Category Archives: Thoughts

Anonymous Social Media Overview, Part Three: The Whisper Controversy & Beyond

I had said in Part Two of this series that I was waiting to talk about the Whisper Controversy because it was still unfolding so dramatically. Things are starting to wind down, and so last night I put together a Storify mapping out my perspective of the timeline of how this has all been happening.

Briefly, Whisper was trying to do a good thing, but it seemed to go wrong.
Guardian called them out on issues related to privacy & user tracking.
Story exploded.
Whisper defended themselves (mostly via Editor-in-Chief).
More explosions.
Guardian gleefully expanded on their original story.
Yada yada.
Whisper tries to regain trust (mostly via CEO).
Editorial team “laid off” pending investigation.
And now the clean up work starts.

Check the Storify for more details and specifics.

Meanwhile, Whisper is not alone. Far from it! Snapchat was hacked. Snapchat is probably the most famous anonymous social media app right now. Before they were hacked, all sorts of people were making tools (1, 2, 3) to “break” Snapchat’s rules about keeping copies of deleted pictures without permission. (The same sort of thing is happening on other ‘anonymous’ social platforms, like Tumblr with KnowAnon. And people posted private sex tapes on YikYak, which is also infamous for cyberbullying and violence and threats.) And the Federal Trade Commission is investigating some of the problems with Snapchat. People still trust and use Snapchat. And there are apps designed explicitly to, well, invade your privacy on an opt-in basis, like PeekInToo. This post has focused on the privacy issues, but violence, dishonesty, and cyberbullying remain significant issues in many online spaces. So, that’s the bad news. In the next post, I’ll look at some of the good things being done with social media.

MedX, and TEDMED, and the Inauguration, Oh, MY!!

MedX, UM Inaugural Symposia, TEDMED

Last week I was privileged to listen in on a press conference for the upcoming TEDMED. Tomorrow is the Symposia for the Inauguration of UM’s new President, Mark S. Schlissel, with Harold Varmus as a guest speaker! Later tomorrow and this weekend, I’ll be watching Stanford’s Medicine X (#MedX) through their Global Access program. Next week the UM Medical School will be hosting a viewing of TEDMED. I feel like I’m swimming in an intellectual biomedical broth!


President Schlissel Inauguration Symposia with Harold Varmus

Inaugural Symposia: Sustaining the Biomedical Research Enterprise and Privacy and Identity in a Hyperconnected Society

HASHTAG: #UMPres14
LIVESTREAM (1): http://umich.edu/watch/
LIVESTREAM (2): http://www.mgoblue.com/collegesportslive/?media=461850

The Inaugural Symposia for President Schissel’s investiture (8:30am ET to 12:00 noon ET) are composed of two very interesting topics and even more interesting collections of speakers. The first part, “Sustaining the Biomedical Research Enterprise,” is the section including the famous Harold Varmus, but also five other notable researchers from on campus, experts in chemistry, genetics/genomics, neuroscience, statistics, and biomedical imaging. (I’m excited that three of the five have expertise related to genomics!)

The focus of the first symposia centers around a recent article from Varmus and colleagues entitled, “Rescuing US biomedical research from its systemic flaws.

The provocative abstract states:

“The long-held but erroneous assumption of never-ending rapid growth in biomedical science has created an unsustainable hypercompetitive system that is discouraging even the most outstanding prospective students from entering our profession—and making it difficult for seasoned investigators to produce their best work. This is a recipe for long-term decline, and the problems cannot be solved with simplistic approaches. Instead, it is time to confront the dangers at hand and rethink some fundamental features of the US biomedical research ecosystem.”

Those three ‘simple’ sentences imply an enormity of challenges which impact both locally and globally. I guarantee it will be fascinating to hear this panel discuss these and brainstorm ways in which the University of Michigan might work towards addressing them here.


Stanford Medicine X

Stanford Medicine X 2014

HASHTAG: #MedX
LIVESTREAM: Available with pre-registration through the MedX Global Access program: http://medicinex.stanford.edu/2014-global-access-program/.

Lucky for me, the Stanford Medicine X event is on the other coast, so our local event will be almost completed when they begin livestreaming at 8AM PT (11AM ET). However, Medicine X conference lasts a solid three days, and includes topics from self-tracking to self-awareness, from entrepreneurship to partnership in design, from compassion to PCORI, from pain to clinical trials to games. It’s intense. A lot of my friends will be there, too many to name, but they include doctors, patients, geeks, and more. MedX is a powerful diverse community, and this is an exciting event.

