Tag Archives: Education

Open Access or Not? Thoughts on Selecting Online Resources for MOOCs

Birthday: Saline Train Depot: Office - Upside Down Open

I had a very interesting pair of questions come up this week. So interesting and such excellent illustrations of issues in selecting open content for MOOCs that I wanted to share it, but will “change the names” for several reasons. That this is Open Access Week just makes this even more timely. Take this as an example, a case study or sorts, nothing more. However, I do hope that those of you with more experience in intellectual property law will please chime in to clarify any thoughts or misunderstandings I might insert inadvertently.

For background, I’ve been taking a variety of MOOCs in recent years, few of which I complete, and most of which I register for with three reasons in mind. Reason One: The content interests me, and I wish I had time to learn more about it. Reason Two: I’m curious what the bibliography and resources will contain, and hope to add those to my collection, even if I don’t have time for the class. Reason Three: I’m interested in different MOOC platforms and methodologies, and learn about these best by actually trying them out hands on. As a librarian, I have a special interest in the bibliographies, the links, the readings, and where those come from. Part of my interest is personal and part of it comes from our own institution being engaged with MOOCs through the Coursera platform, and wanting to see best practices for how to identify and select content for these types of classes.

EXAMPLE ONE: OLDER PUBLICATION, RECENT COLLECTION

One of the MOOCs I took included in the recommended readings a link to classic content from the 1800s, but which is included in several anthologies, both new and old. A particular anthology was recommended, and a link provided. The link was to a PDF of the entire book hosted in a site for a Slovenian high school English teacher. Meanwhile, given the importance of the work, copies are also available in several well known and highly regarded collections of open access content. These included Project Gutenberg, EServer (hosted by Iowa State University), the American Studies Project (hosted by the University of Virginia), the Internet Archive, Electronic Classics Site (hosted by Pennsylvania State University), and others, such as societies honoring the author and other academic organizations or collections.

I was alarmed to see a link to a suspect source (Slovenian high school?) provided in preference to authoritative sources which track provenance and verify rights to content posted. I dug around in the downloaded PDF and the pages linking to it, hunting for any indication that the teacher had received permission to repost the full book for his students. All I could find was a copyright statement in the PDF that the work was under copyright and that electronic conversion was not allowed, with a statement explicitly asking readers to not encourage electronic piracy. I wanted to bring this up, but did not want to cause any problems for the professor in charge of the MOOC nor for the school hosting the content. For this reason, I did not bring it up in the class forums, but instead hunted for the faculty member’s email address to send a message about the concern and alternate locations to access equivalent content, even if it is not the same anthology.

I received a note from the faculty member explaining the selection, with an interesting perspective. Briefly the logic follows this progression.

1. The contents of the anthology are all out of copyright, and in the public domain.
2. The anthology as a whole and the editorial comments would indeed fall under copyright protection, however, these were not included in the required readings for the class.
3. The professor had asked the students to read selected pages in the work, not the complete anthology nor the introductory content by the editor. The content on those specific pages is not copyrighted.
4. The professor did not himself create the PDF, nor reproduce the pages, but merely linked to them.

As the professor put it, “the assertion of copyright is not the same as having copyright.”

I find this a very intriguing justification, but incomplete and perhaps a bit of nitpicking. I suspect that if push came to shove, if the publisher of the book chose to contest the availability of the PDF online, the professor MIGHT find that his logic stands in a court of law. I suspect that the publisher (widely international, but the work scanned was from an American imprint) might find it easier to establish a suit against American use of the work than trying to take the case to Slovenia. Copyright itself is not the only concern. Additional concerns are placing at risk the institution that provides the MOOC online, the school for which the faculty member works, as potential collaborators in linking to the suspect content. If the school and organization were aware of this and chose to support the use of this link, that would be one thing, but I am not sure that they were or are aware.

