ROUGH EDITED COPY

UTAH STATE UNIVERSITY – CASEY JUDD

EHDI 2019 – TOPICAL SESSION 6, 7, & 8 – INTERNATIONAL F
MARCH 5, 2018
2:15 P.M. ET

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	(Writer standing by.) 
>> SPEAKER:  I'm just waiting for my room monitor to give me a thumbs up to start.  I'm just excited to tell you about this project, because this project has been two years in the making.  We have the thumbs up.  Thank you for everybody joining for this session, and first of all, you know, thank you to all of my EHDI PALS members, including my colleague, Steve Richardson, because sometimes, he gave me very, very good educational communication angle to look at.  So, today, what I'm actually trying to do is to tell you, this app is live, it is in the Apple store and Google Play, and I'm going to walk you, today, how to actually download this app, and first of all, I need to actually, um, tell you a little bit about this project, which is two years in the making.  So, a big acknowledgment, it literally takes a village to actually build an app, a whole village.  These are all the village members, all the way from, all the, you know, state EHDI coordinators, Hands & Voices, um, CDC, University of Maine, and NCHAM, a shout‑out to NCHAM, and ASHA.  ASHA gives a lot of manpower to us too.  They are very much vested in this project.  
Okay, here's the brain behind this concept.  Craig Mason's son, I know his parents are extremely proud of him, and I actually got his permission to put the photo up, and he was the first person to actually come up to me to talk about this concept, so that was two years ago, and he had this concept in his head, and the person who drives this passion is this little kiddo.  So, why do we do an app?  I don't think I need to go into details to explain to everybody why.  I mean, smartphones, let's face it, they are a member of our household.  Would you agree?  I mean, they are literally a member of our household.  We interact with our smartphone, right?  From this interaction, we sometimes get information, assessing this information at the tips of your finger can confer a sense of empowerment, and when you learn something new, you find something interesting, it demystifies something or, you know, a concept that you were unfamiliar before.  So, smartphone is an obvious fix, and I think it should be used and much more used in EHDI, at the hands of at least the parents, and maybe an EHDI coordinator, although I don't know what the app would look like on an EHDI coordinator.  
So, this is available for Apple and Android.  However, I want to first clarify certain things, and why I actually put this slide in, because when we were doing a lot of, um, testing and also explaining to our partners, when they want to partner with us to pilot this, they sometimes kind of got confused, so is this app EHDI PALS?  So, I said, okay, we need to explain EHDI PALS is not the app, the app is a project that the EHDI PALS took on as a whole team.  So, EHDI pals stands for pediatric audiology links to service, and it is an actual website, allowing parents to search for audiology clinics, and currently, we have approximately about 4,000 audiology clinics populating the EHDI PALS, and we included all the territories, so right now, the only territories that we don't have very good is probably the U.S. Virgin Islands.  Even Puerto Rico, we had the audiology clinic but their data in EHDI PALS.  So, that's publically available since 2014, and there's a back‑end information portal, allowing EHDI coordinators to actually get back‑end facility data.  Now, and I have to, um, you know, give a big, huge thanks to my center, um, both EHDI PALS and the app won the 2018 CDC national center on birth defects and developmental disability communication award.  
So, let's figure out, you know, developing the app, the process.  So, what we did is this; conceptually, we took the screening diagnostic early intervention, breaks it down into discrete, um, series of questions, and these questions is used to actually assign the actual logical sequence for the algorithm that needs to build into this platform.  So, for example, at the open screen, obviously, we need to ask where the parents actually reside.  Why?  You know, the actual state drives, sometimes, the next step, because some states do not allow a screen, so if it's a state where the screen wasn't part of the protocol, you cannot show a re‑screen sequence.  It would be wrong, it would be incompatible with the state's protocol, so it has to be clearly defined, and then it should be jumping to the diagnostic sequence, and you know that, um, EHDI is timed one‑three‑six, so all those prompts for the parents are timed concisely, because if they're too soon or too late, it's not going to help them to navigate the system, and I'm going to actually illustrate in my next slide some of the screen‑shots to show you an example of the sequence.  Now, and one of the things that we came up with when we were doing parent testing is some parents were actually very concerned about the information, they are entering very private information in there, in their phone, and they're obviously very concerned about someone trying to snatch this data somewhere, and we have to reassure them, actually, any information entered in this smartphone, it's purely within the smart phone.  Unless they actually share it with anybody, nobody can actually get at that information, unless they actually sent that information to somebody else, so it is something that, it is important to understand, and particularly for users, that the information is so private that, you know, it's up to you, if you want to release it.  If you don't want to release it, it's in your cell phone, it goes nowhere.  Here's several screen‑shots.  