Schedule: http://medicinex.stanford.edu/2014-schedule/


TEDMED 2014

TEDMED 2014

HASHTAGS: #TEDMED; #TEDMEDlive; #TEDMEDhive; #GreatChallenges.
LIVESTREAMING OPTIONS: http://www.tedmed.com/event/tedmedlive

TEDMED is a little different from the other two events in that it isn’t sponsored through higher education and the livestream isn’t usually free. For folk here in Ann Arbor, there is a way to watch it on campus. What you’ll see if you come includes very little that is expected. Even when someone has a job description that might sound like regular healthcare folk, what they are talking about will probably be a surprise. Beyond the idea of doctor, patient, nurse or neuroscientist, you will also hear comedians, musicians, athletes, bioethicists, military, philosophers, inventors, and more. But what else would you expect, when the theme of the event is “Unlocking Imagination”?

The TEDMED event is a little more complicated than in prior years because they are having presenters and events on both coasts — in Washington DC and in San Francisco. Some parts will overlap. Other parts won’t. You can check out the schedules for both coasts here.

Washington DC Stage Schedule (pdf)

San Francisco CA Stage Schedule (pdf)

To watch locally, details are given below.

Watch the Live Stream of TEDMED Conference, September 10-12

The Medical School will host a live stream from the TEDMED conference, which takes place September 10-12 in Washington DC and San Francisco. The focus of this year’s program is “Unlocking Imagination in Service of Health and Medicine.” Presenters include some of the most respected and undiscovered names in science, journalism, education, business, and technology. Click here to see the conference schedule. Viewing times and locations for watching the live streams are:

Wednesday, September 10: 8am-5pm: University Hospital South (Old Mott) 8th floor lounge
Thursday, September 11: 8am-12pm, 1pm-5pm: University Hospital South (Old Mott) 8th floor lounge
Friday, September 12: 8am-11:30am: University Hospital South (Old Mott) 8409 Conference Room
Friday, September 12: 11:30am-5pm: University Hospital South (Old Mott) 8419 IDTT Collaboration Space

Health Fair Meet Maker Faire! Part 3: Our Announcement!!

You saw Part One, in which the idea was born, and Part Two, in which the concept was tested and proven. So what actually happened? We’re doing it. We’re really DOING IT! By “it” I mean a health-themed maker faire/fest at the University of Michigan. REALLY!

WHAT:

We Make Health
We Make Health: http://makehealth.us

Emily Puckett Rogers had given us a heads-up about requirements for working with the official Maker Faire folk, which I had not realized was an actual brand name. So we don’t yet know if this is going to be a Mini-Maker Faire or a Maker Fest or what, but it is definitely happening!

Please note that the We Make Health event is a project of Health Design By Us, a participatory behavior change project funded as part of the UM Provost’s Third Century Initiative. It’s a completely awesome and wonderful collaboration, and you’ll be hearing more about it if you read this blog regularly.

WHEN:

Saturday, August 16, 2014

We are still settling on what happens when during the day. We are brainstorming roughly 10am to 6pm, but that may change.

WHERE:

Google Map for Palmer Commons
Palmer Commons: https://www.google.com/maps/place/100+Washtenaw+Ave/@42.2807486,-83.7335814,17z/data=!3m1!4b1!4m2!3m1!1s0x883cae4266554837:0x732dcfa6f8fb7dbe

WHO:

Joyce Lee, Doctor as DesignerPF Anderson, Self Portrait as ShadowMatt Kenyon, Artist

Us! We!

Well, Joyce Lee, Matt Kenyon, and I are taking point on planning the project (with the capable assistance of Emily Hirschfeld). Joyce is from the UM Medical School and Mott Children’s Hospital, Matt is with the School of Art and Design, and I, of course, am part of the University Libraries, Taubman Health Sciences Library. However, we have an email list for folk interested in the event which currently has over 90 people signed up. Many of them have contributed ideas, suggested contacts, volunteered to do booths or presentations, and so forth. We are reaching out to many community maker communities, and have received endorsements from several of them. You’ll hear more about our partners as the event moves closer.

CONTACTS:

1) Sign up at the We Make Health web site to receive information and updates from the Health Design By Us project.

2) If you are part of the University of Michigan, you can sign up through M-Community for the MakeHealthUM email list.

3) If you want to contact the event coordinators, our Make Health Team, you can reach us at: MAKEHEALTH at-sign UMICH dot EDU.

4) Twitter! The event itself is on twitter, as is Health Design By Us.

