Use of Text Reminders to Reduce Newborn Hearing Screening Loss to Follow-Up Rates

ROUGH EDITED COPY

2015 EHDI Annual Meeting

Topical Session 8

Coe Room

USE OF TEXT REMINDERS TO REDUCE NEWBORN HEARING SCREENING LOSS TO FOLLOW-UP RATES

3:45 p.m.

March 10, 2015

CART SERVICES PROVIDED BY:

ALTERNATIVE COMMUNICATION SERVICES, LLC

PO BOX 278

LOMBARD, IL 60148

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This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.

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> KARYN STOREY: Hi. I'd just like to start by introducing myself. As you can see, I am a student, but I also have been working with the Utah State Department of Health in their EHDI Program on loss to followup for the last year, and I kind of have this dual role. I am doing this presentation technically with Stephanie McVicar, who is on the front row here, and Dr.White, who's on the back row, so we've got the whole room covered. You guys are good.

All right, so we'll just go ahead and start, then. So I wanted to start my presentation in a framework of quality improvement, because this was a PDSA project in the state of Utah, and when I first was when I first came up with this idea and suggested it to the EHDI Team, they said: Well, you should do a PDSA. I'm like: A what? So I thought maybe some of you out there may not know what quality improvement is and PDSAs so I'm just going to go over quickly what those are and then I'll tell you about our project that we did.

So quality improvement basically has this underlying premise that you can't keep doing the same things and expect a different outcome, and so you have to make change in the system in order to change the outcome that you want.

There are basically 6 steps in quality improvement project, the first is to identify the problem, and the people who could affect the outcome, and then you identify the needed change, and this needs to be a specific idea of something that you can change, and then as you implement that, you implement in little, small cycles of change, not one big let's make this statewide but start with a few babies, and go from there. And then you need to measure the outcome. It has to be measurable, because we don't know if we've done bad or good. At the end, you decide whether you want to adjust it or adopt it or abandon it. Sorry, I've lost my train of thought there.

So as I said before, it's not one big change, but it's little, small cycles of change, so you may start out doing three babies, and then you may go hospitalwide with an idea, and then maybe you'd go statewide after that, and you can have 10, 15 different cycles of change on the same topic.

So that in a nutshell is what quality improvement is about and we're all trying to make our programs better, and the problem that we had in Utah, which is probably a common problem all over, or else we wouldn't have a loss to followup category at all, is making contact with those families.

And specifically, new parents are busy. They don't have time to answer the phone sometimes. Sometimes they're just not inclined to answer the phone. Some of them have minutes minute limitations on their plans, and some of them are working mothers and so by the time we're trying to contact them, they're back to work, and during the day when we're trying to contact them, they're not at home.

We wanted to identify how big this problem was, and as I got this idea, I was just making a bunch of phone calls to families, and I made a phone call, and I immediately received a textbook: Who is this? And it got me to thinking, wow, maybe we're really not trying to contact these people in the right way. They don't want to talk. They want to text. These are young people, especially in Utah, where moms and dads are a little bit younger than the National average, they're young kids, and they're wanting to text. They don't really answer their phones.

And, in fact, I just talked to one of my fellow students today, who said, and I said, if you were to see a number that you don't recognize, would you answer the phone? And she said honestly, no, I wouldn't. And so that's what we're kind of up against when we're trying to follow up with these families.

So we counted the first 20 babies on my call list from 2013, and of those babies, 8 I was able to contact on the first call, or they returned my message. 2 took two calls or messages. 6 took three calls or messages, and 4 took four or more calls or messages, and I think that the most I have ever called somebody was, like, 7 or 8 times, and that's a lot of effort to get ahold of one family.

There's a lot of research on texting. It's pretty much universal. You can text in Ghana, you can text in El Salvador, you can text in thirdworld or firstworld countries. Pretty much anywhere you go there's texting, and here in the U.S., 95% of individuals 18 to 29 have a cell phone that's able to receive texts and they send an average of 87 texts a day. I'm a little bit below that. But I don't fall in that demographic, either.

