereas the keyword of most enterprises and projects in information retrieval is access, the keywords proposed here as an alternative as evaluation and synthesis. (pp. xi-xii)

Growth of Knowledge (1967), edited by Manfred Kochen.

Comment: If you only get one book by Fred Kochen, make it this one. Look at this! 1967! And this was when he first collected thoughts that shaped his vision of what became the World Wide Web. In the 1980s, when I took a class with him, he still was requiring portions of this as readings, and it was still mind-blowing. We talked about this collection and the related concepts fairly often, since this is where both of us shared so much intellectual passion and excitement. I was able to share with him one additional piece that he wanted to add to this collection if he ever reworked it, which never happened, due to his unexpected death not long after. The piece I shared was a section of Gordon Dickson’s The Final Encyclopedia, around page 100 and for several pages following, where Dickson first describes the shape and function of the ultimate encyclopedia.

Manfred Kochen 1987

At the Movies: 3D Printing

If you haven’t already heard of 3D printing, then we need to fix that right away. If you have heard of 3D printing, this post will probably be fun for you, and will hopefully still include some new information. I have talked about 3D printing here before, and still am hoping that in the renovation of the library where I reside there will included be a small makerspace complete with 3D printer. We wouldn’t be the first medical library to do so! At least one other medical library is currently in the position of deciding which model to purchase.

What is commonly called 3D printing was probably something you first heard about in the guise of a Star Trek replicator. Actually, it has been a real emerging technology about as long as Star Trek has been around, and was called “additive processing” (or so I’ve learned by watching the TED Talk video of Lisa Harouni and her “Primer on 3D printing”).


Lisa Harouni: A primer on 3D printing: http://www.youtube.com/watch?v=OhYvDS7q_V8

The earliest patents on this came out of efforts to print circuit boards, and were instrumental in the rapid decline of the cost of computers. There are now patents for how to print with biological materials instead of simply plastic and metal. Enormous advances. There is a fair amount of talk that this may be the year that 3D printing hits mainstream. Let’s just say that if the President of the United States is talking about it in his State of the Union address, that just might be a very realistic possibility.


President Obama on 3D Printing http://www.youtube.com/watch?v=01gJYQEyBWc

3D printing is becoming so ubiquitous that one of the grad students currently working in our library showed me the delightful 3D printed Valentine she received from husband, a box-puzzle that turns into a heart. There are so many amazing, wonderful, and scary things being made right now with 3d printing. Bicycles. Cars. Houses. Guns. Ammo. Jaws. Cartilage. Kidneys. Spaceships. Yes, really. Well, little ones, at least for the spaceship, anyway. We cannot imagine what will be created with 3D printing in the future.

Bicycles. Cars. Houses. Guns. Ammo. Jaws. Cartilage. Kidneys. Spaceships.


Microscale 3D printing of a spaceship: https://www.youtube.com/watch?v=wThtfAtB5U8


3d Printing – 3d Cloning A Bicycle – YouTube: https://www.youtube.com/watch?v=oChnml1Twy0


Rational automotive design for the human race: https://www.youtube.com/watch?v=yhJCTMkn9Yo
MORE:
Urbee 2 is the 3D printed Car of the Future: http://mashable.com/2013/03/01/urbee-3d-printed-car/
ExtremeTech: The First 3D Printed Car is as Strong as Steel and Half the Weight: http://www.extremetech.com/extreme/149557-the-first-3d-printed-plastic-car-is-as-strong-as-steel-and-half-the-weight


Fully-customized modular solar house is 3D printed prefab. https://www.youtube.com/watch?v=3R1CBFBxuew


3D Printing Gun Revolution: https://www.youtube.com/watch?v=b8qtJuOFbs4


Breaking Gamechanger: Printable Gun Magazines: https://www.youtube.com/watch?v=XKAaO26FAvA


Printing a Full new 3D Jawbone for Belgian Patient – Worlds First (Europe Innovation): https://www.youtube.com/watch?v=UsEtyhy81nA


3D printer and living “ink” create cartilage: https://www.youtube.com/watch?v=-RgI_bcETkM


Anthony Atala: Printing a human kidney: http://www.youtube.com/watch?v=9RMx31GnNXY

What’s next? What’s here?


Can we print a human body? https://www.youtube.com/watch?v=uJrTrIMbk9A

Well, and it isn’t like this doesn’t already happen on campus. In many places, most notably the 3D Lab and the Fab Lab. And has for many years. That last video right above is from UM. Here are some more. And look at the dates. Several of these are from within the past few weeks, but others go back years. We do this.