Make Health: @MakeHealthUM
Health Design By Us: @HealthByUs

If you want to chat with Joyce or me individually, we are also pretty easily reached through Twitter:

Joyce: @joyclee
Patricia: @pfanderson

5) Please feel free to comment on this post! We will have a blog for the actual event, but that’s still being set up. More soon!

WHAT’S NEXT:

What’s coming next is more blogposts and more news! We will highlight some of the technologies and people that will be highlighted at our event, the partners we’re working with, and exciting spinoff projects to help the energy last beyond the actual event. We’ll tell you more about some of the other folk working on health maker events, and other maker communities around the University and the Ann Arbor community.

Health Fair Meet Maker Faire! Part Two

GO-Tech Meeting at Maker Works

In yesterday’s Part One post, I left this with me trying to decide what ideas were most important to show Barbara Stripling. I had drafted a looooong blogpost on April 15th, and showed it to my friend and colleague, Kate Saylor on April 16th. Kate and I were digging around in the post, and the question came up of looking at health maker faires. I didn’t think there had been one. The conversation went something like this.

“Really?”
“Really.”
“Hmmm, that’s odd.”
“Let’s look.”
“Good idea. If anyone can find it, you can.”
“OMG, I can’t find any! Look! There are ones on sustainability, and green living, and one which include health booths, but I can’t find ANY actually themed around health!”
“REALLY?!”
“We have to do this.”
“We TOTALLY have to do this.”
“WOW.” “WOW.

The next person called was Emily Puckett Rogers, another librarian who is one of the leaders behind the Ann Arbor Mini-Maker Faire. She had a LOT of good ideas and information. We brainstormed a while, and then the next step was to start talking with other people to get more ideas. The following day, April 17th, I started a shared spreadsheet in Google Drive for folk to share ideas and collect them in one place. Word spread across campus like wildfire, and many people were making edits. The first week I kept the doc open and just kept watching in astonishment as people across campus kept logging in and out of the file.

April 18th I had a meeting with Joyce Lee about another mutual project. As we walked out of the meeting, I was telling her about this idea. Her reaction was along the lines of, “Isn’t this what we are trying to do? We should do this! We should sponsor this!” And we were off and running.

We started out brainstorming what sort of topics were a good fit for a health maker fair or festival. Oh, there are plenty, and for almost all of them someone would know of a local person doing work with that tech. At this point what I wanted to do was prove the viability of the concept by taking things I’d seen from maker fairs I’d attended and sifting out those with any kind of health relevance. I tried to distill those examples down into a few categories with just a few examples each, but leaving enough conceptual wiggle room to imply some of the other possibilities. The framework I came up with (yes, I know, I’m the acronym queen) is CLASP.

CLASP
* Creativity
* Literacy
* Access
* Sustainability
* Personal Problemsolving

The core ideas contained in CLASP apply to all makerspaces, not just the health aspects. There is also a lot of overlap in the ideas themselves. Typically, each example will include all the concepts. I’m just using this as a tool to help me organize and prioritize the examples I’ve collected.

CREATIVITY

GO-Tech Meeting at Maker WorksAnn Arbor Mini Maker Faire 2013
Ann Arbor Mini Maker Faire 2013 Ann Arbor Mini Maker Faire 2013

One of the things I adore about the Maker Movement is the way people come up with their own solutions to their own problems, as individuals and as a community, through exploration, innovation, experimentation, and creation. Patient communities have been doing the same sort of thing — sharing problems and solutions, brainstorming, turning solutions into marketable products, and more. I’ve been deeply inspired and impressed with the prosthetic solutions coming from 3D printing, from Robohand & Roboleg to the beautiful prosthetic limbs (see the work done by Sophie de Oliveira and Scott Summit).

Closer to home, many people with injuries or conditions that effect mobility find themselves struggling to get in and out of clothes on their own, something that happened to me last year with my shoulder injury. The solutions can be unique to an individual, based on range of motion, grip strength, fine motor control, and other factors. Resources like sewing machines, CAD/CAM tools for modeling, and sergers can be critical to those solutions. Other persons may find healing through something as simple as a beautiful work of art, and the lights and wooden star shown here can be mentally soothing, stimulating, engaging, calming, or a source of meditation and focus. The idea of book binding connects to health, for me, as I encourage patients with a new diagnosis or long-term condition to keep their own notebook about their symptoms, treatments, meetings with providers, questions asked, answers given, etcetera. Being able to customize and personalize your own book makes it more meaningful. I don’t know, maybe this is overkill, or maybe it is the start of a great idea.

