Category Archives: Health, Healthcare, Support, Science

A Tack Board of Tags (HOTW July 19, 2015)

There have been some fantastic conversations on Twitter this week, on a huge diversity of topics and organized around some intriguing hashtags. I was personally involved with the Summit for the Mayo Clinic Center for Social Media (#MCCSM) and the local systematic review training course (UMTHLSysRev). It was a series of happy coincidences that led me to the events Astrobiology Science Conference 2015 (#AbSciCon); Inspirefest 2015, the future of science, technology, engineering, and mathematics with new perspectives on innovation, leadership and success (#inspirefest2015); and International Association for Suicide Prevention (#IASP2015). I was surprised to find two very relevant Twitter chats that were new to me: hereditary cancer chat (#hcchat) and the Internet of Things chat (#IoTchat). Last but far from least, the nursing-inspired #WhyWeDoResearch tag is a very motiving and inspiring meme to explore. I’ll put just a few examples of each below, hoping to intrigue you enough to go look at these yourself.



Mayo Clinic Center for Social Media | #MCCSM (#mccsm archive)



Systematic Reviews Workshop: Opportunities for Librarians |
#umthlsysrev (#umthlsysrev archive)



Astrobiology Science Conference 2015 | #AbSciCon



Inspirefest | #inspirefest2015



28th World Congress of the International Association for Suicide Prevention, Montreal, 2015 | #IASP2015 (#IASP2015 archive)



Hereditary Cancer Chat #HCchat
(#HCchat archive)



#IoTChat: Internet of Things Twittersphere Chats Evolve | #IoTchat



Why We Do Research Campaign (Weebly sites blocked in UM hospitals) [Campaign video 1; campaign video 2] | #WhyWeDoResearch (#WhyWeDoResearch archive)

La Traviata: Turning Old Pop Culture Into New Pop Culture to Fight Stigma

Pic of the day - Detroit Opera House

Only old fogies go to the opera, right? And young guys trying to impress a girl with how intelligent and posh they are. Right? And why? Because it’s booooooring, and not relevant, unless you study music. Or history. Or music history. Or the Looney Tunes. Right?

Well, do I have news for you. The Metropolitan Opera has gone international with their Live in HD series show in movie theaters, and they are including famous Tony award winning directors and Broadway actors in some of the shows. Professional opera has been trying to recruit a new audience through reaching out into new spaces, and re-interpreting shows in modern scenarios, like the Las Vega “Rat Pack” version of Rigoletto or the 50s diner version of Cosi Fan Tutti, or even the Star Trek version of “Abduction from the Seraglio.” I know of classic operas with new translations of the libretto, but they keep the same plotline and story. Of course, there are also new operas, new approaches to what is an opera, rock operas, heavy metal operas and even a country-western-horror mashup opera.

As far as I know, no one has, however, taken this as far as the Arbor Opera Theater did last week with their new interpretation of La Traviata.

La Traviata

La Traviata. Postcard image courtesy of NNDC.

“Lydia Mendelssohn Theatre, June 11-14, 2015. La Traviata, a new English adaptation created with the National Network of Depression Centers to address the stigma surrounding mental illness.”

Ah, now it makes sense. I bet some of you were wondering why on earth I was talking about opera, when I usually talk about healthcare and/or technology. This is why. (Well, except, I do love opera, in case you haven’t guessed.) The best operas have traditionally taken on difficult and edgy topics, challenged assumptions and cultural norms, poked ridicule at the establishment, and generally done what popular culture does best: Explore, question, and hopefully transform the present. La Traviata, when it was first written, told the story of bias against women of “ill-repute,” a.k.a. courtesans or prostitutes. The rumor is that Verdi had his own personal reasons ( special friend, perhaps) for suggesting that people should be a bit more tolerant, and trying to foster a sense of compassion to counter the stigma. This brought us La Traviata, and generations of viewers who weep at the end as the “courtesan with a heart of gold” fails to survive largely due to the classic public health indicators of low socioeconomic status and lack of access to healthcare. Stigma of all sorts is a contributing public health issue, with over twelve THOUSAND articles on the topic in MEDLINE. Almost half of those relate directly to mental health or mental illness, and the rest mostly connect tangentially, through sexual preference, victim status or survivorship, gender identity, and disease diagnosis status (HIV, cancer, leprosy, and more).