3D Printing: An Additive Solution: https://www.youtube.com/watch?v=y5ef7stKMe0


expoSItion: 3D printing in the developing world: https://www.youtube.com/watch?v=ThH6x09vZVE

And you know the Cube? As in the sculpture of the cube on Regent’s Plaza, in front of the Fleming Building, the one that spins around? Want one?


Endover Sculpture Puzzle: https://www.youtube.com/watch?v=fM5E__LAK4E

And the newest answer to what 3D printer is in the University Libraries? Right now they are praising the Dimension Elite. I’ve seen several different 3D printers there over the years, from MakerBots on up. I still want something accessible beyond the 3D lab, in a regular campus library, on the main campus, and preferably on the Medical Campus.

Want more videos about 3D printing?

Rapid Prototyping (playlist from UMich): https://www.youtube.com/playlist?list=PL222722191CF566C5

Bad Brad’s Bad Channel: 3d Printing Videos: http://www.youtube.com/playlist?list=PL7B951A6FDF7D81B9

Stack O’ Books — Sources on Transparency and Privacy. Part Three

Stack O' Books


A rough backroom brawler, [Vannevar Bush] inspired public support for pure research and helped to create some of the most terrible weapons ever known. The paradox of his career left him seeking a more benign, even avuncular image. Now the press helped him to construct one. This was no act of generosity; it was difficult for ordinary people to square how the finest among them could be both visionaries and killers, fiercely independent themselves and yet demanding of conformity in others. (pp. 355-356)

Endless Frontier (1997), by G. Pascal Zachary.

Comment: Vannevar Bush’s essential essay, “As We May Think,” electrified me when I first read it, close on the heels of the first article I ever read by Manfred Kochen. Together, they changed my world. This book tells the larger story around Vannevar Bush, giving the context that made his essay possible. I find it fascinating how his life encapsulated many of the conflicting dynamics of science communication with which we continue to struggle.


Vannevar Bush(1890-1973), Understanding American S&T Policy: the emerging crisis in historical perspective [Talk at KAIST(Prof. G. Pascal Zachary)] https://www.youtube.com/watch?v=82QHlhmoQXE


As standards for trustability continue to rise, the companies, brands, and organizations shown to lack trustability will be punished more and more severely. But the sting of the transparency disinfectant will be greatest when the wounds are new. Very soon, for competitive reasons, all businesses, old and new, will beging to respond to the increase in demand for trustability by taking actions that are more worthy of trust from the beginning — that is, actions that are more transparently honest, less self-interested, more competently executed, less controlling, and more responsive to others’ inputs.

Extreme Trust (2012), by Don Peppers and Martha Rogers.

Comment: The concept of extreme trust derives closely from David Brin’s work on transparency, and supports it, in a very earthy, realistic, and practical way.


Extreme Trust in Depth: Should trustability matter to healthcare companies? https://www.youtube.com/watch?v=i76FTLxSQoI

Stack O’ Books — Sources on Transparency and Privacy. Part Two

Stack O' Books


Bora: The main appeal of the Open Laboratory anthology to the bloggers is that it is a community-based project, and entirely transparent in its execution. … But there is something more to it than just how much bloggers love this book. It is seen as a bridge between the online and the offline worlds. Everyone involved buys extra copies to give to friends and relatives who are not as Web-savvy and may not realize what amazing writing transpires on science blogs. (pp. x-xi)

Jennifer: Far from being irrelevant , science blogging has emerged as an essential activity for science writers as we find ourselves with a professional presence on Twitter, Facebook, and Google+, not to mention “microblogging” platforms like Tumblr. And it’s become an equally essential tool for scientists themselves to connect and communicate with the general public. (p. xiv)

The Best Science Writing Online 2012, by Bora Zikovic and Jennifer Ouellette.

Comment: I love it when I observe similar thoughts being expressed by many different people before those ideas have yet hit mainstream. This signals the gradual emergence of a paradigm shift. In this series of books, the essays and authors they represent, the conference which gives them face to face time, and the enormous numbers of award-winning science books that come from these same authors and are birthed in part on their blogs, in these I believe I see the emergence of a paradigm shift in science publishing and scholarly publishing. Track this. They are important.