LITERACY

Ann Arbor Mini Maker Faire 2013 Ann Arbor Mini Maker Faire 2013 Ann Arbor Mini Maker Faire 2013: Eli Neiberger of AADL Detroit Maker Faire 2013

I’ve never been to a maker faire where I didn’t encounter a librarian. Literacy is a big deal for librarians, and health literacy is a big deal in health care. Your standard health fair is focused around health literacy — communicating the basics around important health topics and common conditions, as well as best practices for prevention. But most of the interaction is one-sided. Health fair attendees pick up fliers and sometimes ask questions, but it isn’t literacy in the way that maker faires handle it. In maker faires, literacy isn’t just “what is it” and “let me tell you what to do.” Literacy becomes “how can I do this myself” and “what skills do I need to take this to the next level” and “what is possible if I [fill in the blank].” Literacy includes playing games to actively engage with a topic as well as building things and identifying what you need to know to achieve your own goals.

In these images, there is a librarian wearing a “Dig into reading” tshirt while she assists at a booth teaching soldering skills; a larger than lifesize version of the Operation board game which can be used to teach hand-eye coordination as well as humorously presented anatomical concepts; another librarian connecting gaming to science and technology fundamentals; and a young scientist showing science products and presenting science literacy concepts. You can’t see it in this picture, but in another image, the same young scientist shows off 3d printed laboratory equipment.

ACCESS

23andMe Celiac Disease Risk Markers
Pebble Pals

In libraries we tend to think of access to information (ie. books and journals) first and foremost. Next we think of access to the buildings, and accessible design. With online information, we think of web accessibility. When we talk about the digital divide we mean access to certain types of technology and networking. With makerspaces we think of access to completely different types of technology. Somewhere along the line we usually mention the skills needed to use these things, but I’m not sure that skills are considered part of the challenge of access. I’m thinking the question of access may be bigger than any of these, and in healthcare, there may be portions of access that are broader and/or narrower than what we usually consider.

The first image above is a snippet from one of my 23andMe health reports. Yeah, the ones that the FDA has told them not to do anymore. Luckily, I got in before that happened. This is just a tiny part of an idea. What’s important isn’t just access to personalized genomics information, or to 23andMe, or even to the health reports. What’s important is a bigger challenge — that the increasing demands on the healthcare system are driving more engagement by and with patients, and there are needs and demands for a very type of information than has usually been made available about health for people who are not medical professionals. There is a need for access to tools and skills that have traditionally fallen outside the purview of the patient.

The second image is of Pebble watches, a wearable technology tool that connects to smart phones and sensors and can be used for games and utility, but also for personal health management. The Maker Movement philosophy has come to healthcare in a HUGE way, and shows no signs of going away. Not only does healthcare need to acknowledge and accept this, but also needs to support, provide access to skills and training, create tools for integrating personal data with electronic health records, and beyond. There are ‘new’ buzzwords giving a glimpse into some of what we could be doing and what might fit into healthcare makerspaces and healthcare maker faires. Here are just a few.

Participatory medicine
individualized medicine
personalized medicine
personal genomics
quantified self
self-trackers
n=1 studies
DIY biology
biohacking
microbiomics
sensors
wearable technology

I don’t know about you, but my brain is going, “Whoa.” How on earth has this not already happened in a HUGE way?

SUSTAINABILITY

Ann Arbor Mini Maker Faire 2013 Ann Arbor Mini Maker Faire 2013: "Be My Sunshine" Heart Box Pic of the day - Vinegars & Pickles Ann Arbor Mini Maker Faire 2013

Hang around with folk in public health for any length of time at all and you start hearing about diet management, outreach, food deserts, community health, environmental health, risk science, and related concepts. An awful lot of what happens in public health is trying to help people and communities develop better ways to create healthy places and lifestyles. This can be growing urban gardens, canning your own produce, putting in solar-powered energy cells, making your own sensors to detect air pollution, and much much more. This is a huge area for connecting what’s happening in maker communities with public health.

PERSONAL PROBLEMSOLVING

Cool Toys Pic of the Day - Maker Movement Meets Healthcare Cool Toys Pic of the Day - Maker Movement Meets Healthcare Detroit Maker Faire 2013 Ann Arbor Mini Maker Faire 2013

We all have problems, we all have challenges in our lives. People with chronic health conditions or caring for someone with a chronic health condition maybe have more, but we can all benefit from skills to help us identify problems, brainstorm possible solutions, and design ways to implement those solutions whether by ourselves or in collaboration with other talented folk. In the Maker Movement, there are a lot of examples of people helping other people to create solutions for both interesting and ordinary problems. Spoons that are easier to grip, glasses that don’t wobble when your hands shake, shoes that sense obstructions you can’t see and warn you, sensors as jewelry or tattoos to monitor your vital signs — these are all examples of creative solutions to personal problems, and there are a LOT more examples out there.