Lastly, but not least, I am concerned about the example being set for the students. In my eyes, the faculty have a duty to model information use and resources following methods recommended for their students. Here at the University of Michigan there have been times when the University has elected intentionally to push the boundaries of Fair Use in order to prevent the erosion of the rights, and knowing that they might find themselves the subject of a lawsuit. The Google Book Project is a notable example of this. Google Books is a definite example of the concept the professor noted, that “the assertion of copyright is not the same as having copyright.” If the use of this Slovenian full text link was intended to explicitly test that legal provision, that would be lovely, and I would applaud the bravery and purpose of both the professor and the institutions supporting the content. If so, I would have personally appreciated having that made clear to the students. If not made clear there is the more subtle risk that students will interpret the Slovenian link to a possibly pirated work as having the approval of the professor, especially when so many other clearly open access copies of the work are available and the link is provided in preference to those open and legal copies. That is what baffles me most.

EXAMPLE TWO: RECENT PUBLICATION, OPEN COLLECTION

This example is almost the complete opposite of the first one! This is what makes these two such an exciting pair of examples for me to explore. In this MOOC which I took, the professor had as required readings almost entirely works which were free to the students. There were just a couple notable exceptions, for which you either had to find a print copy in a library or buy a copy. I was lucky, in that I already owned a copy, but when I accidentally stumbled on a free electronic copy online, I thought the professor would appreciate knowing about it, and that it would make life even easier for the students of that course. The professor, quite rightly, was reluctant to pursue making that link available because the author is still alive and the book still in print, making it pretty clear that the copyright is still in force. So, the question became, when is it alright to share an online copy of a copyrighted work? Ever?

The first important concept to understand is that an author may retain the right to share their work, and still keep it under copyright. Even a Creative Commons license does NOT mean that the author has given up their intellectual property rights, only that they’ve simplified the process of requesting certain types of rights. Which rights are simplified depends on which CC license was chosen. So, it is possible that an author could make the choice to permit use of their work in a specific circumstance.

The second important idea is the question of whether the author or the publisher actually owned the copyright in the selected work. Just because an author wrote a book does not mean that they have the RIGHT to make the decision about whether or not it is alright to put up a free copy online. Frankly, based on what I’ve observed, authors are more likely to choose to make a work Creative Commons than publishers. There are publishers that have chosen to make ebook versions of their backfile free when the original is out of print, but that is still more the exception than the rule. For this example, the copyright is owned by the author, se we really don’t have a clue (unless we ask them).

In this example, again, there was a complete PDF of the book, but in addition to the PDF there were also multiple file formats for different e-reader devices, including accessible formats for persons with disabilities and raw text (ASCII). The PDF was not in some distant country or on the web site for a particular local school, but was instead part of a major online collection of full text works. My first step was to look at the credibility of the provider, which is pretty similar to what I did with the first example.

While I’m not listing the specific title, I will list the collection in which it appeared: The Basic e-Learning Library (BeLL) of the Open Learning Exchange, but not the version housed at their main site, rather the BeLL collection housed in the Internet Archive. I tried first to look at the actual work as posted to see if there was any statement about the rights. I couldn’t find anything. Next I tried looking for some sort of statement on the OLE site. I couldn’t find one there either. I wanted to find out more about the OLE, what they do, and how reputable they are. Well, WOW! They are an international initiative focused on providing high quality education resources to 3rd world countries. And do they have powerful partners: UN High Council for Refugees; US Agency of International Development; US State Department; Oxfam …. And those are only a few. My gut reaction was, “They are partners with the US State Department? Well, they MUST be legitimate and responsible!”