Open Science: Good for Research, Good for Researchers? https://www.youtube.com/watch?v=CFL0vbUOjfo


Influence, on the other hand, is often the currency that makes social processes work toward helping people attain what they value. Intellectual influences nourish and structure the growth of knowledge. Friendships help people obtain jobs, hearings from people in power, votes, advice, and so forth. “It is not what you know but whom you know that helps you succeed” is not all pejorative. People with great wisdom often also know and are known by a great variety of people. Among these are also included people with even greater wisdom. (p. 195)

Decentralization, Sketches Toward a Rational Theory, by Manfred Kochen and Karl W. Deutsch.

Comment: Fred Kochen was one of my mentors in grad school, and probably the one who most strongly influenced my vision of who I wanted to be and what I wanted to be able to accomplish in my career, the WHY rather than the WHAT or HOW. Fred was a true visionary, discussing, many decades ahead of their emergence, many of the issues that have become critical to our most important current debates on social dynamics and structures, information access, and more. He predicted the World Wide Web decades before it happened, and spent much of his career trying to build towards that. I have always found it ironic that he died the same week as the release of the first Web browser, Mosaic 1.0. He was a genius at collecting voices together to emphasize issues that would become important. This book, Decentralization, is one of those collections. Many of the most important ideas expressed in this book are ones he gather from or inspired in others. The thoughts that I’ve distilled from it coalesce in forms that I remember as being from the book, but which were never actually said there. I still find this an important collection.

Manfred Kochen 1987

Stack O’ Books — Sources on Transparency and Privacy. Part One

I wrote a chapter on transparency and privacy for the forthcoming Barbara Fister Festschrift. I mentioned this here before. Monday I got the word that the book is in the final stages and getting closer! I really spent a lot of time on that book chapter, and it was harder to write in many ways than my own book. I ended up with pages and pages of notes and quotations I wanted to use the chapter, roughly five times more pages of notes than actually went into the book chapter. And two very heavy bags of printed articles. And uncounted more downloaded articles. So I came home and took a picture of the stack of books I had kept handy while writing.

Stack O' Books

Wow. I didn’t manage to fit them all in to the chapter, but they really are wonderful books. Here are just a few tantalizing tidbits from these great thought-provoking works, with (where available) videos of the authors on the same or related concepts. Because when I finished this post, it was as long as a short book, I have broken this up into several posts.


This is a story of clashing ideologies and dizzying technologies. The ideologies did not arise with the popularity of America Online or the merger of Vivendi and Universal. In fact, they are among the oldest ideologies still around: anarchy and oligarchy. … These ideologies are rapidly remaking our global information ecosystem, and the information ecosystem is remaking these ideologies. … Freedom can be terrifying. Cultural and technological trends are increasing freedomg in ways many people find threatening. Yet the reactions (or more accurately “preactions”) to these trends are extreme, ill-considered, and imposed unilaterally without public discussion or deliberation: easy answers to difficult problems. More often than not, we have used technological quick fixes to avoid complex, serious discussion of the dangers posed by the increasing speed and amount of information. (pp. xi-xii)

The Anarchist in the Library (2004) by Siva Vaidhyanathan.

Comment: I was lucky enough to actually see Siva speak when he came to campus last year to present about his newer book on Google. I had come in late, not realizing how exceptional the presentation would be, and ended up standing in the back of the room in my heavy winter coat, tweeting madly on my phone to try to take notes. At this point I suspect anything he writes is worth a read!


Siva Vaidhyanathan, “Copyrights and Copywrongs” https://www.youtube.com/watch?v=8NsnEuz7_yQ


Consider what’s coming. Your genetic code will be imprinted on an ID card … for better and worse. Medicines will be tailored to your genes and will help prevent specific diseases for which you may be at risk. (But … your insurance company and your prospective employer may also find out that you are genetically disposed to, say, heart disease, or breast cancer, or Alzheimer’s.)

As the Future Catches You (2000, 2001), by Juan Enriquez.

Comment: This book does make a number of useful points, and provides a very quick high level synthesis of some of the relevant emerging technologies. Personally, I found the layout (creative graphic design, heavily broken up text, massive amounts of white space) irritating and frustrating. I suspect it was designed to slow down the reader and force them to pay closer attention to the text. In my reading, I felt that the design of the book interacted with the words to undermine the significance of content, to not give sufficient deep thought to the issues raised. I found it a useful exercise, as I was reading in these issues, to read through parts of this and watch for the moments when I wanted to jump up shouting at the author, since those helped me explicitly target some of what I felt needed to be said.


Juan Enriquez: The life-code that will reshape the future. http://www.youtube.com/watch?v=5KdOPY1Iqiw

At the Movies: Friends and Neighbors

Pain, awards, traveling autism, morphing metadata, potentially poisoned chocolate, technology use and drug abuse … It doesn’t sound like today’s videos have anything in common, but what they share is that all of them are either by people I know personally or are from places I’ve been and loved.