So, are you in? Want to help? When do we start?

Health Fair Meet Maker Faire! Part One

Barbara Stripling for NLW14 on the Declaration for the Right to Libraries

I want a health-themed maker faire. I want it so bad I can TASTE it! And I want it to happen, like, yesterday. Or right now. But let me back up. Here’s what happened. Monday, April 14, 2014, Barbara Stripling came to town to talk about the Declaration for the Right to Libraries. You can read more about her morning talk in the Storify.

To abbreviate DRASTICALLY, the gist of the idea is that libraries overwhelmingly change lives for the better, and that people everywhere have a right to the resources that will support them in taking charge of changing their lives for the better. One of the ways in which libraries have traditionally helped people change their lives for the better is through providing free access to information, education, and entertainment. That’s what Andrew Carnegie was thinking about when he funded the creation of thousands of free public libraries.

October 19, 1903

“Increase our wages,” the workers demanded. “What good is a book to a man who works 12 hours a day, six days a week?” Nasaw says Carnegie thought he knew better and replied to his critics this way: “If I had raised your wages, you would have spent that money by buying a better cut of meat or more drink for your dinner. But what you needed, though you didn’t know it, was my libraries and concert halls. And that’s what I’m giving to you.” How Andrew Carnegie Turned His Fortune Into A Library Legacy http://www.npr.org/2013/08/01/207272849/how-andrew-carnegie-turned-his-fortune-into-a-library-legacy

One of the ways in which libraries have more recently helped people change their lives for the better is through providing free access to the Internet, software, printers, makerspaces, 3d printers, and a wide variety of other tools and resources and skills that empower people to make things to better their lives, and which they could not afford to try if they had to buy the necessary resources out of their own personal budgets. From baking special holiday cakes to commemorate old family traditions with pans from the library to creating a new career and developing new marketable skills, the library can be the place.

“I had these inventions in my head but didn’t know I could make them myself,” Roth explained. So he spent his remaining dollars on a membership and a few introductory courses… Fast forward a few years to spring 2013. Roth is now an entrepreneur with a funded laser company… His dream is to build his own version of TechShop called “the Learning Shelter” that specifically caters to the homeless.” Homeless to hacker: How the Maker Movement changed one man’s life http://venturebeat.com/2013/05/16/homeless-to-hacker-how-the-maker-movement-changed-one-mans-life/

That quote is about Marc Roth, who was homeless when he used his assistance money to purchase a membership to a local makerspace. Perhaps the nicest thing about makerspaces in public libraries is that you don’t need to purchase a membership!

Well, towards the end of Barbara’s talk, seemingly almost as an afterthought, she mentioned that the White House is sponsoring its first Makerfaire! And, naturally, the American Library Association is talking with them about this. Barbara gave warm praise to Kristin Fontichiaro, a University of Michigan faculty member who is working with makerspaces in schools and libraries. And then she said something like, “If any of the rest of you have ideas for innovative work in this space that we should be keeping in mind, please come see me after the talk.”

Well, I wasn’t first in line, but I was most definitely in line. I wanted to ensure that when the Maker Movement / Makerspaces / Maker Faires are discussed, health is not forgotten. Every Maker Faire I’ve attended has had multiple presenters talking about something related to health. I have lots of ideas, and lots of examples. So Barbara then said, “Email me. I’ll try to include this topic in our conversations with the White House. But. Keep it short. Not TOO many examples!” That’s why I started this blogpost. I have literally thousands of links to examples of maker activity connected with health. How to choose just the few most important ones? ARGH!!

Scribbling notes

I scribbled notes and ideas all day, searching related topics and shoving links into a file as fast as I can, when I realized I’ve done it again. I had too much to start with, and now I had even MORE too much! The challenge / opportunity lies in that, when you really look closely at it, EVERY tool, technique, or technology involved in the Maker Movement is or has, can or could, or should be used in healthcare! That’s a LOT of opportunity. And that’s how this grand adventure started.