Okay, so, as I recall, this, um, the first couple of screens is the screen‑shots for the opening sequence to determine whether the child is actually going into a re‑screen sequence or diagnostic sequence, so it begins with the child's name, the date of birth, and the state where the parent is residing.  So, depending on the state, if it matches to a state that does not screen, the state is going to trigger that, that it is a hearing test re‑screen, illogical sequence, so the hearing test is going to pop up, so the parent is going to see questions, okay, has your child had a hearing test yet?  Okay, they choose the right, a choice, and that choice triggers the next one.  So, the next one is, um, in this case, it's saying, no, um, I haven't had the hearing test done, and it's not scheduled, so based on that choice, the sequence next to show up is, um, remember, um, oh, it's missing the baby's name.
(Laughing.)
>> SPEAKER:  Because I know I have a baby's name on there.  Anyway, so, if they enter, say, Johnny, okay, remember, Johnny did not pass hearing test and needs a hearing test, and then the next one is experts actually do recommend children who did not pass, you know, that needs to have a diagnosis within three months of age, and you see that some of the terms are actually underlined.  Hearing screen, hearing test, any of these words underlined, when they tap on it, it's going to open up an explanation, what a hearing test is, what a hearing screen is.  So, let's go to the next sequence.  Okay, this is a hearing test sequence, and what this, what I want to share with you in this sequence is some of the information that they can also access.  So, it's not just guiding them, it's also pushing out information to them.  Like, for example, um, do you need help?  And you can actually go to these organizations for help, the state EHDI coordinator and Hands & Voices, and the state newborn hearing screening program, when they hit that, it's going to link to NCHAM's state EHDI coordinators list, and they can see, you know, find their EHDI coordinator's phone number and try to contact them that way, and I think, you know, in the next one, you see three, um, I can't even see that clearly, so, and there are more information for them to click, like, so, download, oh, download state's hearing directory, and, like, go to Hands & Voices and, um, yeah, and then the last one is early intervention, so we also have, um, explanation on what the intervention is, if they click that early intervention, so it's going to display what's the definition of early intervention, and whenever they're unsure on the early intervention sequence, we actually direct them to actually go ahead and contact a TA, and they actually provide, you know, advice to parents.  Okay, before we piloted, we actually tested this, um, we recruited parents, and thanks to Hands & Voices, they recruited parents with various different experiences with the navigation, navigating the EHDI process, and this, they tried it all out, and not a single one of them hated the app.
(Laughing.)
>> SPEAKER:  And they actually don't even find the app annoying, because the app, you know, when we were designing it, one of the things we were worried about was it could be very annoying, because, for example, you know, when they click that, no, it's not scheduled, but I have not had an appointment yet, it kind of calls the app, but the app will let the parents off the hook, because within a week, if they don't touch the app, it's going to have a prompt that shows up that says, hey, parents, you have unfinished business.  Okay, so, every week, if they do not touch the app, a prompt is going to show up, that you have unfinished business, and this is the one thing that we were kind of worried, whether the parents were going to find it really annoying, and luckily, none of the parents who actually piloted feel like it's annoying, but again, they're piloting it, so maybe they just don't want to give us feedback, but, no, we really were very, very glad that everybody loved the app.  
So, after the pilot, we actually recruited parents to pilot it.  No, hospitals to pilot it.  Thank you to Massachusetts and Virginia.  We have five hospitals who joined to actually pilot this app.  So, I am going to show you the biggest reason why we want to do the pilot.  It's this, because the app begins with a did not pass hearing screening.  It has to begin from the hospital, that's why it is important to know, if we ask the screeners to hand an instruction sheet to every parent whose babies did not pass or allow them to put the actual, the app download instructions into this chart, it's burdensome, and I'm very happy to say that not a single person finds that that is burdensome.  Not a single one of them.  They're happy to actually oblige to do that.  They even think that, you know, that we didn't hand out enough, so we'll think about it.  All right, so, during the pilot, how many people downloaded?  Okay, so, 164 did not pass, 88 downloaded, 51 from an iPhone, 37 from Android.  So, we have 54 percent of parents downloaded the app.  Now, some high‑level characteristics of iPhone and Android user, this is information you can easily find in Google, just Google it, there's tons of literature on this, and, um, recall, we have more downloads from iPhones.  As you see, iPhone users are more likely female, so it makes sense.  So, it's absolutely, like, dovetailing what's the high, you know, the general demographics is currently, you know, with smartphone users.  
Now, this is very interesting information, and before I jump in to interpret this, I want to frame this in a proper way for you to understand what this means.  Now, the app will offer the parents a choice to delete, but it does not occur.  That prompt will not occur until three conditions are met, or one of the conditions are met.  One, either the child passed re‑screen.  If they passed a re‑screen, the prompt will pop up to have the choice that you want to delete the app now, congratulations.  A second one, it will trigger the prompts to say you can delete it now, is if they have normal hearing tests.  The third condition is they have hearing loss, but yet they already, um, have a referral to EI.  If any of these three conditions that the parents check, some way or all the way, you know, through the whole entire sequence, then the app is going to pop up and say, congratulations, parents, you successfully helped Johnny navigate the entire EHDI process, here's the choice, you can delete the app now, or you can keep the app.  If you keep the app, you know, there are helpful information still in this app for future references, if you keep the app.  So, having said that, so, this is how many, um, parents actually still have the app; 40 out of the 88 still have the app.  It could mean that they like the app, they're going to keep it, or, two, they're still navigating the EHDI process, they're still using the app, they have not gone to the end yet, and third is they tolerated the app.