I came very close to stopping there, placing my trust in the State Department and the United Nations to properly vet their partners. The group is doing such a good thing, and I really WANT deeply to believe in them and support this wonderful thing they are trying to do, helping low income countries. But then I tried to reverse verify this, and again ran into problems. I tried to find anything on the UN or UNHCR sites to show that they have a partnership with OLE. Hunh. I couldn’t find them listed on the UN site, but there were a couple links on the State Department site. Not anything saying they are partners, but at least people connected with the organization are presenting at State Department events. Normally, I would really not be working this hard. Normally, I would have called this credible and dropped it, which is what I had done when I made the recommendation to the faculty member. But it was starting to really bug me that I had spent so much time on their OLE site and could NOT find anything explicitly about their licensing of copyrighted content, efforts to negotiate in good faith with living authors or their representatives, or anything else. Most of the links that turned up in my searches were broken. Here is what I did find.

“Part 2: Quality Open-Source Content”
“Did we mention that all of these resources are freely available to members under the Creative Commons License?”
http://ole.org/open-educational-resources/

Now this just reads wrong. Open source applies to hardware and code, not to, well, books. Open ACCESS is the correct phrase for books, literature, articles, and other written works. And, well, if the works actually are open source, or open access, or creative commons licensed, then they are available to EVERYONE, not just members. It sounds wrong, at least to me, to even imply that the content is limited to members-only.

I kept digging. I found their Learning Toolkit page, which stated:

“The Open BeLL – Coming Soon!
Our virtual interactive library will now be available for public preview”

Preview? That again makes it sound as it, well, the content isn’t actually open. And I thought their “virtual interactive library” was already available through the Internet Archive? By this point I am so baffled, I don’t know what to think. I start asking my colleagues, one of whom actually finds the official OLE Copyright Statement. The reason I couldn’t find it was because I was looking on their web site. Now, why on earth would I expect to find their legal statements on their own web site? [sarcasm] It was instead on the Internet Archive site.

Open Resource Library - Copyright Statement
OLE Copyright Statement: https://archive.org/stream/OLECopyrightStatement/OLE_Copyright%20Statement#page/n0/mode/2up

Briefly, what this says to me is that they are putting up full text of commercially available copyrighted works under a Creative Commons license with the assumption that this falls under Fair Use. Let’s take a second and look at fair use a bit more.

“Section 107 also sets out four factors to be considered in determining whether or not a particular use is fair.
1. The purpose and character of the use, including whether such use is of commercial nature or is for nonprofit educational purposes
2. The nature of the copyrighted work
3. The amount and substantiality of the portion used in relation to the copyrighted work as a whole
4. The effect of the use upon the potential market for, or value of, the copyrighted work”
US Copyright Office, Fair Use. http://www.copyright.gov/fls/fl102.html

I’m no expert on Fair Use. You can find more information on this from Stanford, Texas, and our own University of Michigan Copyright Office.

One of my favorite resources from these groups is the UM “Fair Use Myths.

Fair Use Myths: http://guides.lib.umich.edu/content.php?pid=396670&sid=3248179

The first myth states approximately that just because what you are doing is educational is not sufficient in and of itself to make it fair use. OLE says that they are putting up copyrighted content under a Fair Use claim. They don’t anywhere say that they ask permission, but instead assume it will be ok, because they are good folk. (I’m paraphrasing.) The author might have agreed with them, but there is no way for us to know. But the final of the four factors to be considered is the economic impact. If OLE did not have permission, then making a PDF and text of a complete book available for free does seem like something that might possibly have an impact on sales. For me, it seems like this would fail the “four factors” test.

As I said, I’m not a lawyer, and certainly no expert, but I am a librarian, and I tried really really hard to find any evidence to show that OLE did the right work to protect themselves and their partners. I began this post believing in them, and I ended it with an opposite view. During the days I was working on this post, the work in question, the one that sparked this inquiry, has disappeared from the Internet Archive and now gives a statement of not being available due to an enquiry into a metadata error. I am wondering if someone told the author or their publisher.

CLOSING THOUGHTS

Just because you can doesn’t mean you should.

Just because you should doesn’t mean you can.

Who says so?

But what will the neighbors (students) think?