Every Day In Many Ways: Solving “Wicked Problems” at the University of Michigan

Horizon Report 2014 Trends & Challenges
Horizon Report 2014: http://www.nmc.org/publications/2014-horizon-report-higher-ed

The past couple months, the Cool Toys Conversations group has been discussing the Horizon Report, as we do every year. This year we decided the collection of technologies was perhaps not as interesting as the trends and challenges they identified (screenshot above).

Yesterday, over the lunch hour, the group became particularly interested in the wicked problem of “Keeping Education Relevant.” There was a lot of good conversation, and I unfortunately did not take notes, so I am going to trust my memory (HAH!). The gist of it was encapsulated in a couple points. David Crandall pointed out that there is a strong relationship between the so-called solvable challenges and the so-called wicked (or unsolvable) challenges, with the hint that perhaps solving the solvable challenges might actually take us a long way towards solving the unsolvable challenges. (Yes, it’s ok to giggle – that’s a lot of the same word.)

Next was the observation that “Keeping Education Relevant” is distinct from keeping learning relevant, since learning is ALWAYS relevant. So the question is less about how to keep learning relevant, but more about how to position the kind of education that happens in higher education as an active participant in the broad open amorphous space that is comprised of all those glorious online and offline social learning spaces that people love so much.

Last but not least was the interjection that, Hello! Maybe it isn’t so unsolvable after all, since so many folk here are already doing such exciting things to position us, as academics, in ways to show relevance to the public and to engage with the public. Actually, I suspect that all major universities are engaged in similar kinds of activities, and working hard to make clear the ways in which academia is not only relevant, but makes possible research and learning opportunities that benefit the broader communities and which would not be possible or practical in other types of spaces and structures.

Here are just a very FEW examples of activities around campus that are, frankly, not atypical and which illustrate ways in which we are making academia relevant here, every day, as a routine part of business.

UMSI MAKERFEST

#UMSIMakerfest !!! | #UMSIMakerfest !!!
#UMSIMakerfest !!! | #UMSIMakerfest !!!

Today, the School of Information had a Makerfest in the Union. As you can see from the poster, they had a lot of cool stuff going on, from Google Glass and Rasperry Pi to video games and cookies. Among their partners for this event were multiple community makerspaces, both the campus and local public library, individuals with special talents or resources, and of course, campus groups. Was the audience just college students? No way! Students were there, but also parents and kids, teachers, staff, community, and I don’t know who else.

#UMSIMakerfest: https://www.flickr.com/photos/rosefirerising/sets/72157642967068393

TEDXUOFM

DSC_0149 | IMG_6735
3O5A9174_Kimwall | TEDxUofM
IMG_5416 | eak.FEA.TEDxUofM.4-8-11.044.

A couple weeks ago (less, actually), the campus had our TEDx event (TEDxUofM). TEDx events are gatherings of fascinating people sharing innovative and creative ideas. They are spinoffs from the large TED organization where TED stands for Technology Entertainment and Design. My brain keeps trying to change the “E” to “Education”, since that’s what my brain associates with the TED videos, but when you think about it, “Education” and “Entertainment” are pretty closely related in many important ways.

With our local TEDxUofM event, it ALWAYS is highlighting topics that connect academia and the real world, projects that make a difference in the lives of real people, stories that touch hearts and lives. It doesn’t accomplish this by just making a forum for faculty to preach to the choir, but by giving prominence to projects by students and alumni as well, and by getting faculty to talk about their passions beyond their official job duties. In this sense it is like most other TED and TEDx events. Here, of course, the event connects the campus and the town and community. There isn’t just one TEDx event locally, but several — TEDxDetroit, TEDxUofM, TEDxEMU, TEDxSkylineHS, TEDxArb, TEDxYouth@AnnArbor, TEDxUMDearborn, and probably more I haven’t covered/discovered. TEDx events are partnerships with the community, ways to bring information out of ivory towers and into public spaces. They engage, emote, intrigue, and inspire. They foster awareness, and through awareness future collaborations.

RISK BITES

In Andrew Maynard’s recent presentation, “Should Academics Get Down and Dirty with Youtube?,” he illustrated the power of Youtube to reach the public, to educate, to inform, and to potentially inform policy and decisionmakers. This insight of his was reinforced by President Obama’s recruitment of video bloggers (vloggers) with strong reach among the youth audience in order to disseminate critical information about the Obamacare registration deadlines.

Andrew highlighted a number of influential vloggers who present content on science and research, but who are not themselves from academia, then asking what is it that they are doing that we are not? Why is it that the general public obviously have a passion for information about science, but find science information more persuasive when presented by someone who is not a scientist? What are we not doing that we should be or could be doing? These questions are what inspired him to create the Risk Bites series of science videos, in which he endeavors to position academic and heavily evidence-based science information in a public space in a way that will hopefully reach those who need the information. Here is the most recent video from that series as an example.


