“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

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

  1. Pingback: Hashtags of the Week (HOTW): Yay, Joyce! Boo, Shutdown! (Week of September 30, 2013) | THL News Blog

  2. Pingback: Hashtags of the Week (HOTW): Yay, Joyce! Boo, Shutdown! (Week of September 30, 2013) | Emerging Technologies Librarian

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