(Laughing.)
>> SPEAKER:  It could be a possibility, they tolerated the app.  We have apps that we install, and we just kind of let them sit, right?  But then again, recall, you know, the app will not let parents completely be dormant, because it has prompts, every one week, if they don't touch the app, the prompt is going to pop up, that you have unfinished business.  All right, and I think that's it.  Okay, you know, take out your smartphone right now and download the app and try it.  I want to be here, you know, for you guys to play around with it and field some questions.  This is the one presentation that, actually, I don't mind cell phones being on and smartphones going off and things like that.  So, EHDI is here in the title, and the logo is EHDI PALS, and what I want, you know, anybody who's interested in bringing this to the hospital's attention and want the hospitals to actually maybe help along to push this app out to parents, um, contact me, Sarah Stone from Massachusetts.  There's another presentation right now, the Virginia EHDI coordinator, they'll be happy to share with you how you can make that happen in hospitals.  Yeah, question?
(Off mic.) 
>> SPEAKER:  Okay, originally, when Han actually designed this, he wants to offer parents a feature, allowing them to send an e‑mail to EHDI programs.  The problem is we decided not to go there, and the reason is we are very concerned that there are some states that have a huge birth cohort.  Some states are smaller, they might be able to receive parents, you know, SOS e‑mail, but for a large state, it could be quite overwhelming, so we decided not to go there.  So, instead, as a compromise, we basically, you know, planned that resourcing, that if you want to contact your EHDI program, here's the link that you go to, you click it, but it is always in the back of our head, that this app could actually allow parents to contact their EHDI program.
(Off mic.)
>> SPEAKER:  Yeah, to date, that is, yeah, because we are dependent on how many kids fail, because the actual pilot, the number, depending on how many actually failed in that hospital, so if we have a small rural hospital that only birthed, like, ten, you know, a month, and how many of them actually failed, um, so, that's why.
(Off mic.)
>> SPEAKER:  Do you all want to start another project to translate this in Spanish?  I know, we want to translate in Spanish, and there are some parents who actually ask us to translate into Spanish.
(Off mic.)
>> SPEAKER:  Oh, we follow all that.
(Laughing.)
>> SPEAKER:  We decided not to, so meaning that, you know, if they have two twins, they almost have to have two smartphones.
(Laughing.)
>> SPEAKER:  One smartphone for twin A and another smartphone on twin B.  What happens is, sometimes, both twins could have the same appointment, but sometimes, it could be a different appointment, so that's why we said we don't want to confuse the parents.  Okay, now, um, does Johnny have a Thursday appointment, or the next Thursday appointment?  You know, it would get really too confusing, but we did think about that.  We did.  So, if they have quadruples, they will have five smartphones.
(Laughing.) 
>> SPEAKER:  Yes?
(Off mic.) 
>> SPEAKER:  Yeah, the appointment, we ask the parents when the appointment is.  If they say, yes, I have an appointment, so the next sequence is when is your appointment?  They enter it, and it's going to sync to their calendar.  It's going to remind them, yeah, in two days, you have an appointment coming up.
(Off mic.)
>> SPEAKER:  Okay, so, the prompt is going to occur the day after the appointment.  So, the day after the appointment, the prompt is going to say that, um, you know, Johnny should have his appointment for the hearing test, and then the prompt is going to pop up, what is the test?  And we ask them to just click that prompt, to open it so that they can input the hearing test results.  So, if the hearing test is normal, then, congratulations, you're done, or, um, they found a hearing loss, well, then, the next sequence will begin.  The EI sequence begins with there are many interventions, so that's how it is.
(Off mic.)
>> SPEAKER:  Actually, I didn't even know that.  That's good information.  I didn't know that.  Wow.
(Off mic.)
>> SPEAKER:  Oh, yes.
(Off mic.) 
>> SPEAKER:  Um, so, all the parents that actually, um, we recruited, you know, didn't find any of the wording really confusing, and, two, when we actually developed the app, we actually was cognizant about that.  There are certain terms we don't do.  As you recall, we have not used the word audiology at all, not anywhere.  We keep saying hearing, hearing test, hearing screen.  So, you know, we're building, making extra efforts to actually be sure that technical terms, even if we have used, it's underlined, and they can actually see the definition of that technical term, like, for example, early intervention.
(Off mic.) 
>> SPEAKER:  No, because not every single state does follow‑up.  That would be really super annoying.  I mean, I'm sorry, the app will be following this family for up to a whole year.
(Laughing.)
>> SPEAKER:  But that's a good thought though.  I mean, yeah, that's interesting.  Yeah?
(Off mic.) 
(Applause.) 

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