What’s the difference between hazard and risk? https://www.youtube.com/watch?v=_GwVTdsnN1E

ROAD SCHOLARS

Goodwill-Industries | Chateau-Chantal
Cascade-Engineering | Discussion-with-legislators

The University of Michigan Road Scholars program has been going on for DECADES. The idea was, yet again, how to make academia relevant to the communities in which we find ourselves. More than that, it was how to create bridges, connections, and partnerships between the University and the people of our state. In the Road Scholars program, faculty travel the state on a kind of pilgrimage to various communities around Michigan, developing a genuine and personal connection to the people and places, learning about the initiatives and work that is done around the state, and fostering opportunities for outreach, partnerships, mutual regard and learning.

GHANA EMERGENCY MEDICINE COLLABORATIVE
D80_35
Ghana-Michigan Conference Nov 2009 023 | Ghana-Michigan Conference Nov 2009 024
D80_30

The Ghana Emergency Medicine Collaborative is another project that has been going on for a while. These images are from an early event in 2009 which laid some of the groundwork for this collaboration between the University and medical programs in Ghana. The collaboration involves individuals from both schools going to the other country to learn more about needs, resources, and opportunities. This innovative partnership drove much of the initial development of the University’s creation of open education resources, and has proven to have a large and lasting impact far beyond the original scope of the project.

CLOSING THOUGHTS

Are you here at the University of Michigan? Are you interested in a campus-wide conversation about barriers to innovation in education and what we are already doing to solve these problems? Do you know of some amazing work people are doing to help keep us relevant? Please add your thoughts in the comments.

Between Privacy & Transparency Comes Invisibility & Visibility (Rare Disease Day 2014)

Pic of the day - A Crossbanded Sky

Today is Rare Disease Day 2014. I’ve been an enthusiastic promoter of Rare Disease Day and everything it stands for since the first one on February 29th of 2008. A friend of mine, Denise Silber, was instrumental in the activities behind its beginnings in Europe, and at that time I was intimately involved in my own work life with dentistry and facial difference, where birth defects and rare diseases are often looming concerns for clinicians and caregivers. Since then my work has often dealt with healthcare social media, where issues of privacy and transparency loom large. I’ve been spending a great deal of time in the past year or so thinking deeply about privacy and transparency issues, as part of writing my book chapter for the recent Barbara Fister volume from ALA.

My new book chapter on privacy & transparency
Finding a public voice, Barbara Fister as a case study: http://www.alastore.ala.org/detail.aspx?ID=10691

This morning, catching up on email and Twitter, there were two pieces made me perceive differently the pivotal role of privacy and transparency in healthcare communities, both versions of which ultimately tie into the same foundation.

“For one, letting a website know you’re using a screen reader means running around the web waving a red flag that shouts ‘here, I’m visually impaired or blind!’ at anyone who is willing to look. It would take away the one place where we as blind people can be relatively undetected without our white cane or guide dog screaming at everybody around us that we’re blind or visually impaired, and therefore giving others a chance to treat us like true equals. Because let’s face it, the vast majority of non-disabled people are apprehensive in one way or another when encountering a person with a disability.”
Marco Zehe. Why screen reader detection on the web is a bad thing. http://www.marcozehe.de/2014/02/27/why-screen-reader-detection-on-the-web-is-a-bad-thing/

This highlights the issue of persons being excluded from mainstream society while they are visible, and seeking anonymity or invisibility in order to be accepted and treated “like everyone else.” There are many other examples like this — any condition related to facial difference carries stigma; any condition that makes difference visible (such as wheelchairs or service animals or assistive technology); other social situations that might be visibly connected to stigma, such as race, poverty, gender, gender identity, etc. In this context, visibility is … awkward, and sometimes painful. Or rather, it is the situation of being visible while being made to feel invisible at the same time. Alternatively, if acknowledged as visible, they may be objectified, as a token representative of the disability or stigma, or with the assumption that they are incapable or insufficient in some way. In these communities, people sometimes find that by making themselves differently visible, such as being in online communities, they are no longer put in the position of being pushed into pseudo-invisibility or are given the opportunity to succeed or fail, to contribute based on their own capabilities as an individual, not being judged by their situation or condition or disability.