There was a study in 2010 in New York that even among lowincome families, 92% of them had a cell phone that could receive a text in New York. And that was actually based on a survey. When somebody was actually looking through their data in a different urban population, it was 70% of parents on that database had still had a valid cell phone that could receive a text, and that's the Stockwell study there, and they actually used texting to get parents back for immunizations and they found that it did improve their rate of getting them back for the immunizations.

And I pulled that one because it's a really similar type of activity as our followup for newborn hearing screening. There was also a systematic review done in 2012, and that was studying outpatient clinics at hospitals in the U.S., Asia, and Europe, and the consensus of all those 18 articles was that texting improved the likelihood that the person would come to the appointment by 50%.

So for our texting project, we had a little bit of preliminary work. I came to the EHDI Team, and I suggested it, and they liked the idea, but we had to go through the legal channels, because we wanted to just make sure that as far as HIPAA and all those things that we had our bases covered, so we obtained permission from them. And then the next step was to find a service to send those texts. And there are hundreds of services out there, but they kind of all fall in about 5 different categories.

There's one category where you upload the data either to them or to an online application, and so that's one model. You can do automatic data access, and that's where the service actually goes into the hospital's scheduling software and extracts the information that they need to text that family. There's a third one where the scheduling system itself has the capability to send texts.

And then the fourth is where the service actually uses the State or the hospital's own phone system to send those texts. And then the final one is the one that we chose, and that's an online application, and the reason why we chose this was because it was easy, for one thing. It was very simple. The interface was simple. And it was easy to get past, or to get approved, by the hospital IT Team, because when you're using an online application, they don't really have to worry about it as far as their IT.

And because it had secure socket layer encryption, which is basically the same thing that they use for online banking, and it's the same thing for those states that use Hi*Track, it's the same technology that protects the data in Hi*Track, and so that was a positive, too.

And then finally the expense. It was $9 a month, so it was very inexpensive option.

Oh, I want to go back here. So the graphic right there is the front page, or the home page, of that application. Basically, the nurse or whoever screened the baby would have to enter three things: The baby's name, the phone number, and the appointment time. And then they would schedule the appointment, and that's through this screen, and there's several different options in this particular software.

You can schedule it now or immediately. You can schedule it a certain number of days before the scheduled appointment, or one time at a specific time, or you could do a repeating series of texts. So if you wanted to keep texting this person every week until they finally came in, bloke down, if you wanted to just break them down, you could go ahead and set that up and the system would do that automatically and no human intervention would have to happen.

So for our texting project, we decided to start kind of small. We chose a small hospital in rural Utah. It was one that had a fairly high loss to followup rate, and we met with them, and we discussed the protocol that I had come up with previously. That's a key point for later.

And we decided that we were going to do this texting protocol for 2 months, and we figured that that was going to be about 5 babies for this hospital, because they are small.

So the protocol which I thought was a thing of beauty, by the way, we were going to schedule the appointment while the mom was still in the hospital. We were going to sign the texting permission form, and then the 24hour reminder would go. And then if the family missed the appointment, we would do two reminders: One day after, and two days after they missed the appointment. And then the State would start texting once a week, one week after.

So that was the protocol. I thought that there was going to be nobody that would be missed with that. This is actually the form that we used. It's a little hard to see, probably, from the back. It's actually kind of hard to see from right here, but basically, they entered they wrote their name on it, and they checked a box, whether they were willing to receive texts or not. And we tried to make that as simple as possible.

And then we also made our texts as simple as possible, just very simple texts, and we purposely did not put any personal Health Information in those texts, so that HIPAA would not be an issue at all, and so basically we've got hospital name, you've got an appointment tomorrow, and call us if you need to reschedule that.

So for the PDSA, number one, not one baby was followed through on the protocol. And that's where we realized, or I realized, that I had made a mistake. I had made this wonderful protocol, and the hospital seemed like they were all on board, they were so excited and everything, but the problem was that excitement doesn't mean that they have any resources to allocate towards that, and this hospital had one parttime volunteer nurse who had or she was coming in maybe once or twice a week at the most, and so she wasn't there when the babies were referring. And so my protocol didn't work for them.

So we learned from that that it's really important to involve the hospitals as you're setting up these protocols. You need to find out what's going to work for them.