Residency Education & Care in the Digital Age – Hashtags of the Week (HOTW): (Week of October 27, 2014)

International Conference on Residency Education

The big hashtag splash in Twitter’s healthcare universe this week was the International Conference on Residency Education, with a theme this year of Residency Education and Care in the Digital Age (English Program) (Abstracts) (Facebook). Pretty darn awesome, if you ask me. Two hashtags, for two languages.

#icre2014

#cifr2014

Topics ranged from social media to apps to flipped classrooms to Facebook to fatigue to professionalism to other innovations in learning.

Infographic of the Week: Learning in the Digital Age—“I Was Pleasantly Surprised”

Infographics in research articles?
Jeffrey Bartholet. Student Poll: “I Was Pleasantly Surprised.” Special Report: Learning In The Digital Age. Scientific American (2013) 309:72-73.
http://www.nature.com/scientificamerican/journal/v309/n2/full/scientificamerican0813-72.html PDF:

I was indeed surprised when I stumbled on this research article, went to read it, noticed the image thumbnail, and thought, “Oh, my goodness, that looks like an infographic!” And it was! We’ve been talking about infographics a lot lately. Our library is talking about the roles we could play as librarians in supporting infographic development for our institution and faculty. There were multiple presentations about infographics at last month’s Medical Library Association Annual Meeting. Also in the past couple months I’ve attended a few presentations about uses of infographics to promote research findings, for marketing, or health literacy outreach. But I had not noticed that infographics have crept into the actual published and printed versions of scholarly research articles!

This one was about MOOCs, which is another interest. I’ve taken (read “lurked in”) several MOOCs, without ever completing one. I have learned useful skills relevant to my job from a MOOC, but when push came to shove between the MOOC and my real life, real life won. Or just feeling tired won. This summer is different. My son and I are taking a MOOC together, watching the videos together, discussing the assignments while we do them. I’m going to be really embarrassed if my son finishes and I don’t. I’ll be even MORE embarrassed if I bomb out and my son takes that as an excuse for him to quit. So I was very interested in this piece of research on how MOOCs are used in science education.

“One in five science students surveyed by Nature and Scientific American has participated in a MOOC—and most would do so again”

It’s worth reading the whole short article. Here are just a couple small snippets highlighting key points.

PRO:
Stefan Kühn: “I started the course because of personal interest … and was pleasantly surprised when I realized I was using it for my write-ups as well.”

CON:
Kathleen Nicoll: “Although some classes try to mimic research experiences in a virtual lab, that cannot substitute ‘for smelling formaldehyde or seeing something almost explode in your face and having to react to that.’”

PRO:
Kathleen Nicoll: “One of the huge upsides is that MOOCs can reach everyone [with a computer and Internet]—people who are differently abled, people behind bars in prison.”

CON:
Jeffrey Bartholet: “Because failure is cost-free in a MOOC, the basic human tendency toward procrastination and sloth are stronger than in traditional classes.”

PRO:
Shannon Bohle: “I like to share with my friends that I finished the course and hear everyone say, ‘Oh, you’re so brilliant. Kudos to you!’”

It also didn’t hurt my interest at all to hear about what specific courses these students and faculty found useful. I might actually want to take the one recommended by Kühn, Think Again. The infographic itself also contained some surprises. I didn’t realize that any universities were requiring MOOC participation for their residential students! Or maybe I’m misinterpreting that question? It made sense that people find superior career value from taking classes face-to-face. Hard to make a connection in a MOOC that could turn into a person willing to write a letter of reference for you. But it was surprising how the perception of learning value was almost equal! Here’s the infographic – what surprises you?

MOOCs: I Was Pleasantly Surprised
Image source: Scientific American

Future Day — Hashtags of the Week (HOTW): (Week of March 3, 2014)

xkcd: Simple Answers

Simple answers to the questions that get asked about every new technology

This past weekend, March 1st, was the second annual celebration of Future Day. As an emerging technologies person, I try to pay attention to this. While the primary hashtag was #FutureDay, there were several others that seemed to pop up along with it, of which some of the more interesting ones included:

#4futr
#futr
#futureday
#FutureOfHealth
#STEAM3
#studentneeds2025

The topics I saw highlighted on Twitter were general views on the future and the future of education. I was able to find content about the future of health, but it took digging and most of the health content was published before the actual event. Next year, I’d love to see more of the health care community organizing events and conversations about the future of health using the official Future Day as a starting point!


