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)
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.
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)
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.
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)
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.
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.
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)
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!
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.)
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.
I am WAY behind on my getting livetweeting sessions into the blog. I’ve been asked in particular for this one, so the first installment of catching up, I hope.
Last month I was lucky to attend one of the most splendid short workshops I’ve ever seen. Or it might be that I appreciated it so much because it was so timely, dovetailing with a project we’re just beginning but which I’m really excited about. The focus of the session, “Tell me a story: Designing narratives for health behavior change,” was on storytelling for health behavior change and was held at the University of Michigan School of Public Health.
It was a phenomenal gathering of speakers and thinkers on storytelling, leaving me inspired and almost over-charged with excitement. The presenters included professionals from the film, television, and comics industries, sharing personal experiences and best practices, then opening up with a dynamic and helpful question and answer session.
Here are the videos, which I’ve rearranged in the actual order of the presentations.
Here are the tweets, lightly edited for typos, links, minor fixes, and such.
pfanderson At @umsph for #storytelling Excited!!! (@ University of Michigan School of Public Health w/ @wnderingglutton) [pic]: http://t.co/29D8bGCx
KodyChamberlain RT @pfanderson: At @umsph for #storytelling Excited!!! (@ University of Michigan School of Public Health w/ @wnderingglutton) [pic]: http://t.co/29D8bGCx
pfanderson With @2020science at #storytelling “Tell me a story: Designing narratives for health behavior change” http://t.co/97evRSn2
KodyChamberlain About to present to tge University of Michigan School of Public Health #storytelling good crowd. http://t.co/XNvnebOu
pfanderson Presenters at #storytelling @KodyChamberlain @mikemosallam and @BestcatMonte Intros from Vic Strecher
pfanderson Tip fr @BestcatMonte “Never let someone else tell your story” #storytelling
pfanderson Tip from @KodyChamberlain “Always choose the image that happens a split SECOND after action.” #storytelling
MLibraryHealthy A story should be 4 things:engaging, understandable, memorable, and engaging. #storytelling
pfanderson #storytelling Stories should be: Engaging, Understandable, Memorable, Actionable @BestcatMonte 3 act structure for films http://t.co/fqqG0RYi
pfanderson RT @MLibraryHealthy: A story should be 4 things:engaging, understandable, memorable, and engaging. #storytelling
YMazloomdoost RT @pfanderson: With @2020science at #storytelling “Tell me a story: Designing narratives for health behavior change” http://t.co/97evRSn2
pfanderson Three acts as building of story arc & tension. Leveling the story. Wizard of Oz as example, Jerry McGuire. #storytelling.
YMazloomdoost Why is #publichealth always hard to communicate? b/c we’re trained as healers, not communicators & we’re always telling bad news #storytelling
pfanderson Watching Murray & Ava, a Love Story http://t.co/NMRvi57t as example of #healthcomm story arc at #storytelling
MLibraryHealthy RT @pfanderson: Watching Murray & Ava, a Love Story http://t.co/NMRvi57t as example of #healthcomm story arc at #storytelling
pfanderson “So, whaddya think? You wanna move?” “No. Leave me alone. Help someone else.” #storytelling
pfanderson “Virtual coaching sessions will not really include Ava. Sorry about that.” #storytelling
pfanderson HRA – Health Risk Assessment also using the “three-act” structure #storytelling
YMazloomdoost Stories should be: Engaging, Understandable, Memorable, Actionable. Write them simply and with a punch! #storytelling
MLibraryHealthy How long do you get to tell your story? Usually it’s decided for you. #storytelling
pfanderson Look for opportunities to use 3act structure, but don’t force content into it. #storytelling
MLibraryHealthy Is the three act structure relevant for all public hlth communications? No don’t force it, just look for opportunities 2 #use it. #storytelling
pfanderson Now up @mikemosallam for #storytelling UM Alum in musical theater
YMazloomdoost Stories have 3 acts that build on each other. Hint at things in act 1 for act 3- audienceâll feel like theyâre in on a secret =) #storytelling
pfanderson MM: “What is MY story?” Internet says top associations with the word “Arab” are terrorist, violent, bombers, etc. Hunh? #storytelling
pfanderson “Where I grew up Hassan & Jonathan played football together. The McDonald’s serve Hallal.” #storytelling
pfanderson “What if that was what I thought of myself?” Yep, that’s why I changed my name. #storytelling
pfanderson #storytelling “I went to grad school, because that’s what you do when you’re depressed.” @mikemosallam
MLibraryHealthy Mike Mosallam: Then I went to grad school cause that’s what you do when you’re depressed. #storytelling #truestory
pfanderson “Tell me about your experience after 9/11″ Grad advisor to Arab film grad student #storytelling
YMazloomdoost Lol, yup– I went to grad school because that’s what you do when you’re depressed. @mikemosallam #storytelling What’s your grad school story?
