Tag Archives: outreach

Plain Language Summaries for Translation in Science

First posted at the Krafty Librarian blog.


translationalhand1

At MLA last May, I was walking around the vendor hall, like most of us who attended, I assume. I was on a mission, though. I stopped by every vendor table that had anything to do with publishing or translational science, and talked with them at length about the idea of having plain language abstracts. I’ve been a fan of plain language initiatives for a long time, as evidenced by our library’s Plain Language Medical Dictionary app from some years ago. I wish I could say that I was doing this as a direct result of the PNAS article on the topic published in March, but no such luck. That would have helped make my arguments more compelling, I’m sure. I found the article today, thanks to the National Science Communication Institute retweeting Len Fisher.

A circuitous route, but effective enough to reach me. The article in question was this.

Lauren M. Kuehne and Julian D. Olden. Opinion: Lay summaries needed to enhance science communication. PNAS 112(12):3585–3586. doi: 10.1073/pnas.1500882112 http://www.pnas.org/content/112/12/3585

The article was short and sweet. It talked briefly (very briefly) about alternative modes of science communication, such as social media and blogs, and how they impact on audience, understanding, and adoption of new ideas. The authors then pointed out that these are limited to the few who choose to follow that channel, and it misses the benefits and affordances of mass media channels, a concept which they illustrated with a diagram of how they perceived the connections between the information channels and the audiences. Here’s the gist of it.

Scientists communicate with the public through these channels:
1) Social media and press releases
2) Journalist contacts
3) Lay abstracts
4) Traditional abstracts

The potential audiences are:
1) Public
2) Managers and decisionmakers
3) Scientists in other fields
4) Scientists in your own field

So far so good? There are obviously many more potential audiences as you subdivide these. In my conversations I was rather fond of mentioning insurance companies and agents as critical links in the chain of adopting healthcare innovations who are perhaps more likely to benefit from a plain language abstract. I also talked about the importance of highly motivated patients who take new articles to their clinicians as a recent and influential loop in the information chain that changes practice. For benefits to come through these channels requires not simply that there be a version of the abstract that is in plain language (a lay summary) but also, and equally important, that those lay summaries not be behind a paywall. One of the publishers was absolutely sure their abstracts were not being a paywall, and then when they went to show me, well (ahem), they found they were. As in, the abstracts were locked behind a paywall. Oops.

The most important part of the article’s diagram was the very subtle sideways dashes. Where do the journalists get the hook, the info that leads them to ask more questions and write those mass media articles that reach such large audiences? What triggers the journalist to reach out for those important conversations with the scientists? Well, the press releases, of course. That’s why our organizations work so hard on them. Seeing something posted and reposted on social media is another good way to reach them. But the traditional abstract? Not so much. The traditional abstract is crafted explicitly for other scientists in your field, and only partly for scientists beyond that. Now, a lay summary, a plain language abstract, that has HUGE potential as a way to reach journalists. It’s another marketing tool, beyond being the right thing to do to help patients, or to help get science into the hands of those who actually use it, or to help influence clinical practice and foster more rapid adoption of new discoveries and treatments.

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“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

Maker Movement Meets Healthcare

When I try to talk to peers and colleagues about the Maker Movement, one of the questions that keeps coming up over and over is what the heck this has to do with healthcare, and why am I bothering to spend my valuable time with it. So, this post has three examples illustrating the intersection of the Maker Movement with healthcare. Basically, for one of these it’s health literacy education & outreach via hands on geek project, and for the other two, there were real world problems that have expensive, time-consuming or often inaccessible solutions, for which people came up with their own solutions and alternatives. And the solutions are cool, they work, and are usually MUCH cheaper than the official solution you try to get insurance to pay for. Since not everyone has insurance, and not everyone can afford the very best possible care, I see this as a good thing. Make sure you read all the way to the end. This just gets cooler and cooler. There are more, too, this is a very small sampling, just items I stumbled over in the past couple days without even looking for them.

(1)

Have you met Sylvia? Sylvia is twelve years old, is a Maker (I’m guessing her folks probably are also), and has her own series in Make Magazine, with a really cool blog and videos. In this example, she shows people how to build a wearable technology pendant that will sense your heart beat and display the rhythm of your pulse with flashing lights in a necklace.