It is hard not to next think of conditions or situations in which the condition, situation, or context begins with invisiblity — mental health, diabetes, chronic fatigue or chronic pain, many other chronic illnesses. For many of these (and I count myself among them), the person has genuine restrictions on what they can do, but this is not evident to others, who expect the person with the invisible disability to be able to do much more than they really can. It isn’t uncommon to hear “but you look normal.” It isn’t just invisible disabilities, of course, but also the social or cultural context. Did you grow up poor or battered or otherwise traumatized, and now feel as if you don’t ‘belong’? There are times, as a person with invisible disabilities, that I wish I had a sign to say, “Quit laughing at me because I can’t do what you take for granted! Quit expecting me to [fill in the blank]. You don’t understand how hard it is for me because it is easy for you.” Times when I want something that says, don’t expect too much because I’m not as able-bodied as I seem. But that doesn’t last long.

Pic of the day - White Pride

Somewhere in between both of these comes the idea of passing. Passing as white. Passing as straight. Passing as middle class. Passing as healthy. Passing as sane. Passing as “normal.” Those who, visible or invisible, actively seek and cultivate a specific image or identity to project, often less by choice and more by necessity, a need to have a job, health insurance, a safe neighborhood. As long as I can “fake it” as able-bodied, you can bet I will be doing so. Partly for the practical reasons just mentioned, and partly because trying to seem able-bodied makes me actually stronger and extends my endurance in real life.

There is more to the idea of visibility and invisibility in health care. With rare diseases, part of the challenge to diagnosis is the very fact that they are rare. The assumption for most diagnosticians is that the rare condition is unlikely, and that the more likely options should be ruled out first. This is strategically sound and wise, but results often in long drawn out diagnostic processes. THe idea that the diagnosis is a rare disease is almost an invisible idea. Then, after receiving the diagnosis, comes the feeling of being invisible in a health care system designed to support the more common diagnoses. Feeling invisible in the sense of seeing no one around who is “like me.” Feeling invisible because you can’t find someone else who’s life is “like mine.”

Invisible because you can’t find a way to make your life visible. Invisible because the challenges you live with aren’t taken seriously. Invisible in that people look at you and see someone different from who you believe yourself to be. Invisible in that the condition or disability is invisible, and some how you got carried along with it, fading away. Invisible in the sense that your fatigue, or pain, or lack of mobility, or other challenges keep you out of mainstream life; that you can’t afford to go to movies or shows because your meds cost so much; that the largest part of your life is hidden and unseen.

There are times when you want the privacy so you don’t need to explain. And there are times when you wish it was all visible already so you wouldn’t need to explain. Visible, invisible; private, transparent.

“In our case, privacy meant that Maureen’s health information was not visible (or transparent) to the team of oncologists and pathologists at M.D. Anderson as quickly as we needed it to be, so that a diagnosis could be rendered swiftly and a course of treatment commenced immediately. Privacy, without necessary (and user-controlled) transparency, can indeed be the difference between life and death.”
Gary L. Thompson. “A View from the CLOUD: Are Privacy and Transparency on a Collision Course or Two Sides of the Same Coin?” http://www.hl7standards.com/blog/2011/07/27/a-view-from-the-cloud-are-privacy-and-transparency-on-a-collision-course-or-two-sides-of-the-same-coin/

Gary points out some very important issues here. Privacy, unwished for, can be deadly. Transparency, unwished for, can also be deadly, such as for victims of bullying or domestic violence. The invisibility of “rare diseases” in the diagnostic process can slow things down to a dangerous pace. Not knowing what is wrong can be dangerous, can result in ‘treatments’ that make things worse, or at best delay getting better. Not being able to get a diagnosis is isolating and frightening. Looking “normal” when you aren’t can be isolating. Being treated as “invisible” when you aren’t is isolating. Having a rare disease, any rare disease, is isolating. Transparency can do away with parts of the isolation, but then can also open the door to other possible risks.

Until the world becomes a perfect place, we will need both privacy and transparency, we will need the opportunity to choose between them, to shift between visibility and invisibility.


Rare Disease Day 2014

More about Rare Disease Day

Global Genes: http://globalgenes.org/world-rare-disease-day/
NIH: Rare Diseases: http://rarediseases.info.nih.gov/news-and-events/pages/28/rare-disease-day
Rare Disease Day US: http://rarediseaseday.us
Rare Disease Day US: Map: http://rarediseaseday.us/events/rare-disease-day-2014-countdown/
NORD (National Organization of Rare Diseases): https://www.rarediseases.org/about/partnerships/rare-disease-day