MLibraryHealthy RT @YMazloomdoost: Lol, yup– I went to grad school because that’s what you do when you’re depressed. @mikemosallam #storytelling What’s your grad school story?
pfanderson That question became “Muslim the Musical” http://t.co/cIbvD7l7 bridgebuilder gatekeeper boundarspanner @mikemosallam #storytelling
pfanderson Put a face to the experience, the Arab-American experience, the Arab-Muslim experience All American Muslim http://t.co/xDE0e6If #storytelling
YMazloomdoost Great point @mikemosallam: The reason why there’s so much stereotyping, it’s because we don’t put a face to “others”- humanize #storytelling
MLibraryHealthy Focus Group: Most critical response and most negativity was from the #Muslim community. These people do not represent me. #storytelling
MLibraryHealthy @mikemosallam Create your own story. The #road has been paved. #storytelling
YMazloomdoost @mikemosallam: Create your own story. Don’t let someone else write your narrative. #storytelling
pfanderson Q fr @KodyChamberlain Did telling yr story promote change? A: Dialog was certainly created, more questions were asked, answered #storytelling
TypeONEderful “Don’t let someone else define your narrative” @mikemosallam #storytelling
pfanderson First person narrative, even told badly, is often more powerful than 3rd person done well #storytelling Find the humanizing factor.
pfanderson “I chose people who had a built-in story. Newlyweds pregnant with first child. Football team of Muslim players during Ramadan.” #storytelling
pfanderson #storytelling @mikemosallam quotes Gandhi “Be the change you want to see in the world”
YMazloomdoost RT @pfanderson: First person narrative, even told badly, is often more powerful than 3rd person done well #storytelling Find the humanizing factor.
TypeONEderful RT @YMazloomdoost: Stories should be: Engaging, Understandable, Memorable, Actionable. Write them simply and with a punch! #storytelling
pfanderson Q: What abt privacy in real stories? A: @bestcatmonte lawyers’ll tell U what 2 do. U have 2fight them every step of the way #storytelling
MLibraryHealthy Film making is lying in the service of a #greater truth. #storytelling
pfanderson #storytelling @mikemosallam “Let the subject direct the narrative” @bestcatmonte “Filmmaking is lying in the service of a greater truth”
MLibraryHealthy RT @pfanderson: #storytelling @mikemosallam “Let the subject direct the narrative” @bestcatmonte “Filmmaking is lying in the service of a greater truth”
pfanderson RT @TypeONEderful: “Don’t let someone else define your narrative” @mikemosallam #storytelling
pfanderson Now up #storytelling @KodyChamberlain full time artist. Sits quietly in his studio for hours at a time
MLibraryHealthy @KodyChamberlain impressive list of credits: Warner Bros, Dark Horse, Marvel, etc. #storytelling
pfanderson Young reader adaptation of Beowulf @KodyChamberlain #storytelling Yay! He’s also Cajun. #storytelling
pfanderson So excited that @KobyChamberlain is from Lafayette. So much of my family there and in Eunice. #storytelling
MLibraryHealthy @kodychamberlain #AWESOME set of Indiana Jones cards! #storytelling
MLibraryHealthy @kodychamberlain If you’re anything like me you are wondering why would Ronnie from Jersey Shore need a desk. #storytelling #hairgelstorage?
