App for Parents of Kids with Severe Allergies

[twinturbo]

Jim, is your goal to develop products and/or services to market for parents of children who have life-threatening allergic reactions? or was the goal to develop an app, any app, the driving force with the customer profile variable?

This isn't a morals quiz I'm a huge supporter of innovation and the entrepreneurial spirit. A more efficient approach would be to build a profile of your customer and assess where the needs are not being met. The risk you would be taking on is huge and impractical. Neither is an unknown app from an unknown developer likely to make waves even if there is some benefit--cross promotion with a familiar, trusted name would be paramount.

Go with the momentum of your intended customer who must carry their own EAI at all times. Reinforce that protocol that is endorsed by any credible source. Trim back the lofty goals of an app to what would be common sense and efficient.

Have you thought of maybe an 'egg timer' alarm model where the user can preprogram an alarm at desired intervals that prompts the user to identify where his or her epinephrine is? The app's key feature could be that the prompt keeps coming up until the location (in pocket, in purse, in carrier) is inputted. That might be of assistance to anyone, particularly someone new to the idea of carrying epinephrine. If it's an app you're selling you would be wise to consider a portion of each sale go to FARE for cross promotion purposes.

But that's not the point. You need to understand your customer first and develop to their needs. What that may be through an app is what you should discover. For example, I make great use of ER finder. It lets me know what medical centers are near to me at any location. That is the sort of profile you'd need to build by someone who knows how to construct good surveys or people who have the time and skills to build netnographical profiles of posters, a few Q&A is fine but it's not going to give you what you need for solid development.

[PurpleCat]

I'm working on an app for parents of kids with severe allergies and I was hoping I could get some thoughts on the concept.

In an emergency the app lets people alert nearby off-duty EMTs, medical personnel, and other responders who can quickly provide aid.  In addition, this builds a network of people with EpiPens who can be alerted if someone nearby is going into anaphylactic shock. 

I would love to hear your thoughts whenever you have a free moment.

Thanks in advanced everyone!
-Jim

Just my point of view:

As a parent of a child with allergies, I would not use an app during anaphylaxis.  My child and I both carry epinephrine injectors.  There is no time to think or to wait for anyone else to take over.  Epinephrine and call 911 immediately is what it takes to save a life.  An app would be just another step and delay.  Why would it be better than calling 911?

Now, having given my child epinephrine and gone in the ambulance to the hospital this Spring, I thought where and how in that process would an app help me as a parent.  An app that would provide the personal data about my child's medical history, allergies, etc..... would have saved me from answering endless and repetitive questions both in the ambulance and in the ER when clearly my focus needed to be on my child and what was happening.  I missed a few details and had to catch up later because I was so frazzled and scared.  That kind of app would have been helpful.

[SilverLining]

Hi Jim, I'm not sure how/where he stores his medical supplies.  He works for a private company, usually at concerts, amusement parks, etc.  he doesn't respond to 9-1-1 calls (thought he's qualified for that job) and he doesn't always have an ambulance.

[GoingNuts]

I'm thinking something like this might have broader use, kind of like a "LifeAlert" pendant for senior citizens.  Push one button, multiple alerts are sent out - police, ambulance, MD's who are listed as contacts, and ICE contacts.

Am I reading you correctly?

[Macabre]

I hate to bring this up. It sounds so callous. And who knows what any of us would really do if we saw someone having anaphylaxis in a restaurant.  But unless there are Good Samaritan laws in our state (or country--many here live in Canada--we could be liable for administering an Epi or even handing our Epi to someone else.

Will this app be free?  How are recouping your costs for R&D?

And do you have a food allergy?

Most of the businesses I patronize that help our community started their business because they are dealing with a LTFA.

I am quite  technologically advanced, compared to the general population (work in html almost daily, tweak the CSS of my org's website, etc.).  I have had a smart phone since 2007 and use my current one almost to the exclusion of my laptop. I do use apps that I find helpful.

But I have not downloaded any food allergy-related apps (with the exception of a game so I could review it here). I don't know why. I've seen them. I guess I don't know that any I've seen would change things for me. I am probably not representative of your target market though. 

Also--the way an epipen is stored is a huge consideration for this app. There is such a small temp window. It's not just heat but cold.

Also--different EMTs handle reactions differently (as so ERs). I had anaphylaxis in December. The ER made that diagnosis. The EMT did not. The director said I did not have hives and did not have trouble breathing.  Well symptoms differ. But the fact is I did have symptoms that disappeared after injected myself with Epinephrine. And some came back after I was at the ER (biphasic).

But my insurance wasn't going to pay the ambulance company because the EMTs said I did not have anaphylaxis.

I'll link to a study showing that EMTs often do not recognize anaphylaxis. 

I think you are trying to do a nice thing. It might be a helpful thing. I would not use it personally. I would administer Epi, lie down with my feet above my heart, and call 911.  Period. But that's me.

[Sneaker]

I am not sure how this app could or would work but in the early stages it seems very interesting.

But I also would like to comment about some posts stating that anyone who is serious about their food allergies, self-carries and even knows how to self-administer their Epipen.  There are people, like my teen, who are serious about their food allergies, that have delays, special needs or other issues that prevent them from self-carrying and self-administering.  They watch what they eat, but can not handle carrying their own meds.

[hedgehog]

Also, teens are less likely to carry their epi than other age groups.  I would think that applies to teens who "know better."  Maybe teens whose parents think they carry their epi everywhere.  I would think maybe parents might want something as a back up, in case their kid does not have their epi when needed.

[Macabre]

Good points.  Teens may be more likely to use an app like this. 