And then, of course, training and support is the key. So looking at our PDSA cycle again, we planned it, we did it, it obviously was a failure, but we still felt like there might be something to save here, and so we decided to try and adjust the protocol and see if we could get the hospital to do it.

And so we called the hospital, and the nurses agreed that they would call an EHDI staff member, which was actually me, and they were just calling those names in to me with the appointment date, and then we followed the protocol just the same way. And so 3 babies were referred during the second PDSA cycle. That cycle was cut short because this hospital decided to go with outsource their screening program.

And so right in the middle of the PDSA, but before that happened, all 3 babies returned for their original screen that received a text so this was a little bit more encouraging for us. And but we obviously wanted to do more, and we wanted to see if the hospitals could do it on their own without having a State person receiving that phone call.

And so we decided to contact Christine Osborne, who is a thirdparty provider of newborn screening. She oversees 8 hospitals in the state of Utah. And she had already implemented, just coincidently, about during the same during that first PDSA time frame, she had just implemented her own protocol for texting in her hospitals, and her protocol was just a little bit different. She scheduled the rescreen at the time, while the baby was still in the hospital. But at that time, she would just say, we'll either call or text you the day before to remind you.

So she would call the number the day before. If she didn't get ahold of them then she would send a text. And we asked her to count 20 of her babies, and 8 of those answered the phone on the first ring, or the first time. And so that left 12 that were texted, and of those 12, 11 of them returned or responded and returned for the rescreen, and so you can see that where she would have gotten ahold of 8, now she got hold of all but one.

But we thought, you know, at the end of this one, we thought: That's looking really good! This is encouraging. But Dr.White is never satisfied.

[ Laughter]

And so he said: You need to do that again. And so I called Christine, and we asked her to count another 30 babies this time.

And so and this is our PDSA number 4. And she answered the or 8 of those answered the phone again, and so she ended up texting 22, and of those, all 22 responded, and she said that all but one or maybe 2 responded immediately. And to me, that is huge, because she only got 8, but 22 responded. And so for whatever reason, they weren't answering their phone, but they could respond to a text.

And so where are we now? We're on PDSA number 5, and the next step is obviously to introduce this concept into other hospitals, and work with them to make protocols that will work in their programs, their newborn hearing screening programs. We have one additional hospital that's come on, and we're working with a few more. And we want to even work with more, and I think that that will the last 30 babies came in a week ago, and so we haven't actually had time to address this to all the hospitals, but I do feel that as technology goes forward, it's really important that we keep up with it, and we don't keep doing things the same way that we always did.

We need to adjust and adapt, and we need to contact them in the way that they want to be contacted, or else we can't be successful.

And so does anybody have any questions for me?

[Off Microphone]

You know what? That's dropped, because sort of. Sorry, she's asking if I still, if we still use the permission forms.

And we aren't actually using that, because the Christine Osborne, she doesn't use it. She doesn't feel the need for it. We did it mostly so that the State EHDI Team could follow up with texts, as well, but as you can see on this last slide, there were no followup texts by the State, because they all came in.

Back here, the red.

[Off Microphone]

I don't believe that she did ask why they didn't answer the phone. That would be a good thing to do maybe next time.

Yeah?

[Off Microphone]

As far as for the last 30? The first ones, that was the whole reason for the optin. I'm sorry, repeating the question again. I can learn eventually, you guys.

So she's asking how I got around the issue, or how we got around the issue, of people who are charged for each text that comes in. And there is an optout button on the texting service. Of course, that's after the first one, so they would obviously be charged for that one. That was the purpose for the permission slip in the first place, but at this other hospital, they didn't use it, or at the 8 hospitals, I mean.

[Off Microphone]

Yes, it does, and you can print out reports and oh. She's asking about the online application. And whether it saves the texts that have sent, and it does give you a report on whether it went through successfully, as well.

One thing I did find out is that sometimes it tells you it went through successfully when it didn't actually, and that was just as we were playing around with it before the PDSA started. We realized that if I put my home phone number in, for instance, as a text, that it told me that the text was sent, but it didn't indicate reception of that text.