A New Research Paradigm?
In Part I of this post, we discussed a recent article in Annals of Emergency Medicine describing lacerations and embedded needle injuries caused by epinephrine auto-injector devices. The findings were interesting and I encourage you to read about them. Here in Part II, we’ll discuss the other unique aspect of this work: the way in which the data was collected.
Rather than using traditional methods of data collection for a clinical study, Dr. Brown and her c0-authors leveraged the power of social media networks to find cases of injuries caused by epinephrine auto-injectors. This makes sense; clinicians prescribe epipens, but are rarely around to witness when mishaps occur.
I recently had the pleasure to interview Dr. Brown by Skype regarding her work. Here are excerpts from the interview, which I am currently preparing as a podcast segment for HIPPO EM.
Me: What inspired you to get on social media to begin your investigation?
Dr. Brown: [Dr. Brown relates the story of a personal case she saw of this injury.] After my colleague told me she had a case of a leg laceration [caused by an Epipen] too, I was suspicious this was much more widespread than previously suspected.
I was not really using social media at the time, and fairly naively joined No Nuts Moms and asked the (at the time) nearly 10,000 food allergy moms about leg lacerations [from epinephrine auto-injectors]. From there, I received many other reports.
It was also the beginning of an unexpected journey into the world of food allergies in general. These moms seemed surprised to find they had the attention of a pediatric emergency physician and wanted to tell me their stories and ask why emergency care was so inadequate and not in step with allergist recommendations for the management of anaphylaxis.
My first reaction was skepticism, but the more I listened, the more my jaw dropped and the more I realized that this is an area of emergency practice that has fallen out of step with evidence and guidelines and is sorely in need of more education and awareness. You would be shocked to hear the stories of children in unquestionable anaphylaxis not receiving epinephrine, and being put at substantial risk, both in the prehospital and emergency care settings.
In addition, I became increasingly aware of just how hard it is to live with food allergies; how these children are often bullied, how they are not well supported by the school system, how many of them develop anxieties around eating and the risk of reactions. I have become passionate about trying to be an advocate for them, about wanting to do what I can to make their lives better, and to make sure they know that when they call 911, they will be in well-educated and competent hands. The patient/parent shouldn’t be the most well-informed person in the room. We need to be better informed and do our jobs better.
Patients with allergies belong to Allergists, but anaphylaxis belongs to emergency providers–just as a patient with a seizure disorder belongs to a Neurologist, but the emergency physician needs to be competent in the care of the acutely seizing patient.
Me: How long did it take you to gather the data you needed to draw your conclusions?
Dr. Brown: My [index] patient’s injury occurred in the Spring of 2014. I posted on [a pediatric emergency medicine list serve] late May 2014 and I first posted on Facebook on July 2, 2014. It took me a while to get from there to publication at least partly because this foray into allergy research came unexpectedly when I was busy with other things. I was also starting from scratch and spent many many late nights researching and educating myself on allergies, anaphylaxis and the history of auto-injectors. I had local allergy moms drop off stacks of used auto-injectors and I was like a mad scientist in the evenings, taking them apart and firing them down the halls of my office! (I don’t think I sent you this one, for example. (In an earlier unpublished version of that one, I screamed when it fired, haha!)
Me: Were you surprised by the volume of response you received, and the willingness of parents to share their stories/photos?
Dr. Brown: Volume – No. I think this is the tip of the iceberg. The bulk of these cases come from one listserve and one food allergy group, so there must be many more out there I haven’t heard about. I keep hearing about more, through social media. Willingness – not really, not now that I know these moms and what they deal with every day. I feel like I am one of them now, like these are MY allergy moms, and I think they know that. They ask me questions about auto-injectors or other things and I do my best to answer them, hunting through the evidence or guidelines, or taking devices apart to figure out the answers.
I feel for their struggle, and particularly for how poorly supported they are by industry, by society, and by the medical community. I understand the challenges they face and the burden they carry to keep their children safe. They call companies on a daily basis to check the safety of every product they buy. The read every label of every item they buy in the store EVERY TIME. They watch their kids like hawks. They have constant conversations with schools, other parents, sports groups. It takes endless energy and effort to keep their children safe. This is very hard work. They are very motivated to try to make their lives better, including having better auto-injector devices that are smaller, safer, more temperature stable. They and their kids deserve that, and I want to do my part. They know I am on their side and so they are willing to help me. It’s a two-way street.
Thanks to Dr. Julie Brown for the interview and education!