Wednesday, September 2, 2015

Communication Breakdown - No, I Didn't Say Treatments are Cures

What's quoted in the media isn't always what it seems. Unfortunately, I was reminded of this because of a misquote involving me that reared its ugly head after googling "Jessica Martin food allergy." (Always good to occasionally google yourself to make sure all is good with your public, digital self).

The good news? The Food Allergy Sleuth blog is the top google hit (yay! I'm #1)!

The bad news? Discovering a misquote floating on the internet from my foray into being the science interviewee (at least it was on page 2 since most people don't go beyond the first page, right? RIGHT?!). In the words of the infamous Homer, "Doh!"

Photo credit: Flickr user hobvias sudoneighm

So what went wrong?

This particular article covered the science of creating a hypoallergenic cashew (link to original research study). I was solicited for not only being knowledgeable of the science of food allergy, but also my perspective as a mother to a food allergic child. At the time of the interview, I remember talking with the writer extensively about this study, my feelings about the study's implications for those who are food allergic, and where I thought treatments for food allergies were headed. It seemed to go well. I thought I communicated effectively, and yet when the article was published, I clearly didn't do my job as well as I had thought. My quote about preferring a "cure" over creating a whole bunch of hypoallergenic foods referred to the wrong thing! Repeat after me health and science reporters, "Treatments are not the same as cures." I immediately contacted the author who graciously fixed the error post-publication. Crisis averted... or so I thought. The problem is that articles written by one media outlet, get picked up by other media outlets, and those media outlets likely have the original, unfixed version. Crap. Syndication.

So what did I find on page two of my Google search? The original article which was first published by Ozy was picked up by the popular NPR - The Salt.

Here is the misquote:
Even if researchers do successfully manufacture hypoallergenic nuts, some view them as the second-best solution. "My preference ... would be to actually decrease the allergic response of the individual," says Jessica Martin, a food allergy blogger whose son is allergic to pistachios, cashews, a host of other tree nuts and about 15 other foods. Oral immunotherapy "is the holy grail in my mind. I want a cure." 
Notice how oral immunotherapy (OIT) is followed by my quote?  Not once did I mean to imply that this promising TREATMENT referred to the "holy grail" CURE (i.e., immune tolerance). OIT is an experimental treatment that as far as we know, requires continual maintenance dosing of the allergen to remain desensitized to the allergen. The long-term outcomes are very much unknown, but evidence indicates that the allergy can come back with a full vengeance should patients lapse in their maintenance doses for an extended period of time (links to a few studies/reports: cow milk, peanut, immunological markers with peanut OIT, egg after 3 months no exposure, egg after 1 month of no exposure).

The take-away - be a savvy sleuth

1. If you see that an article you are reading "originally appeared" somewhere else, do yourself a favor. Stop reading and click through to the original source. The problem with syndication is that if the original article is edited post-publication, any syndicated versions quite likely won't be updated. This was the case for me.

2. Pay attention to publication dates. Every article should have a publication date (be sure that it is the original publication and not a syndicated version). When it comes to science reporting, be cautious of interpretations if the article is more than a couple of years old. Old content isn't necessarily wrong, but if you read an older article, you should do additional sleuthing to see if there is anything more current on the topic. Conventional wisdom can change with new evidence, yet the internet "never forgets" old ideas. Don't educate yourself with old ideas as absolute fact.

3. Read the abstract (at a minimum) of the original research article. Does the article coverage seem to match the original research? If the article you are reading doesn't reference the original scientific source, immediately be skeptical and find additional, more reliable sources.

My take-away

While I consider myself a decent science communicator, this experience was eye-opening for me. There are always ways to improve. It is increasingly important that scientists are able to effectively communicate their work beyond the ivory towers. Communication differs drastically between academia and the rest of the world. It certainly can't hurt to practice boiling down complicated jargon into understandable, but accurate sound-bites and metaphors using anyone willing (or unwilling - sorry to my students :) to hear you out and provide feedback. Be careful of sharing too much information - it can get mashed up in ways that make an unsavory mess (lesson learned). I'm reminded of this method from an old coach, who told us to KISS - keep it simple stupid - it.

I'm really excited to learn about Alan Alda's Center for Communicating Science at Stony Brook. My hope is that more academic institutions reward their trainees and faculty for participating in these much needed public endeavors!

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