This new and revised vision of La Traviata kept the wonderful music, the names of some of the characters, and the stigma, but changed the plot and storyline and the source of the stigma. The star of the new La Traviata remains Violetta, but now Violetta suffers from mental illness. Violetta is a beautiful young woman, self-medicating in a struggle to manage her symptoms, without her friends realizing that it is an illness and could be treated. As with so many in real life who struggle to alleviate their own misery without understanding the root cause, her strategies for self-medication complicate the challenges instead of helping. Those familiar with the story of La Traviata know to expect a death scene at the end, but our Violetta dies not of tuberculosis and poverty, but misunderstanding and a drug overdose.

La Traviata Death Scene

La Traviata Death Scene, photo courtesy of Amanda Sullivan

When I first heard about this production, the vision of interpreting the story around depression and bipolar and stigma, actually partnering with the National Network of Depression Centers, I could not have been more excited. I was thrilled with the concept, and could only wait to see the show because there were no previews online! Not everyone felt the way I did. At the performance, I overheard people expressing some reluctance. Would it be the show that they loved already? How could this work? Did it really make sense to make this big of a change? At the first intermission, some were still hesitant, but by the final intermission the staunchest resistance near me had converted to, “I’m surprised! This really works!”

It did, and does succeed as a story. Arbor Opera Theater is not the Lyric or the Met. We don’t have the star performers, the grand sets, the enormous stage. Despite that, I found myself lost in the story and music. The New Orleans setting was a perfect choice for the context of the story. The sex scenes were dynamic enough to make me feel like a voyeur. Several audience members commented on the strong performance by Augustin (Drake Dantzler) as Violetta’s youthful true love. The arguments with her lover’s father, Senator Germont (Evan Brummel, who acts brilliantly as well as beautifully sculpting language with the musical notes), successfully portrayed him with rich subtlety as a villain operating from the best of intentions. People near me said, “I could have done the same thing,” and “I know parents like that.” His repentance at the end, in the dream sequence, made me wish it was not a dream. When the final scene approached, my reaction was, “Oh, no! She’s so tiny, she doesn’t have the body mass to offset the meds!” I had willingly suspended disbelief, and bought into the performance. A part of me believed that Violetta (Kacey Cardin) was the tiny, sexy, blonde woman with the big voice, tough and fragile at the same time.

La Traviata - Full Cast

La Traviata, Cast, photo courtesy of Amanda Sullivan

The actual singing soared, and for the most part the libretto succeeded in both revealing the story and supporting the singers. There were a few rough spots in the libretto that didn’t quite lay well for the voices and which were jarring to the audience, disrupting the flow of the story. Perhaps a bit of polish, a touch more lyricism, and a bit of rhyme and poetry would address that? Portions of the libretto seemed appropriate for the story, but inappropriate for the character actually singing them. I’d want to touch base with a greater variety of audience members to test out how it worked. That there were moments where the language was a distraction from the story was made evident in audience comments in the hallway. “What does that word even mean?” “Did she have to use that kind of language?” Perhaps that was just the older portion of the crowd? I’m not sure. Perhaps I’m just nitpicking.

Ultimately, I came away wishing strongly to see this performed over and over again, in many interpretations, in many theaters. I want to see this performed by the Met Opera in their Live in HD series. I want to take the train to Chicago to see it at the Lyric. I am deeply grateful to have overheard one of the cameramen at the Saturday performance say that there were plans for this La Traviata to be broadcast on Detroit Public Television in the future. I hope desperately that this means it will also be viewable online, because I want to go out to all my online healthcare communities and get people to watch it, or at least watch excerpts and highlights. I want to spread the word, and engage a much broader audience around this issue, stigma, and this story.

I also found myself asking, why don’t we do this for other important health care and social advocacy stories? Can we take what Shawn McDonald has done with La Traviata as a model to explore contemporary issues? Take classic operas, plays, perhaps Shakespeare, and more. Make them modern and relevant to a contemporary audience, give them new life, and at the same time support the important causes and issues of our day, the challenges and heartaches that shape our society. It would be a far lesser shift to perhaps have Violetta dying of cancer. Could King Lear be rewritten to explore workplace social dynamics, and the need for positive organizational dynamics? What about a new work taking David Copperfield and setting it in India or China? Could Ophelia in Hamlet be recovering from the trauma of clitoridectomy? Rewrite Figaro as casting couch dynamics in Hollywood. Would it be possible to mashup Handel’s Orlando with Virginia Woolf’s surreal Orlando to explore transgendered life? In Rigoletto, instead of being a hunchback, could Triboulet be a person with facial difference? Take L’Elisir d’Amore and rewrite it as a vaccine story. The possibilities are endless.