The Sylvia Show: Lilypad Heartbeat Pendant:
http://sylviashow.com/episodes/s3/e1/mini/pendant

The full post at Make Magazine (Super Awesome Sylvia Builds a Pulse Sensor Pendant)
http://makezine.com/2013/05/28/super-awesome-sylvia-builds-a-pulse-sensor-pendant/

Sylvia’s Super Awesome Mini Maker Show: Make a Heartbeat Pendant:

I confess, at first I thought this seemed kind of staged, but there are enough close ups of her hands actually doing things like soldering, that I decided she really does know how to do the work, even if there might be assistance or advice from others for some parts.

Here’s where you can buy your own PulseSensor (which Sylvia connects to an Arduino for control):
http://pulsesensor.com/

(2)

Here Denver Dias, an undergraduate student in Mumbai India, was working to try to create a walking aid for the blind. Yes, we have walking canes and seeing eye dogs, but this extremely early prototype uses tech to create 3d maps of the surrounding area while walking. The maps are communicated to the user by a combination of tones and vibrations. The tech includes LEDs, sonar, ultrasound, and more.

His blogpost:
Walking aid for the blind – undergrad project…
http://revryl.com/2013/08/10/walking-aid-blind/

Found via Dangerous Prototypes:
http://dangerousprototypes.com/2013/08/12/arduino-based-sensor-shoes-assist-visually-impaired/

(3)

Did you look at this and think it was some fancy looking glove a kid was wearing for a costume? Well, it isn’t. This is a design for kids who, for whatever reason, don’t have fingers. This open-source, freely shared pattern makes it possible for people to create their own prosthetic ‘hand’ with a 3d printer. You can resize it and tweak it. It’s called Robohand. Watch the video if you want to see some awfully happy kids. They are hoping it will also be useful for veterans.

Complete set of mechanical anatomically driven fingershttp://www.thingiverse.com/thing:44150

Updated Robohand design:
http://www.thingiverse.com/thing:92937

MakerBot and Robohand — 3D Printing Mechanical Hands

Via BoingBoing, NPR, and more.

3dPrinter: Donated Makerbot 3D printers accelerate distribution of Robohand mechanical hands
http://www.3dprinter.net/makerbot-3d-printers-accelerate-distribution-of-robohand

BoingBoing: Sponsor shout-out: Makerbot and the Robohand
http://boingboing.net/2013/06/20/sponsor-shout-out-makerbot-an.html

MakerBot: Mechanical Hands From A MakerBot: The Magic Of Robohandhttp://www.makerbot.com/blog/2013/05/07/robohand/

NPR: 3-D Printer Brings Dexterity To Children With No Fingers
http://www.npr.org/blogs/health/2013/06/18/191279201/3-d-printer-brings-dexterity-to-children-with-no-fingers

Now, if anyone still thinks that the Maker Movement lacks relevance to healthcare, I’ll go find more, but first stop and think about Jack Andraka, whose recent discovery of innovative technology to diagnose many life-threatening cancers earlier and more cheaply, seem very much in keeping with the philosophy of the Maker Movement.


First posted at CoolToysU:
http://cooltoysu.wordpress.com/2013/08/13/cool-toys-pic-of-the-day-maker-movement-meets-healthcare/

Heard Whilst Disabled #heardwhilstdisabled

I know, I just did a hashtags post. This is special. Just read them, OK? Pay particular attention to the posts by folks with “Invisible Disabilities.” See if you can tell which ones those are.

How to … Facebook, YouTube & Twitter for Family Planning

I was logging into our library’s shared Slideshare account this morning and noticed one of my colleagues had uploaded something new on social media. I do a lot of social media classes & workshops, so of course I just HAD to take a closer look! I was impressed, very impressed. I like her slides better than the ones I’ve been doing. Kate spent more time on hers, I think, than I usually have the luxury to do. They are clear, well organized, engaging, use excellent examples for the topic, cover all the most important concepts, and go into tools / resources / strategies / techniques that I rarely use myself since I am not the main manager for our library’s Facebook pages and groups. These are definitely worth a look, even if I am prejudiced.