pfanderson <3 New Orleans fiction. Check out Sweets by @KodyChamberlain http://t.co/C5o4n2sz #storytelling
TypeONEderful “One of the things I love about creating comics is finding a new audience” @kodychamberlain #storytelling
MLibraryHealthy Go to MTV Comics and search #Punks. #storytelling
MLibraryHealthy RT @TypeONEderful: “One of the things I love about creating comics is finding a new audience” @kodychamberlain #storytelling
YMazloomdoost Just learned- conceptual art/drawing storyboard for scripts to work out visuals before u start filming w/actors @kodychamberlain #storytelling
pfanderson Interesting. Kody talks about photo collage techniques for non-artists working in comics #storytelling Outline > index cards. Screenplay format
pfanderson Reseller market for original artwork sold to fans #storytelling. Ink on top of pencil, erase pencil #storytelling
pfanderson “When you catch a butterfly, stop swinging the net” @KodyChamberlain at #storytelling
MLibraryHealthy “When you catch a butterfly, stop swinging the net”. #storytelling
pfanderson There’s a difference between creativity (the idea generation) and the process of making #storytelling
YMazloomdoost When do you know it’s done? When you catch a butterfly, stop swinging the net. (Stop when the project’s working) @kodychamberlain #storytelling
pfanderson Sequential art: Scene 1, scene two, your mind fills in the egg or person falling #storytelling
MLibraryHealthy #Sequential art. Our minds fill in the space. @kodychamberlain #storytelling
TypeONEderful Sequential art is a powerful tool that is underutilized. Your mind fills in the gaps with all these ideas #storytelling
pfanderson Cave art as the first recording comic in history. Next the Egyptian pictograms #storytelling Logos became symbols, symbols became letters
YMazloomdoost @KodyChamberlain: Our memories add context (fills in gaps) for sequential art. Just like it does for symbols. #storytelling
pfanderson Comics in daily life are for life and death situations, Heimlich maneuver instructions don’t really work in written words #storytelling
pfanderson @ssieg I volunteered to do a comic tool session for #es13 Thinking I might have gotten myself in over my head #storytelling
MLibraryHealthy Comics are an efficient way to teach important concepts e.g. #heimlich maneuver @kodychamberlain #storytelling
TypeONEderful sequential art can provide instant understanding of complex ideas #storytelling
pfanderson I have got to find the comic on peeling a crawfish to show my mama & daughter @kodyChamberlain #storytelling
pfanderson I used to have a corkwall. Have been REALLY missing it in my nice plasterwalled house #storytelling
pfanderson “Sketching is not a gift. It is a process.” #storytelling
pfanderson RT @TypeONEderful: sequential art can provide instant understanding of complex ideas #storytelling
MLibraryHealthy RT @pfanderson: “Sketching is not a gift. It is a process.” #storytelling
pfanderson RT @MLibraryHealthy: Comics are an efficient way to teach important concepts e.g. #heimlich maneuver @kodychamberlain #storytelling
rubymoons RT @pfanderson: “Sketching is not a gift. It is a process.” #storytelling
pfanderson “Professionals rarely show their early work Bcuz it’s often terrible. The result is the assumption they create w/o it. Not true” #storytelling