Future Day

FUTURE DAY

The ideas were: destroy malaria; drones save lives; coding literacy; virtual assistants; expansion of social networks; iris scanning security; adoption of 3D printing; benefit corporations; integration of self-tracking data in healthcare; data privacy; sensors you swallow; Google Fiber. The wishlist was: testube food; car-free cities; concussion-proof athletics; nuclear fusion; happiness economy; climate solution; high-speed trains; a working tricorder.


Future Day & Science

FUTURE DAY & HEALTH

The ideas were: fecal transplants; “responsive neurostimulator for intractable epilepsy;” Trimethylamine N-oxide; genomic cancer testing; bionic eyes.


Future Day & Education

FUTURE DAY & EDUCATION


First posted at the THL Blog: http://thlibrary.wordpress.com/2014/03/03/future-day-hashtags-of-the-week-hotw-week-of-march-3-2014/

University of Michigan Trends & Technology Team, February 2014

I’ve been part of the UM Trends & Tech Team for several years, and have always found it to be one of my most rewarding campus groups. We had a meeting earlier today, and I participated via Google Hangout. People often ask me where I find the cool things I share with others. Well, it isn’t something anyone can do alone. I follow lots of news services, blogs, and similar online resources, but I also depend on great people and communities, like this one.

For today’s meeting, the notes were exceptionally clear, and I was able to catch almost all of the resources mentioned. We had a few main topics, and our usual round-the-table sharing session (which is the best part, in my view). The two topics were badges and project management. While these aren’t explicitly medical or library focused, both are topics of importance to the work we do. Screenshots and links are in the slideshow above. Brief overview descriptions below.

BADGES

The idea of “Badges” is one of the recent innovations in education, and a subset of “gamification,” as mentioned in the new Horizon Report. You’ll understand the idea of Badges if you think of scouting, and the way kids train to win badges in specific skillsets. Here’s the official definition.

“A badge is a symbol or indicator of an accomplishment, skill, quality or interest. From the Boy and Girl Scouts, to PADI diving instruction, to the more recently popular geo-location game, Foursquare, badges have been successfully used to set goals, motivate behaviors, represent achievements and communicate success in many contexts. A “digital badge” is an online record of achievements, tracking the recipient’s communities of interaction that issued the badge and the work completed to get it. Digital badges can support connected learning environments by motivating learning and signaling achievement both within particular communities as well as across communities and institutions. (Source: Erin Knight White Paper)” From: MozillaWiki: https://wiki.mozilla.org/Badges

Here are some of the badges resources our team has found and is discussing. This highly selected set includes examples of how folk are using them, tools to support badge projects, and more.

AADL Summer Game http://play.aadl.org/
Badg.Us http://badg.us/en-US/badges/
Badgelab https://badgelab.herokuapp.com/
BadgeWidgetHack http://badgewidgethack.org/
Credly https://credly.com/
Open Badges http://openbadges.org/
Purdue Passport http://www.itap.purdue.edu/studio/passport/

PROJECT MANAGEMENT

Most of us have some sort of project we’re trying to manage, either at work or at home, even if it only means keeping our own lives a bit more organized. There was a subgroup of the team that has been looking at different project management tools, testing them out, and coming back sharing thoughts on what they like or don’t like. Here is a small group of the tools and add-ons mentioned in today’s meeting.