After the exhilaration and emotional roller coaster of watching the AOT La Traviata Saturday night, I came home and walked the dog. It was dark. The streets were empty. There was a hollowness in the silence that seemed to echo louder because of where I’d been so recently. It felt … appropriate. Let Violetta’s death, the real Violettas of our world, have meaning. Let us move from these hollow spaces to open spaces that show stigma for what it really is.

After a sad opera


Update June 18, 2015: Corrected the name of AOT from Ann Arbor Opera Theater to Arbor Opera Theater. Corrected attribution of images from NNDC to Amanda Sullivan.

What Patients Think About Clinical Trials, Take 2 (#bioethx)

At the Doctor's Office: Push For Help

ADDENDUM

Within minutes after the previous post went live, I was contacted on Twitter by another patient advocate, Willow, also known as Serious Skeptic. She* expressed another wide area of patient concerns about clinical trials, ones that were new to me, and which deserve representation in this post, even if they aren’t from the official public #PatientChat event. Because Willow has a locked account, and I respect that, I asked her permission to share the links and the essence of some of her private tweets. The following is posted with her consent, but represents my words and distillation of what I learned from her.

Willow was concerned about ethical breaches in clinical trials, especially:
– trials that are designed specifically to promote use of a drug (marketing);
– trials that suppress undesired findings or which fail to publish or share negative findings;
– trials that don’t share their data;
– trials that don’t make relevant or useful findings available to all trial participants.

I had the impression she’d kind of like the research studies to also notify trial participants of publications that do result from their participation. I know, I do, myself, and being a medical librarian, I take notes on my research participation, the names of studies, the names of the PI, and I stalk their publications for years until I see the research in which I participated. I often ask to be alerted, and usually received some sort of polite demurral, and nothing else. I wish they had an email list I could just subscribe to for alerts from their lab.

Anyway, when Willow described clinical trials that are actually marketing ruses, my reaction was, “Whoa! Not really? Doesn’t the IRB process protect against that?” Evidently not. The concept she was describing most is called seeding trials. Here are some links she shared with me, or quotes and/or resources from those articles.


A physician is invited by a pharmaceutical company to take part in a study involving an FDA-approved drug. The physician’s responsibilities entail prescribing the drug for patients and then completing three questionnaires about each patient’s experience with the drug. The questionnaires are quite short and will take about 20 minutes each to complete. The sponsor will pay $1,500 for each completed questionnaire. The physician is very interested in participating because it looks like a great way to increase practice revenues.

Rusczek JP, Rusczek AM. Fraud and Abuse in Clinical Research: Three Case Studies. ABA Health eSource June 2010 6(10). American Bar Association. http://www.americanbar.org/content/newsletter/publications/aba_health_esource_home/Rusczek.html
– Research Involving Non-Employed Physician Investigators
– Marketing Disguised as Research
– Double Billing

The public has lacked convincing documentary evidence of a long-suspected drug company practice: promoting a new drug by sponsoring a randomized trial in which participating physicians use the drug as they follow the trial protocol. This practice—a seeding trial—is marketing in the guise of science. The apparent purpose is to test a hypothesis. The true purpose is to get physicians in the habit of prescribing a new drug.

Sox HC. Seeding Trials: Just Say “No.” Ann Intern Med. 2008;149(4):279-280. doi:10.7326/0003-4819-149-4-200808190-00012 http://annals.org/article.aspx?articleid=742309

Seeding trials are designed to appear as if they answer a scientific question but primarily fulfill marketing objectives. Kessler and colleagues (3) portrayed seeding trials as “attempts to entice doctors to prescribe a new drug being marketed by the company” while the company puts its product in the hands of practicing physicians, hoping that the experience of treating patients with the study drug and a pleasant, even profitable, interaction with the company will result in more loyal physicians who prescribe the drug (4).

Hill KP, Ross JS, Egilman DS, Krumholz HM. The ADVANTAGE Seeding Trial: A Review of Internal Documents. Ann Intern Med. 2008;149:251-258. https://www.leg.bc.ca/cmt/39thparl/session-4/health/submissions/Hill_The_Advantage_Seeding_Trial_2008.pdf

“Merck’s marketing division handled both the scientific and the marketing data, including collection, analysis, and dissemination; and Merck hid the marketing nature of the trial from participants, physician investigators, and institutional review board members.”