rubymoons RT @YMazloomdoost: Stories should be: Engaging, Understandable, Memorable, Actionable. Write them simply and with a punch! #storytelling
rubymoons RT @TypeONEderful: “Don’t let someone else define your narrative” @mikemosallam #storytelling
pfanderson “Sketching is not about good drawing. It’s about good thinking.” #storytelling
MLibraryHealthy Might be 30 pages of #junk until I get that 1 image. @kodychamberlain #storytelling
YMazloomdoost KC: Professionals rarely show their early work; it’s often terrible. Result: assumption they create it w/o it. That’s not true. #storytelling
pfanderson “Bad sketches by brilliant creators” Hitchcock, Spielberg, Scorcese. And so what? Storyboards actually match film “on point” #storytelling
pfanderson RT @MLibraryHealthy: Might be 30 pages of #junk until I get that 1 image. @kodychamberlain #storytelling
32_Boards When @Lightskin04 @EazyB_3 @iBelieveN5 and i get together. #storytelling
pfanderson If idea is good, execution can come later. Dig into patent drawings for some really bad but clear drawings #storytelling
pfanderson Edison: “Make good drawing” added note to early sketches #storytelling
pfanderson Saul Bass as brilliant logo designer, storyboarded the shower scene in Psycho #storytelling
MLibraryHealthy Pop Culture Philosophy: Bob Ross, The #Happy #Accident. #storytelling
pfanderson #storytelling Popculture lessons. Bob Ross. Happy accident. “Wet on wet.” Use the mistake to inspire something new.
TypeONEderful Bob Ross’s “happy accident”, using an accident to create something new that you may not have thought of before #storytelling
pfanderson “Computers don’t make mistakes. (unless you include crashes)” #storytelling Pixar’s Renderfarm http://t.co/982dNQBR
Lightskin04 RT @32_Boards: When @Lightskin04 @EazyB_3 @iBelieveN5 and i get together. #storytelling
pfanderson We NEED mistakes & random things to happen in the early stages of develop concepts #storytelling
YMazloomdoost RT @TypeONEderful: Bob Ross’s “happy accident”, using an accident to create something new that you may not have thought of before #storytelling
MLibraryHealthy Pop-Culture Philosophy: Computers don’t make mistakes. But, #Pixar still storyboards despite the technology. #storytelling
TypeONEderful “We want mistakes to happen in the creative process, great ideas are born from that” @KodyChamberlain #storytelling
pfanderson RT @TypeONEderful: Bob Ross’s “happy accident”, using an accident to create something new that you may not have thought of before #storytelling
ReginaHolliday RT @TypeONEderful: Bob Ross’s “happy accident”, using an accident to create something new that you may not have thought of before #storytelling
pfanderson #storytelling @KobyChamberlain uses Bruce Lee philosophies “Be water, my friend” “Use what works”
pfanderson QUOTE: @KobyChamberlain Inspiration is a placebo. The feather was a placebo (Dumbo). #storytelling
YMazloomdoost Inspiration is a placebo. You don’t need it to create. @KodyChamberlain #storytelling “Inspiration is for amateurs”-Chuck Close
pfanderson Chuck Close “Inspiration is for amateurs” @KodyChamberlain #storytelling
pfanderson Darn it! I’ve been mistyping Kody’s name as Koby. Grrr #storytelling “Increase yr capacity before you hunt the shark” ???