Empowering People for Community Health in Manistique, Michigan http://www.youtube.com/watch?v=Q-rajjRA9ds

Did you see that Manistique, Michigan is one of the winners of the Robert Woods Johnson Foundation Roadmaps to Health Prize? How awesome is that?! Completely aside from my loving the place, and aside from my mentor Maurita Holland having a long standing relationship collaborating with the tribe mentioned in the video, it’s just a great and inspiring story. I love the line, “Teach kids skills for a lifetime,” in the context of building healthy lives. I’m excited. You can see more videos about RWJF awardees in their grantee playlist. More info about the Manistique project here at the award announcement.



The United States of Autism Official Trailer http://www.youtube.com/watch?v=td1pxNXNjjU

While this isn’t exactly new as a Youtube video (originally uploaded in 2011) it is new in the sense that the movie the trailer was made for is finally actually OUT! The premiere in NYC is set for April. I found out through a Twitter friend of mine (TannersDadTim) who’s been working in support of this project for three years.

The United States of Autism: http://usofautism.com/ Arrange a screening: http://www.tugg.com/titles/the-united-states-of-autism

“Follow one man’s 11,000 mile, 40 day journey across the American landscape to visit twenty families and individuals affected by autism while searching for answers for his own son. With interviews from around the nation that include the widest spectrum of backgrounds – each conducted in the participants’ original language – the film weaves a broad and compelling tapestry across the spectrum of American life in all its faiths, disparities, colors, and cultures. What he learns along the way will change not only his life, but the lives of those he meets, forever. It’s a story about the best days that still lie ahead for our nation, the families, and the people who give America its heart.”



Cataloging Unchained http://www.youtube.com/watch?v=IQRHNdw2_yw

This one is for the librarians and metadata geeks in the crowd, and anyone with a sense of humor. My favorite line? “Metadata is inherently lazy. It just sits there unless you make it work. [sound effect: whip cracking]” Roy Tennant and I have known each other virtually, through email lists (mostly Web4Lib) and Twitter and professional publications, but have never met in person. I am delighted to see the library geeks talking about exploding library systems out into public and collaborative spaces.

“Created by Roy Tennant to introduce his talk “Leveraging WorldCat: Data Mining the Largest Library Database in the World” at the OCLC EMEA Regional Council Meeting 26 February 2013.”



RiskBites: Chocolate, Lead and the Measurement Conundrum http://www.youtube.com/watch?v=lZ6FvTU2rqk

I’m a HUGE fan of RiskBites, partly because I’m a fan of Andrew Maynard, and try to hang out over at his department on campus as much as possible. I have blogged about them here before. They just keep getting more and more interesting, and more and more intricate. This particular one is on such a great topic (chocolate!) and has really rich information resources in the video notes.



[Project] PainTrek – Mobile Pain Tracking and Analysis (Beta – v0.9) http://www.youtube.com/watch?v=CP8tvz2nmpY

I’ll be blogging more about this one later. Earlier this week (last week?) I livetweeted an event where this marvelous app was presented. PainTrek was the brainchild of Dr. Alex DaSilva in the University of Michigan School of Dentistry. I might add I worked in the School of Dentistry for over ten years, and have a deep and abiding love for the place and the people. Hearing Dr. DaSilva present on this and express so clearly his powerful desire to aid migraine patients didn’t do a thing to diminish that.



TEDxDesMoines – Peter Komendowski – Media Literacy: Mind Versus Mindful https://www.youtube.com/watch?v=8FwCUCquFsE

Last but not least, a video from TEDxDesMoines on media literacy. I grew up about a half hour from where this was recorded. The speaker, Peter Komendowski, isn’t someone I know, but he is an activist for Drug Free Iowa and talks here about the ways in which technology can be as addictive as drugs. This seemed especially timely, given that the National Day of Unplugging was just yesterday. Here are a couple of lines I really liked from his talk. “Tightness allows for a lot of efficiencies, but is it really humane?” “Do we really understand the difference between real and virtual?”

Rare Disease Innovation Driven By and Driving Open Science

PICT0029.JPG

When you hear the word “rare”, don’t you instinctively think of something precious, something unique and valuable, treasured and guarded and preserved with great care and tenderness? I do. The image above is of a medical magical amulet from the famed collection by Dr. Campbell Bonner.