Keim B. Merck Vioxx Study Disguised Marketing as Science. Wired 08.19.08 1:22 PM. http://www.wired.com/2008/08/merck-vioxx-stu/

Merck minimized the true risks of Vioxx (Apr 17, 2008) https://www.youtube.com/watch?v=PQYxZSUDnqI

The maker of Neurontin disguised an effort to promote the anti-seizure drug to physicians as a clinical trial and failed to inform involved physicians and patients, according to a new analysis published Monday in the Archives of Internal Medicine journal.

Girion L. Neurontin study was a sham designed to boost drug sales, researchers say in medical journal. Los Angeles Times June 27, 2011. http://articles.latimes.com/2011/jun/27/news/la-heb-neuronton-seeding-trial-20110627

Seeding trials are an unethical, dangerous way to market a product. The IRB needs to become a better-equipped committee that can identify seeding trial practices from honest clinical trials, and the FDA needs to demand more transparency from companies sponsoring clinical trials, to better protect public health and the integrity of clinical research.

Varga M. Are Seeding Trials Ethical? Kulkarni Law Firm Blog June 11, 2012 11:11. https://www.conformlaw.com/blog/are-seeding-trials-ethical/

Recommended Principles to Guide Academy-Industry Relationships. American Association of University Professors. University of Illinois Press, Jan 25, 2014. See the endnotes on pages 341-2. https://books.google.com/books?id=lFSNAgAAQBAJ&pg=PA341&lpg=PA341&dq=drug+seeding+trials&source=bl&ots=AEZ1Xa7NUS&sig=W_nCm_h2w7Uhtf5tWd4V6sf5ggI&hl=en&sa=X&ved=0CDIQ6AEwAzgeahUKEwjw9JWVyovGAhWjWowKHTvgAJQ#v=onepage&q=drug%20seeding%20trials&f=false


Because of the risks and distrust generated by the practice of seeding trials, Willow suggested that it might be wiser to wait to test new meds on your own body until they’ve been out for a few years, unless you are so ill that you have no alternatives. Now, of course, if everyone does that, then there are NO NEW DRUGS because we can’t test them! And that is a situation in which we all lose.

My own choices? I take risks that I won’t ask others to take. I try to be informed about the risks I take. When I participate in a research study, I ask a lot of questions, and I pay very close attention to my body. If my canary-in-the-mine body complains, I withdraw from the study. Well, I would. So far, I’ve never actually needed to withdraw from a research study, but I have ceased taking actual FDA-approved meds prescribed for me that my body couldn’t handle. I’m hoping that the #bioethx chat group will pick up on this topic next, and hoping they can find an invited speaker to talk about what IRB committees have done and are doing to try to address this, to build confidence in medical research.


* I am assuming Willow is a she because I interpret the name Willow as a female name. I have no knowledge or confirmation of that, and it isn’t any of my business anyway. I am using the female pronoun to describe her simply for convenience, and intend no disrespect.


ADDENDUM TWO, June 13

A few clarifications and corrections from the ever thoughtful Willow.

Willow feels my concern about limiting drug discovery isn’t valid, since seeding trial occur for drugs that are already patented. My concern is that fear of seeding trials will scare some participants off of drug trials entirely. Drug discovery trials are legitimate, but the problem remains that it can be difficult to distinguish discovery trials from seeding trials, since the physicians and patients are both kept in the dark by the drug manufacturers.

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.

Ann McKee on Boxing, Football, and the Brain (Leiter Lecture) [#mlanet15]

Part 4 of a series of blogposts I wrote for the recent Annual Meeting of the Medical Library Association.


Was it just yesterday? I was sitting in the Leiter Lecture listening to the incredible Dr. Ann McKee present about past, present, and future trends in concussion research. I had been reading about her work in the indie-published award-winning book from 2014, Conquering Concussion, and was very interested in learning more. By the end of the talk, I wasn’t the only person who had tweeted out that I had tears in my eyes.