pfanderson @strnglibrarian @lorireed #storytelling is a workshop on using storytelling to create health behavior change
MLibraryHealthy Make sure your capacity is big enough before you do the thing you need to do. @kodychamberlain #storytelling
pfanderson Drink and Draw clubs http://t.co/vCXT8G6i @KodyChamberlain #storytelling
TypeONEderful RT @YMazloomdoost: Inspiration is a placebo. You don’t need it to create. @KodyChamberlain #storytelling “Inspiration is for amateurs”-Chuck Close
pfanderson @strnglibrarian @lorireed Yes, at @UMich #umich School of Public Health #storytelling
pfanderson Thinktanks!!! #storytelling Social networking for artists @KodyChamberlain
pfanderson Times when people telling their own stories … that’s what works. #storytelling
MLibraryHealthy There is just something about someone telling their own story that works #storytelling
pfanderson Take the real original story, then carve out the parts with power to tell the story @bestcatmonte #storytelling
rivenhomewood RT @pfanderson: Take the real original story, then carve out the parts with power to tell the story @bestcatmonte #storytelling
pfanderson “A project I’m drawing can be empty because there’s no passion. That changes when everyone gets involved.” @KodyChamberlain #storytelling
pfanderson “Just because you have a great story doesn’t mean you can tell it.” @BestcatMonte #storytelling
pfanderson Assessing your audience can balance drive toward authenticity if unsure #storytelling Talking about actors as patients
MLibraryHealthy Know the objectives of your audience. E.g. Playing a patient, interesting to know which doctors I would never go to. #storytelling
fastfwdhealth RT @pfanderson: With @2020science at #storytelling “Tell me a story: Designing narratives for health behavior change” http://t.co/wPnQC14i
pfanderson Vic Strecher on Veterans as source of powerful stories for comic artists, storyteller as midwife of story #storytelling Trauma narratives
rubymoons RT @pfanderson: Assessing your audience can balance drive toward authenticity if unsure #storytelling Talking about actors as patients
MLibraryHealthy Now, how to make things #actionable…#storytelling
pfanderson RT @MLibraryHealthy: Now, how to make things #actionable…#storytelling
MLibraryHealthy Strecher: A lot of artists are unemployed during a piece of time. Almost every artist I’ve ever met has wanted to do good things #storytelling
pfanderson Someone asked my question – how to do things on the cheap. Vic says he just asks. Uh, yeah, sure. #storytelling
rivenhomewood RT @pfanderson: “Sketching is not about good drawing. It’s about good thinking.” #storytelling
pfanderson Teaching in front of 300 kids. “Gee, it sucks to be here” vs “INSPIRED!” #storytelling
MLibraryHealthy Mike: What do you want to do?…working on lecture slides with a comic book artist #storytelling
pfanderson RT @MLibraryHealthy: Mike: What do you want to do?…working on lecture slides with a comic book artist #storytelling
ElinSilveous Can Buckeyes follow along #storytelling ? It sounds/looks so interesting…
pfanderson Recommendation? Ask the students and departments, engage locals with talent #storytelling
MLibraryHealthy You have great ideas, now how do you implement those ideas? This is where most people stop, but keep it simple. #storytelling
pfanderson @ElinSilveous Livetweets are open! And I think they are recording it. Hopefully later? #storytelling
MLibraryHealthy Immerse yourself before #networking. #storytelling
pfanderson Immerse yourself in comic art B4 you start. That’s what Vic Strecher did #storytelling @KodyChamberlain says he overcommits to force deadlines
MLibraryHealthy @Marissa_M_ #storytelling is part of a Symposium today http://t.co/BOxbPEWw
rivenhomewood RT @pfanderson: Young reader adaptation of Beowulf @KodyChamberlain #storytelling Yay! He’s also Cajun. #storytelling
MLibraryHealthy RT @pfanderson: Immerse yourself in comic art B4 you start. That’s what Vic Strecher did #storytelling @KodyChamberlain says he overcommits to force deadlines
pfanderson “We all have ideas that are fleeting. But the ideas that STICK … ” @mikemosallam #storytelling All Artists overcommit. It comes from passion
YMazloomdoost RT @MLibraryHealthy: Comics are an efficient way to teach important concepts e.g. #heimlich maneuver @kodychamberlain #storytelling
ElinSilveous Cool. Thank you! RT @pfanderson Livetweets are open! And I think they are recording it. Hopefully later? #storytelling
pfanderson Dr: Myths of healthcare. Blaming the victim. “two pounds overweight” Propaganda counter w/ art. #storytelling
MLibraryHealthy First thing to ask yourself, “Is there a story in it?” #storytelling
pfanderson Instead of taking on the world, think of ONE person who has this problem. Tell THAT story. #storytelling @BestcatMonte
pfanderson RT @MLibraryHealthy: First thing to ask yourself, “Is there a story in it?” #storytelling
MLibraryHealthy RT @pfanderson: Instead of taking on the world, think of ONE person who has this problem. Tell THAT story. #storytelling @BestcatMonte
pfanderson Tips for converting 3d to 2d through photography & lighting positioning #storytelling
MLibraryHealthy Technical questions: Scanner or photos used to transfer drawing to computers. Have to use photos for work with depth. #storytelling
MLibraryHealthy @Kodychamberlain Approach instructors to find artists. #storytelling
MLibraryHealthy World-Class Storytellers Symposium was #great! Check out #storytelling for more info!