[Macabre]

Ah--I found the study I was looking for. It's actually rather scary.

http://www.ncbi.nlm.nih.gov/pubmed/22712745


Anaphylaxis knowledge among paramedics: results of a national survey.

Jacobsen RC, Toy S, Bonham AJ, Salomone JA 3rd, Ruthstrom J, Gratton M.
Source
Department of Emergency Medicine, Truman Medical Center, University of Missouri-Kansas City School of Medicine, Kansas City, Missouri 64108, USA. ryan.jacobsen@tmcmed.org
Abstract

BACKGROUND:
Very little is known about prehospital providers' knowledge regarding anaphylaxis care.

OBJECTIVES:
The purpose of this study was to evaluate how well nationally registered paramedics in the United States recognize classic and atypical presentations of anaphylaxis. We also assessed knowledge regarding treatment with epinephrine, including dosing, route of administration, and perceived contraindications to epinephrine use.

METHODS:
This was a blinded, cross-sectional online survey of a random sample of paramedics registered by the National Registry of Emergency Medical Technicians that was distributed via e-mail. The survey contained two main sections: demographic data/self-assessment of confidence with anaphylaxis care and a cognitive assessment.

RESULTS:
A total of 3,537 paramedics completed the survey, for a 36.6% response rate. Among the respondents, 98.9% correctly recognized a case of classic anaphylaxis, whereas only 2.9% correctly identified the atypical presentation. Regarding treatment, 46.2% identified epinephrine as the initial drug of choice; 38.9% chose the intramuscular (IM) route of administration, and 60.5% identified the deltoid as the preferred location (11.6% thigh). Of the respondents, 98.0% were confident they could recognize anaphylaxis; 97.1% were confident they could manage anaphylaxis; 39.5% carry epinephrine autoinjectors (EAIs) on response vehicles; 95.4% were confident they could use an EAI; and 36.2% stated that there were contraindications to epinephrine administration in anaphylactic shock.

CONCLUSIONS:
Whereas a large percentage of the paramedics recognized classic anaphylaxis, a very small percentage recognized atypical anaphylaxis. Less than half chose epinephrine as the initial drug of choice, and most respondents were unable to identify the correct route/location of administration. This survey identifies a number of areas for improved education.

PMID: 22712745 [PubMed - indexed for MEDLINE]

[Macabre]

It's the atypical presentations I worry about, as I see fewer and fewer typical symptoms as my son gets older (he's 15 now). Still, for typical presentations and for those who use an app like this, it could be helpful.  Clearly it's better to administer epinephrine sooner than later.  The question is condition of the auto-injector.  But in a life or death situation, I myself would try any epipen on hand, as long as the liquid didn't look yellow.  Also to consider: Good Sam laws, or lack thereof.

[CMdeux]

Right-- and while you'd HOPE that a bystander would, in fact, use their own personal autoinjectors in a life-or-death situation... the reality is that for some people, that is a matter of leaving themselves WITHOUT epinephrine.

For some people, the costs of replacement would be too high, and for others it would simply be a matter of taking the time to replace them, but either way, there is more at stake there than a Good Sam law can cover.

I'm still not entirely sure what this app would do that can't already happen under the right conditions-- and does, actually, happen (this is not the first time, either) probably more frequently than is reported. 

People WILL offer aid if they know what they are seeing and have a way to help without endangering themselves.

[CMdeux]

I am not sure how this app could or would work but in the early stages it seems very interesting.

But I also would like to comment about some posts stating that anyone who is serious about their food allergies, self-carries and even knows how to self-administer their Epipen.  There are people, like my teen, who are serious about their food allergies, that have delays, special needs or other issues that prevent them from self-carrying and self-administering.  They watch what they eat, but can not handle carrying their own meds.

I'm not sure that I completely understand this.

Is this someone who is mature enough to be independent?  Or not?

I realize that there is plenty of grey area there, but it seems REALLY foolish to allow independence that is-- please pardon my bluntness-- illusory.

I do understand the worry and the 'pull' to allow normalcy as much as seems reasonable/possible, and how one sometimes plays the odds there in order to allow one-time events that one judges to be moderate in risk.  But is this poster seriously suggesting that the kindness of strangers is the safety net for this child when s/he is away from home??  (I'm sincerely hoping NOT.)

If such a person lacks the maturity to self-carry, then I'm not clear how a smart phone app would really be very helpful either.

What am I missing?

[twinturbo]

Amongst the FAS population here we do have kids with developmental delays and LTFA. Like me. I still would not use the app as presented at any point. I do make routine use of ER finder apps, stopwatch timer apps (to track reaction times) and photo apps to record minor reactions so the allergist may make use of them later or for accommodation negotiations. That's my spoken piece on the subject.

I would love to see one developed for MedicAlert to have our info at the touch of a button in the ER if it has not already been done.

[Macabre]

So in a restaurant where someone with a diagnosed LTFA were having a reaction requiring epinephrine, if they requested an EpiPen, I would certainly give them mine.  My co-insurance is $54.  I wouldn't worry about it if a life is at stake.

Some folks here pay $300 for a set of EpiPens.  I still can't imagine that someone would value a human life less. 

[CMdeux]

I can't either-- but-- assume for a moment that you are on vacation and you have not got a reasonable means of replacing your OWN child's epinephrine...

I'd sure hesitate before burning through all of my family's supply, in light of my DD's reaction history.  I mean, I probably would do it anyway... but it would be UNBELIEVABLY stressful to us to be without epinephrine for her for any length of time-- even an hour or two.