The story she told that touched me the most was of the athlete who had been diagnosed with ALS, but who phoned her, suspecting that what he really had was, “what you’re studying, Doc.” That would be Chronic Traumatic Encephalopathy (CTE). Basically, CTE is what happens when you bounce someone’s brain around on a regular basis, and they never really have a chance to heal. Some folk with that history develop CTE, some don’t, and Dr. McKee would really like to know why. To do this research, people or families donate their brains after they die. This athlete had met with her a few times, and there was a relationship, a sense of trust between them. Then the call came (I’m paraphrasing here, working from memory), “Hey, Doc, we’re having a big party! All my family and friends, a big blast. I’ve decided to go off respiratory support, and my docs don’t think I’ll make it through the weekend.” He died the next day. Someone went to pick up his brain, and when they ran the tests, he was right — he did have CTE.

I shared that story later that day in the airport waiting room with a man whose wife and son both had a history of severe concussions. I also shared that Dr. McKee’s insights on a possible genetic connection (for why some folk never develop CTE) and what people can do NOW to help prevent the long term:

* EXERCISE
* Diet (rich in antioxidants)
* Sleep
* Avoid conditions or triggers that cause inflammation in your body

Dr. McKee is also working on finding biomarkers so CTE can be diagnosed before people die, and needs donations of NORMAL brains to be able to identify the differences. A friend of mine asked me on Twitter what qualifies as ‘normal,’ and for this, let’s just say it would be someone who doesn’t have a history of multiple concussions, or subconcussions. There was a lot more, but I’ll limit myself to sharing the Concussion Checklist she recommended, and the Storify, if you want more. There are several interviews with her and other articles about her, if you want to dig in a little more deeply.

HOLD THE PRESSES!!! Wave the Flag! Susannah’s Coming!

Pic of the day - Flag in Dawn's Early Light

I could not have been more delighted when late yesterday I saw a post on Gilles Frydman’s Facebook stream to the effect that Susannah Fox is the new CTO of HHS (meaning: Chief Technical Officer of the United States Department of Health and Human Services). Gilles was sharing Susannah’s post on the HHS Idea Lab Blog (worth following, if you don’t already).

Susannah Fox: I’m the New CTO of HHS: http://www.hhs.gov/idealab/2015/05/28/im-new-cto-hhs/

Executive.gov: Susannah Fox Named HHS CTO: http://www.executivegov.com/2015/05/susannah-fox-named-hhs-cto-sylvia-mathews-burwell-comments/

FedScoop: “Susannah Fox, an expert on the intersection of technology and medicine, takes over for former Chief Technology Officer Bryan Sivak.” http://fedscoop.com/hhs-names-next-cto

In that post Susannah talks about her work with the Pew Research Foundation, Robert Wood Johnson Foundation, and much more. She talked about how very much she was enjoying being exactly who she is and where she was. And then, something magical happened, something magical for all of us: the HHS recruited her, went after her, and convinced her to take the CTO job. This is magical because Susannah is not just intelligent, expert, influential, and well connected. Susannah has heart. She is kind to strangers. [See Regina’s post on Susuannah’s Walking Gallery jacket: “That was my idea of Susannah Fox. I did not know her name. I did not know her job. I only knew that she was kind and was a good mother.“]

Susannah is gracious, polite, honest, and real. Susannah has family and friends, people she cares about with real day-to-day health struggles. Susannah is a person, a REAL person. She is fiercely, heart-wrenchingly protective of her kids. She thinks her hair looks funny, and she fusses to get it just so. I think she’s gorgeous, of course, and she rolled her eyes and laughed when I said her hair was lovely. She has hobbies and interests beyond the job. She has a passion for helping others, because she really CARES, and for helping others in the right way, with information and evidence and data and tools. She doesn’t help just the anonymous strangers because it looks good. She doesn’t just help the people she loves because she loves them. She is kind and helpful everywhere she goes, because that’s who she is. But she does it smart. She knows limits, and she knows that limits can be stretched when we collaborate. She knows tough choices. She knows the problems of the world can’t be forced into coming out the way we wish they would.

Susannah and I have talked over social media, email, various ways for years, and I was lucky enough to meet her in person last fall.

See? That’s me, all the way down at the end of the line. Alicia Staley is in front, Susannah is next, and Pat Mastors right before me. It was great fun, and they were all so kind. I, and so MANY others are excited, because we see hope for real, meaningful, significant change in American healthcare policy and leadership. Here are a few selected comments from public Facebook and Twitter about this (with many MANY more that weren’t public, so I didn’t share them here).

Gilles Frydman: “Today is simply a really great day for real, meaningful patient empowerment!”