Since part of the conversation with Jack about open access took place within a fast-paced Twitter chat, and part with other people outside of the hashtag, it took some time to paste it all together in sequence. What I ended up with is strict chronological order simply because the conversation was so complicated and interwoven, it was difficult to maintain continuity in any other way. Even if it made part of the conversation more clear, it tended to make the overall conversation more confusing. You have to realize that often these tweets were flying across the wires at the same time, crossing in passing, and that parts of the conversation overlap. As always with Twitter, each communication was limited to 140 characters, meaning that ideas and concepts had to be abbreviated substantially. I hope this works, because Jack made many very important observations illustrating the hidden costs of paywalls.
@plosRT @pfanderson: Example of day is @jackandraka‘s discovery of new lowcost cancer diagnostic. Depended on content w/o paywals #hcsm
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.
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.
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.
“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.”
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.”
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.
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.
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?”
I am writing this on Thursday, February 28. If no action is taken, sequestration will be in effect as of midnight. What does that mean for STEM (science, technology, engineering, math) research in the United States? I decided to go to Twitter to see what researchers and scientists were saying.
I searched #sequester and research so I could narrow my results and weed out a majority of the political chest-thumping. From there, I found the hashtag #sciquester and that was where the action was. There were quite a few tweets about what the sequester means for research institutions as well as current and prospective NIH/NSF grantees:
If congress doesn’t do something before Friday, basic science in this country comes to a screeching halt. nsf.gov/pubs/2013/in13…#sciquester
And there were a plethora of tweets urging everyone to advocate to their communities and government officials to do whatever they can to stop the sequestration before today.
Congress may end up intervening in the 11th hour. This post may seem silly in the morning. It may be that we avoid sequestration this time, but that doesn’t mean the advocacy and support for science and research should end. If we don’t make our voices heard, we can’t effect change.
If Academia had Elsevier’s lobbyists, there would be no #sciquester.
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.)
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.
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.
“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.
“About 10% of the American population is directly effected by rare diseases” #rdd#rdd13
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?
We are to healthcare what amateur astronomers have always been to the cosmos. We’re going to make discoveries docs use.
Then a reader of this blog sent me a message asking me to blog more about this issue. That’s hard. I had to think about it a while, and have been working on various drafts of this post ever since. What I came up with is connecting Aaron’s mission and open access to what we gain, both potentially and actually, from making content available to other youth. This is because I had a very interesting conversation on Twitter Sunday evening with Jack Andraka, as part of the broader Health Care Social Media chat (#HCSM). If you don’t know Jack, read on. But first, a bit more about Aaron.
The HCSM chat started with an extremely active and powerful conversation about paywalls. Paywalls means, in this case, a situation where information or content that you want or need is unavailable to you until you pay money for it. Basically, the information is held hostage. This is not always a bad thing, and sometimes can actually increase safety of the audience, depending on what the content is. When it becomes questionable is when the content is educational, when the information is needed for the progress of helpful science or clinical care, is needed for safety of a community, is being used to shape policy or law that will impact on a community, comes from research paid for with public funds, or related uses and situations. There are many important conversations going on around use about when is it ethically appropriate to restrict access to information, for whom, for what types of information, and under what circumstances. Aaron Swartz had very strong opinions on this, which is ultimately what triggered the chain of events leading to his demise. Here is a small part of what Aaron had to say about this.