Asana https://asana.com/
Asana + Box http://blog.asana.com/2014/02/boxintegration/
Asana + M-Box http://www.itcs.umich.edu/storage/box/
Basecamp https://basecamp.com/
Evernote https://evernote.com/
Evernote – Kustomnote https://kustomnote.com/
Evernote – Taskclone http://www.taskclone.com/
Evernote app center http://appcenter.evernote.com/
Evernote Food http://evernote.com/food/
JIRA https://www.atlassian.com/software/jira
Trello https://trello.com/
Zoho https://www.zoho.com/projects/

SHARING

My favorite part of the meetings is always when we go around the table. People share projects they are working on, tools they are using, challenges they are struggling to overcome, tips, tricks, tools, news, updates, and more. Sometimes everyone has already heard about something, sometimes no one has except the person talking about it. Some of the tips were about hardware (Chromecast & Google Cast, DASH, Kitkat, Mophie). Many are always about mobile apps, which our group seems to love. There are usually a few coding tools (Fluid, Codepen). Of course, the best part is hearing what people are doing with all of these (especially the CIO using Ideascale and LSA’s brilliant social media campaign #powerof5), but if I added that in for everything, this post would be way too long. You’ll just have to explore the links on your own, or come to the meetings, eh?

Chromecast http://www.google.com/intl/en-US/chrome/devices/chromecast/
CodePen http://codepen.io
DASH https://www.kickstarter.com/projects/hellobragi/the-dash-wireless-smart-in-ear-headphones
Day One http://dayoneapp.com
DeMobo http://www.demobo.com/product.html
Dial2Do http://www.dial2do.com/
EtcML http://www.etcml.com
Fluid http://fluidapp.com/
Google Cast https://developers.google.com/cast/
HipChat https://www.hipchat.com/
Ideascale https://ideascale.com/
Ideascale for UM http://cesandbox.ideascale.com/
KitKat http://www.android.com/kitkat/
MOPHIE http://www.mophie.com/shop/space-pack-iphone-5s
Netlytic https://netlytic.org/
Paper (53) http://www.fiftythree.com/paper
Paper (Facebook) https://www.facebook.com/paper
Paperpile https://paperpile.com
Powerof5 http://lsapowerof5.tumblr.com/
Powerof5 https://tagboard.com/powerof5
Slack https://slack.com/
UM Staff Stories http://hr.umich.edu/staffstories/category/stories/
Touch Room http://touchroomapp.com
TV Tag (GetGlue) http://tvtag.com/
VSCOCAM https://vsco.co/vscocam

Science Games on Twitter — Hashtags of the Week (HOTW): (Week of January 27, 2014)

Games? On Twitter? Oh, my, yes. And the games, while quite entertaining, also foster serious purposes, from engagement in educational outcomes and flipping the classroom to efforts to reimagine the name of peer-review and professional publication. Here are a few examples (#GreenGlam, #SixWordPeerReview, and #PrincessBrideScience), showing beauty, humor, fun, wit, and some rather insightful thoughts.

#GreenGlam

I was struck by the creativity of the #GreenGlam project from the Jahren Lab at the University of Hawai’i at Manoa. From what I’ve been able to piece together, it seems that #GreenGlam started life as a “gamification” of a learning exercise for the students there. Luckily for the rest of us, it didn’t stop there, but garnered views, pictures, tweets, and engagement from a broader community. I can easily imagine using this concept to assign med students to locate Creative Common pathology images to share meeting specific guidelines, for example. Or images to support health literacy or public health outreach. Best infographic on [X] topics. What do you imagine? Here are some lovely selections from the students in Hawai’i to counterbalance the extreme cold we have here this week.

#SixWordPeerReview

While the complaints and humor about the idea of peer review remain fairly typical of similar hashtags in other years, I was impressed with how the conversations around #SixWordPeerReview eventually turned to discussions of how to improve the peer review process in general. Here are some of the humorous tweets as well as some of the more thoughtful ones.

#PrincessBrideScience

Alright, this is an indulgence. I’ve always enjoyed the film Princess Bride, but it never entered my mind to adapt it to a conversation around … science? And science education? And scientific methods? I’m still shaking my head with incredulity and delight at some of the clever puns and offerings from the #PrincessBrideScience stream.