Me: “Huzzah! Hurray! Whoohoo! Susannah Fox is the new head honcho of all things tech at HHS! WHOOOOO!”

e-Patient Dave DeBronkart: “This wins my prize as the biggest government-based Mazel Tov in the history of the e-patient movement! Bringing heart and soul to health IT??? From someone who knows how people ACTUALLY use the internet?? How great is this??”

Tim O’Reilly: “Awesome news from @SusannahFox http://1.usa.gov/1J5RsQt She is the new CTO of HHS. Big win for all of us!!”

Hugh Campos: “Today is a great day for the ‪#‎epatient‬ movement: Susannah Fox has announced that she’s accepted the job of CTO of HHS. Absolutely thrilling news!”

Brian Ahier: “I am so pleased that +Susannah Fox is now the CTO at HHS! Not only is she the first woman to hold this post, but she is one of the strongest advocates on behalf of patients, an incredible thought leader in the realm of health data (a true health data geek :-), but she is a genuinely wonderful person who will bring a whole new viewpoint to this role.”

Nedra Weinreich: ” A perfect role for a woman who combines tech savvy with human compassion. Congrats, Susannah!”

Meredith Gould: “SuperMongoHuge Congrats to @SusannahFox on becoming new CTO of HHS http://1.usa.gov/1eBjN4p Brava!”

Kathleen Comali Dillon: “Great news for us all- Susannah Fox is a pioneer in healthcare and waaaaay ahead of the curve.”

Casey Quinlan: “Susannah Fox is now Head Geek at HHS. I’m ‘sploding with joy”

Regina Holliday: “And the whole world clapped!!!”

Annaliz Hannan: “Sometimes the government gets it right and we, the collective healthcare consumer, win. This is our day as Susannah Fox accepts the post as Chief Technology Officer of Health and Human Services. There is no doubt she is tech savvy but it is her trusted voice in advocating for your access to your health data that makes this a banner raising day.”

Craig DeLarge: “Sweeet! Good on you! Good on us!”

Alexander B. Howard: “This is exceptionally good news for the American people.”

Joe Graedon: “Pretty amazing. Some days the good guys win! Hallelujah. Susannah earned this through vision, hard work and attention to detail. Hooray.”

Marianne O’Hare: “She’s a powerhouse! But also has that wonderful skill of making data-speak sound like a bedtime story.”

Christopher Snider: “Big news. Big deal. Congrats Susannah!”

Matthew Holt: “The lunatics have taken over the asylum in a great way today. @SusannahFox is now CTO of HHS”

Nick van Terheyden: “How cool is that – Susannah Fox appointed as CTO for HHS”

Jose Gomez-Marquez: “Congratulations! We couldn’t be more happy for @SusannahFox as the new CTO of @HHSGov and friend to geeks around :)”

I just wanted people to get to know her, a little. This is not just another by-the-book administrative appointment. This is special. Susannah is special.

GPII Gives me GOOSEBUMPS!

GPII Introductory Video

We all use technology every day. Well, people reading this blog, anyway. We use it, and everywhere we go, we either carry our own devices or spend time fiddling and fussing to make it work right. Or both. So, … have you heard about GPII?

GPII
Global Public Inclusive Infrastructure (GPII): http://www.gpii.net/

It gives me goosebumps, it really does. I’ve been hearing about this via Jane Vincent, author of “Making the Library Accessible to All” and a colleague here at the University of Michigan. Jane has been working on this project for a long time, before she came here. We are so very lucky to have her here and be informed literally at the ground level as this evolves. So what is it? What does “Global Public Inclusive Infrastructure” actually MEAN? It is the ultimate (for now) in portable technology personalization. Basically, how do you prefer to set up your computer? Now, code that into a little snippet, kind of like a credit card, and you take that with you wherever you go. Want to use a computer? Wave your magic card, and voilà! It’s set up just the way you like it.

I am, of course, oversimplifying, so here is a video introduction, and a video demo. Watch them both, and see if they don’t give you goosebumps, too!

Global Public Inclusive Infrastructure (GPII) w/captions and description:

Human Rights Museum Demo Instructions:

A big part of what I like about it is the community behind the idea and the process. Here’s a grateful nod to the following engaged and supporting organizations.

Cloud 4 All
FLOE Project
FLUID Project (which is worth an entire blogpost on their own!)
Prosperity 4 All
Raising the Floor
TRACE Center, University of Wisconsin