An amulet is, “any object which by its contact or close proximity to the person who owns it, or to any possession of his, exerts power for his good, either by keeping evil from him and his property or by endowing him with positive advantages.” (According to Dr. Bonner’s definition, Bonner, C. Studies in Magical Amulets. Ann Arbor: University of Michigan Press, 1950. p. 2.)

Magical Amulets: http://www.lib.umich.edu/magical-amulets

I was working on the next installment of the Bubble/Blur series, but today is Rare Disease Day. A pretty special day, and pretty near and dear to my heart. Any time I wasn’t in meetings today, I was probably watching the inaugural NIH Rare Disease Day webcast, which was held partly in honor of the 20th anniversary of the existence of the NIH Office of Rare Disease Research. The event went on all day, and continues tomorrow.

Rare Disease Day @ NIH: https://events-support.com/events/Rare_Disease_Day/page/242

I didn’t get to see as much as I wanted. Not to diminish the other wonderful presentations that excited me so much throughout the day, but the most powerful part was at the end of the day, with the screening of the documentary “Here. Us. Now.”

Leading up to the screening, it was obvious from the atmosphere (which conveyed to me a sense of approaching awe) that the event planners knew we were about to see something very, very special.


Here. Us. Now. http://globalgenes.org/here-us-now/ Trailer: https://www.youtube.com/watch?v=LPK6pGFHAa0

“The Hempels’ story reveals the grim truth that rare disease is all too commonplace. Despite unprecedented investment in medical research and development, there are thousands of known rare diseases and disorders without treatments and cures. It’s a broken system moving at a tedious pace, and it leaves heart-rending personal stories in its wake.”

Both parents were experts in business with little knowledge of healthcare before their daughters were diagnosed with a rare fatal genetic disease (Niemann Pick Type C). Guess what? They are now the experts. They used their expertise in business to create what they describe as essentially a new business, a start up. It sounds almost like a “House that Jack Built” kind of story. The business focuses explicitly on doing the needed research, to share the results, to foster the necessary innovation, to drive the discoveries, to save their daughters’ lives.

What I was hearing as I listened and watched the movie were arguments in favor of a wholesale revisioning of the methods and practice and institutions of science, healthcare, publishing, and the governmental oversight agencies responsible for all of these. I want very much to have a chance to see the entire movie. I want to watch it closely. I want the DVD. I want to show it to people. I want to have a viewing here at the University of Michigan. I haven’t seen the entire movie, and I already want it to be required viewing for a wide range of people.

So you can better understand why I feel this way, I want to share just a few snippets of the ideas that most captured my attention in the tweets I sent while watching it, listening to them tell the story of the many barriers they encountered, and the solutions they created with determination, focused intent, planning, love, effort, and lots and lots of money; and the ways they used what they learn to advance the research in this area around the world, strategies they’ve share with other parents and families who share in these explorations and trials.

This is the story of one family. But this is also a story that encompasses virtually every major trend currently emerging in science and healthcare — the need for open access and open science, the empowered patient movement, personalized medicine, the difficult dynamic between transparency and privacy in healthcare and research, the shifting dynamic of how scholarship is defined and how knowledge is shared and how communities are built. These two parents have been transformed by their experiences with rare disease, have seized on to anything and everything that will let them make the difference they are trying to make. As a result, they are not just changing life for their own family, but for countless others. As they tell their story, they continue to change attitudes toward what is best practice in science research and healthcare innovation.

Another friend of mine said it rather well. This is not just what this one family is doing, although the story of the Hempel Family really is a lodestone for the entire conversation, but it is bigger than them. That is because all around the globe, every day, there are other patients and families doing the same kinds of things. Maybe not at the same scale or with the same scope, but trying to change things for themselves and others with their disease. Doing their own research and sharing it. Educating their doctors, who are NOT the experts in these rare conditions. Educating other patients on how to educate their healthcare team. And on and on. And what happens?

For the Hempels, they found not a cure, but a treatment. Something that helps. They were able to find friends and allies who helped them push it through the system, and get FDA approval to use this to help improve the quality of life for their children, and for others with the same condition. It really IS like magic. For the rest of us?

At the Movies: Games for Autism

Pic of the day - Puzzles

Gaming is of special interest with the ASD community. Here, ASD stands for Autism Spectrum Disorders, a range of conditions with some common elements but for which the names keep changing, thanks to the folks in charge of the DSM who recently removed Asperger Syndrome as a diagnosis. Personally, I happen to disagree with them, but that isn’t necessarily why I’ll continue to use both terms in this post (Autism and Asperger). Of necessity, most of these videos predate the name change, so it’s easier to use the common lingo from when the videos were made.