NOTE: The tweet immediately above is in reference to this week’s new scandal:


First posted at THL Blog: http://thlibrary.wordpress.com/2014/01/27/science-games-on-twitter-hashtags-of-the-week-hotw-week-of-january-27-2014/

“How Many Hives?”: Social Media Can Prevent a Crisis with Storytelling, Engagement, & Training

Michigan RenFest 2010

This post is about food allergies and communication strategies. But let’s step back a bit and see how I got here.

Yesterday morning early (for me, but not for most docs), I attended the local Pediatrics Grand Rounds with presenter Joyce Lee. Joyce was talking on Twitter uses for clinicians and researchers. That will be another blogpost, once I have a chance to work through some of the content presented. For today, I wanted to highlight one particular bit that Joyce presented about kids with food allergies. I had somehow previously missed this, and it is too good to miss! I am particularly interested in this since both my son and I also have food allergies.

Joyce is a pediatrician (I’m oversimplifying), and a mom of kids with pretty severe food allergies. She’s also very engaged in new technologies and is interested in new learning modalities and social media. That gives a bit of context for how she and her son came up with these phenomenal and effective ways for him to both learn and communicate what he needs to have for health care crisis prevention and support from the people around him. Frankly, from what I’m seeing here, he is MUCH better at being aware of his needs and communicating them than I am. This is also a very cool idea that I wish I had thought of when my kid was in need of this. I have a lot to learn here, and this strategy would have prevented a whole boatload of problems & events for our family over several years. This is GENIUS, pure and simple.

Joyce’s son, “B,” has severe food allergies. Note that they use a letter “B” instead of his name? This is to protect his privacy on social media. This is a good best practice, and one the kids should learn and adopt as well as the parents and teachers. And family friends, and pastors, and acquaintances, and … EVERYONE! Please, DON’T use a kid’s real name online!

The problem with food allergies, which I’ve faced, is at school other kids and teachers don’t understand and can inadvertently poison the poor kid. I remember how I wept with anger and frustration when I discovered that the school therapist my son was seeing was rewarding him for good behavior with foods that triggered undesirable behavior, and then sending him back into the mainstream classroom. I bet his main teacher wasn’t too happy either, and Lord alone knows how much school he missed from the migraines triggered by the dangerous foods. For B, a mistake like that could kill him.

PART ONE

So now, Joyce’s son has a blog.

I Have Food Allergies
I Have Food Allergies:
http://ihavefoodallergies.tumblr.com/

On his blog, he has his Youtube videos. This is the storytelling part of the post. Part One describes how to tell if he’s having a reaction, and what to do. Part Two describes how to avoid poisoning him, since it isn’t always obvious (as I am STILL learning, with my own food sensitivities). Here is the first video. When she showed this in Grand Rounds, the entire room full of doctors and nurses and other hospital staff were ooohing and aaahing and laughing. It is a very charming and effective way to deliver this lifesaving content. That’s the training part.


Allergy Action Plan (Antihistamine versus Epipen) http://www.youtube.com/watch?v=6Ymah1199xo

Joyce wrote a separate blogpost that explained the background, mechanics, theory, and how this was made.

Online Peer to Peer Education or shall we call it Peer to Teacher Education?
http://joycelee.tumblr.com/post/31910454867/online-peer-to-peer-education-or-shall-we-call-it

This is pretty cool stuff. Even more cool, the school decided to show the video to all of the kids in the school, 700 of them, and all the teachers. That’s the engagement part. Even more engagement, a blogpost by Wendy Sue Swanson (a.k.a. Seattle Mama Doc) brought more attention to this. Would this video help others understand food allergies? Does this training from this one young boy extrapolate to other kids and families?

Bring Paperwork To Life: Food Allergies:
http://seattlemamadoc.seattlechildrens.org/bring-paperwork-to-life-food-allergies/

PART TWO

Now, for comparison, let’s take a look at what a food allergy action plan normally looks like.