“Those with access to these resources — students, librarians, scientists — you have been given a privilege. You get to feed at this banquet of knowledge while the rest of the world is locked out. But you need not — indeed, morally, you cannot — keep this privilege for yourselves. You have a duty to share it with the world. And you have: trading passwords with colleagues, filling download requests for friends.”
Please note that the behaviors he describes — trading passwords, and filling download requests for friends — are illegal based upon the contracts signed by our institutions and libraries with the publishers of the journals and electronic resources. Aaron’s argument was that those contracts were unethical. Beyond unethical, actually, in that the lack of access to critical information is ultimately destructive to the entire human race and the survival of the species, in that this lack delays and prevents needed discoveries, solutions to the problems that threaten the species and life on this world. A broad scope for the argument, but there is substance to it. Yes, there are problems with simply making all information available to anyone, but there are also solutions for many of those problems and refinements to the who/what/what/when/why/how questions information access. Those are things we can work out.
For today, I want to let you see part of the story Jack Andraka shared with us last Sunday, about how paywalls impacted on his research. Here’s the conversation, which I have taken the liberty of embroidering with a few resources and links and videos (and there are a LOT more where these came from, especially the videos). To start with, WHO is Jack Andraka?
Jack is 16 years old. Jack was at the State of the Union address as the guest of President Obama. Why? Because Jack has developed a new test for diagnosing pancreatic cancer, a test that is more accurate (~100%) and faster (168x), and cheaper than anything we already have (26,000x, yes, really). This is critical simply because, as with so many other cancers, early diagnosis improves survival, DRASTICALLY. (Hey, Jack? Next time, look at ovarian cancer, please. KThxBai. Oh, wait. The test you already developed might work. Oh, and lung cancer, too? Awesome!)
Jack will be the first one to tell you he could not have done this without open access research articles. And he’ll also tell you about all the barriers and struggles he had when the information he needed wasn’t available in open access journals. So, there we get to the question of open access. Time for Jack to speak for himself. And that will happen in part two of this post.
The Horizon Report, briefly, identifies emerging educational technologies influencing the scope and practice of higher education, placing them along a 6 year timeline moving towards adoption. The report comes out each year, and names what they have identified as the two most important new technologies for immediate adoption, near term adoption, and 5-6 years out.
This year, the technologies that have been identified as important for education are these:
Immediate (1-2 years):
– MOOCs
– Tablet Computing
Near term (3-4 years):
– Big data
– Learning analytics
– Game-based learning
Long term (5-6 years):
– 3D Printing
– Wearable Technology
I always track the Horizon Report closely, and have done so formally every since I became an Emerging Technologies Librarian. For the past several years, we discussed it as part of the ongoing local Cool Toys Conversations group, and this year we are extending that conversation.
What we are doing is this.
1) Last month, the Cool Toys group discussed the preview report and the six identified technologies. We took a look at them explicitly within the context of our institution, the University of Michigan, and what is going on already for our campus with these new technologies. This included courses, opportunities, and campus resources.
2) Today the Cool Toys group (#CoolToys) is revisiting the topic with the final Horizon Report, which was recently released. We will be looking at the examples that have been included of what other campuses are doing, expecting to be informed and inspired.
3) The Medical Librarians Twitter Chat (#MedLibs) will be discussing the Horizon Report on Thursday evening, February 28, at 9pm EST. MedLibs will be looking at how these learning technologies could impact on the practice of medical librarianship through:
– changing approaches to health literacy;
– personal learning opportunities and continuing education;
– impacts in healthcare provision & the e-patient & personalized medicine movements;
– and other ideas as they arise.
I’ve been tracking the conversations so far in this mindmap, which will continue to grow as the conversations continue through the week.
@KodyChamberlain #storytelling Yay! He’s also Cajun. #storytelling
#storytelling