Gaming is big in ASD for a few different reasons. (1) Many kids and adults on the ASD spectrum show a strong affinity for games and gaming. One hypothesis is because it is easier to understand social expectations within the structure of games, or that the representations of social interaction in videogames are easier to understand than those with real people and all their complexity of body language and expression. (2) Gaming is being used for education, health behavior change, social change, and more. The combination of so many ASD folk connecting with gaming makes it a good match to reaching out to them to build needed skills and behaviors.

“Many children with autism spectrum disorders (ASD) have an affinity for video and computer games. CAR’s FaceStation project is designed to capitalize on this interest and use computerized games as a therapy.”
Center for Autism Research: Computerized Gaming. http://www.centerforautismresearch.com/trial_interventions/computerized_gaming/

Last year, University of Michigan engineering students were in the news for having developed some games for the Kinect for kids on the autism spectrum.

Toppo, Greg. Video games help autistic students in classrooms. USA Today 6/1/2012 3:10 AM,
http://usatoday30.usatoday.com/news/health/story/2012-05-31/video-games-autism-students/55319452/1

Since I couldn’t figure out how to get the video from that article to embed on WordPress.com, I went hunting for other videos showing ASD kids using the Kinect. Here’s one of the University of Michigan project.


EECSatUM: Software engineering class hacks autism: https://www.youtube.com/watch?v=CUT-Chcffqc

And one from the Lakeside Center for Autism, not developing tools so much as using existing ones.


Lakeside Center for Autism uses Kinect: https://www.youtube.com/watch?v=6ZEo7vLwgf8

And other gesture-based computing.


Severely nonverbal autistic teen uses Wii UDraw: https://www.youtube.com/watch?v=tMkDIhS7sSM

Now, thinking games and play as a window into social skills, here are a few other examples. MyFriendQuest teaches recognition of emotions in facial expressions.


Asperger’s Games: MyFriendQuest, the Trailer. https://www.youtube.com/watch?v=RXe86w8tJDI

So does this Secret Agent game for older kids.


Secret Agent Society Computer Game for Autism + Asperger’s Syndrome https://www.youtube.com/watch?v=jEJuvqMgbI0

Facial recognition is pretty common for autism games. There is a substantial series of face training games from the Center for Autism Research. This is just one.


Facestation Games:TrexTrample http://www.youtube.com/watch?v=qXvqQezcVAM
And other FaceStation games: Face Puzzle Fighter | Face Invaders | The Adventures of Pennsylvania Jones | TrainZoom | EmbedFaces | Dr. Face’s Potion Shop

There is actually evidence behind the idea of using videogames and role play for teaching and learning social skills.


Video Games and Social Skills https://www.youtube.com/watch?v=QJm8B4cwaeQ
Citations: http://www.ckolson.com/cites/
Pubmed: http://www.ncbi.nlm.nih.gov/pubmed/?term=(Autism+OR+Asperger)+AND+(Game+OR+Games+OR+Gaming)

And there are other kinds of games, not just computer games or video games.


Autism & Board Games at Autistically Inclined https://www.youtube.com/watch?v=XhqB-E3hgxk

One of the most phenomenal local resources for kids on spectrum is the Wild Swan Theater social skills theater summer camp. My son participated in it for a couple years, and it changed his life. Currently, he is majoring in theater in college. There aren’t any videos of Wild Swan doing their thing, but here is another video about the benefits of theatrical thinking and improv types of thought for people with autism.


TEDxBloomington — Stephen Volan — “Approaching Autism Theatrically”: http://www.youtube.com/watch?v=WN1bKV5nxy0

Games are also used to teach life skills, like this street crossing game.


DigitalSpace: Street Crossing Safety Game for Autistic Children, for DoToLearn.com https://www.youtube.com/watch?v=jiZuUyso4-0

MORE RESOURCES

Autism Games: https://sites.google.com/site/autismgames/

Learn by example from other parents how to play with your young autistic child to help them build needed skills. Includes social skills games, attention, and adventures. Check out their Game Collections https://sites.google.com/site/autismgames/home/games-pages

Autism Games (AU): http://www.autismgames.com.au/

A group from Australia provides free online games for children with autism. “The games are a free resource that aim to help autistic children to develop independent living skills. Please contribute to our forums and help us to develop more games.”

Whiz Kid Games: http://www.whizkidgames.com/

A more child-friendly interface to the games from Autism Games (AU).