Food Allergy Action Plan
Food Allergy Research & Education (FARE) (www.FoodAllergy.Org): Food Allergy and Anaphylaxis Emergency Care Plan: http://www.foodallergy.org/document.doc?id=234

I’ll tell you, this is vastly more attractive, clear, and engaging than what they had when my now-college-age son was in school. Still, despite the vast improvements, it is a little scary to read through, especially if you are the one responsible for saving the life of someone else’s kid. It gives you the information, but it doesn’t make you laugh, or hear the kid’s voice when they describe how it feels for them when things go wrong.

The second video is my favorite. Less dire, but it covers all the information I need so desperately to communicate to my colleagues, restaurants, and friends. How do you not poison me? Wash the table, wash your hands, be wary of tricky foods. I especially love the part about tricky foods.


Allergy Action Plan, Part 2 (Please don’t poison me) http://www.youtube.com/watch?v=EGG6_EuK3oM

I wish so much I could make every restaurant employee in the country watch this video. And have it translated into other languages. My family spends a lot of time embedded in Japanese cultural activities, which includes Japanese restaurants. My main problem is with gluten, and you’d think I’d be safe there since their cuisine is based heavily on rice. You’d have trouble believing some of the bizarre experiences I’ve had in Japanese restaurants because of the language barrier — servers who bring me the gluten-free soy sauce, and then bring my food already doused with regular soy sauce. Oh, miso? Yes, it has wheat in it. (After I’ve eaten it and my mouth is tingling and swelling.) So why did you bring it to me? [Imagine a cranky face. More than cranky.]

Here Joyce explains more of the outcomes from the first video and considers aspect that might explain why it has proved so effective.

Allergy Action Plan Part 2: http://joycelee.tumblr.com/post/36728442953/allergy-action-plan-part-2-its-been-a-while-since

PART THREE

Did they stop there? Of course not!

One of the challenges of food allergies is that despite massive fine-tuning of your lifestyle, education of others, and so forth, there is no point at which you are completely safe, no point at which you can stop being aware, when you can rest and relax and trust that you are safe. But all of us have times when we’re tired, worn out, just not on top of our game, and must trust others to watch out for us when we aren’t quite doing such a great job ourselves. Something always happens. It is just when you get to the point of feeling safe, let down your guard, and that’s when it happens.

The videos are awesome and amazing, but what about when you aren’t online, when the class is outside or on a field trip? Joyce and B have made nametags, bookbag lists, and collaborated on making a booklet with his information. Kind of a quick reference as a backup for the content in the videos. Even better, they’ve made the original files available free online for other families and parents to use.

DESIGNING FOR HEALTH: A PEDIATRIC PROTOTYPE FOCUSED ON ALLERGIES http://joycelee.tumblr.com/post/50507408498/designing-for-health-a-pediatric-prototype-focused-on

Check out the blogpost for the other file links, but here is the PDF of the insides of the booklet.

Allergy Booklet: https://dl.dropboxusercontent.com/u/1112237/nametag/allergy%20booklet_51213.pdf

MORE

Joyce is not the only parent using social media to get out their story about food allergies, trying to get people to understand what it’s like. The more people understand, the safer life will be for those of us with food allergies and sensitivities. Here is another post from Seattle Mama Doc to round out the information in the post, and provide more context. These aren’t part of Joyce’s official story, but I bet she’s familiar with this stories. I know I am.

Four Hours on a School Bus: http://seattlemamadoc.seattlechildrens.org/four-hours-on-a-school-bus/

Here is a little more information. The basics, all in one small tidy package, and a couple useful links to learn more.

Don’t Be Shy About Food Allergies http://seattlemamadoc.seattlechildrens.org/dont-be-shy-about-food-allergies/

Food Allergy Research and Education (FARE): http://www.foodallergy.org/

Kids with Food Allergies: http://community.kidswithfoodallergies.org/pages/community