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EHDI
Malpensa ‑ 11:30 am CST Breakout Session
March 5, 2019

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CDC and Texas Epi‑Aid Collaboration
with  Ashley Satterfield‑Nash, Robyn Cree, Eric Cahill, Rebecca Bitsko, Cheri Grimm, Eugenia Dunham, and Doug Dittfurth 
11:35 am CST

    
    
   >> This is always the worst part of the presentation, the waiting right? We ready? Thank you. Well, good morning. My name is Eric Cahill. Up in front with me is Eugenia Dunham. She is the manager of newborn screening the oversees in part the Texas early hearing detection and intervention program. There are a lot of people listed on the dais up here. They are obviously not with us. But I think it's important to stress that this is a large‑group project. It wasn't just the two of us by any means. 
   >> ERIC CAHILL: The Epi‑Aid, I will talk more about what that is. But an Epi‑Aid is a program that CDC has and uses to help different jurisdictions look at better ways to solve problems using epideemlogical principles. This is a high‑level presentation. The findings that we're showing are preliminary. The report is still in the draft process. But this was from something that we did in the summer of 2018. Just to set the stage a little bit, in 2016, 11% of all infants in Texas or all infants born in the U.S. were in Texas. Texas ranks second nationally. 3.8 million roughly were reported across the U.S. 406,000 live births in Texas. 406,000 and change. Texas ranks second nationally ‑‑ I'm sorry. So, Texas ranks second nationally just behind California. Interestingly, 7% of all infants born with hearing loss in the U.S. were born in Texas. Likely there are more, but we just haven't been able to ‑‑ likely there are more who have gotten services or have hearing loss, but haven't been identified and that's part of why what spawned the work that we did with them. Of all the infants that didn't pass hearing screening, more than half were lost to follow‑up or lost to documentation. Let me point out here, we use the acronym on these slides LFU/LTD. Texas uses a different one, same definition, different acronym. In all of our printed and web publications, we use LFU. So, I just wanted to point out the difference. But in Texas, more than half of all infants identified were lost to follow‑up. So, 52% in Texas in 2016 compared to roughly 25% nationally. 
    Texas has been working on some things over the years, and I'm going to ask Eugenia to talk about that. 
   >> EUGENIA DUNHAM: I have been on this program for a long time. This was such an exciting project to be collaborating with CDC, because what it does, even though we know a lot of the information that has come out of this study, it really validates what we've already known, and there is information that we didn't quite know. So, this has been certainly something very positive and exciting for our state some of the things that we have been doing in the past to reduce lost to follow‑up and lost to document is we have regular bimonthly technical assistance webinars that is targeted to our early detection and early intervention programs in the hospitals where we go over best practices and the importance of documentation and any special needs populations that they might be working with like CPS cases. 
    So we've also continually looking at our MIS system that is hugely robust. It has to be robust to carry all of our babies over all these years. And we're constantly looking at places where we can improve the system to make it more customer‑friendly, to encourage all our providers to documentation ‑‑ to document the results. So, some of the things that we have done recently, very recently, is we've introduced an allergy reporting page. Unfortunately, our audiologists who are in very busy practices sometimes can be our worst offenders in terms of documentation. So, we really want ‑‑ and we understand that, because they are in busy offices. And also, there are some audiologists that might not see that many babies. So, they are mostly focused on adults. So, they forget how to report into our system. So, we have just introduced an audiology reporting page that will make it much easier for them. It's a click of the button. They have been used to faxing us information, so this reporting page kind of is like a fax. So, and then we have an ECI module. At two points we need to inform ECI, and that's at suspicious, at refer, and also in enrollment when a diagnosis is confirmed. So, instead of having the ECI folks having to proactively go into the system and find babies that were referred to them, they're notified immediately via an e‑mail. And then, of course, we have been working with Hands & Voices for several years now. And they help us work with the parents and identify ‑‑ they help us identify issues that we need to be working with the providers on. And also, for example, some of the PCPs, we are finding that are screening in their offices and they don't know the best practices. And the standard with PCPs are wait and see. We don't want them to wait and see. We want them to immediately be reacting and reporting. We have been doing some care coordination work with our interns. So we have a really solid internship program. And that, you know, since 2015, so every semester we will get interns that want to work with our TEDHI program. We are a very large state, so everything we do is pilots. So, when the interns come on board, we have to train them. We train them how to do care coordination, the importance of the 1‑3‑6 guide mantra. And they will go in and work with a set of babies that they work on throughout the semester. And make sure that they follow‑up with these babies and make sure they get to each point of care. 
    And then also we do one‑on‑one calls to audiologists and PCPs. 
   >> ERIC CAHILL: Probably about 52% are lost to follow‑up in Texas. And to help address this public health challenge is really an urgent public health need, the Texas department of state health services requested on the ground an Epi‑Aid from CDC on May 30, 2018. There was a formal letter written to Dr. Georgina Peacock. What an Epi‑Aid is, it involves small teams of epideemic intelligence service officers and other CDC experts who travel on‑site to provide assistance, and they do this domestic and internationally. A lot of times these involve disease outbreaks, and we know hearing loss is not a disease. But the thought is to use the same principles to see if they could solve this public health need in the same way. There were five objectives that we had for this Epi‑Aid. We wanted to understand some of the barriers related to lost to follow‑up and lost to documentation. That lost to documentation, the services were performed, the procedures were performed but not documented in the information system. We wanted to understand better some of the barriers related to reporting to the Texas EHDI program. We wanted to identify ways to improve completeness and timeliness of information reported to TEHDI. We wanted to identify some of the factors related to lost to follow‑up and lost to documentation, and finally we wanted to be able to outline some steps that we felt based on that data could help Texas improve their ability to identify all the kids and make sure all the kids get the services that they need. 
    Texas is broken up into 11 public health regions. We identified three. This was a three‑week on the ground ‑‑ well, that part of the project involves three weeks of on the ground work in Texas. We identified three public health regions. Two of the public health regions down in Brownsville and over in east Texas in Tyler, those two have some of the highest lost to follow‑up rates. 87.8% in Brownsville and about 80.6% in Tyler. And Austin, we chose Austin as well. That's where the TEHDI program resides. But we also wanted to ‑‑ we wanted to identify, you know, more of an urban region, a region with an average that more closely reflected across the state. So, that's why we chose Austin. What we did is we identified providers. Providers that were involved in screening. Providers that were doing diagnostic assessments. We talked to pediatricians. We talked to otolaryngologists. We talked to ECI providers. And ECI is Texas's acronym for early childhood interventionists. That's the Texas EI program. We talked to all of these providers. We did what we called semi‑structured interviews. We had specific questions we wanted to ask, but they were open‑ended. And they gave flexibility so they could really drill down into what these providers themselves thought of what the barriers were. This is just an example of one of the questions that was asked. Clearly this isn't a closed‑set question. If you think lost to follow‑up and/or lost to documentation is a problem, what specifically are the problems contributing to each? We recorded each of these interviews. They were about 30 minutes or so. And then we transcribed them so we could pull out the themes from each of the interviews. So, structured in that we had specific questions, semi‑structured in that we gave a lot of room in what each of the providers felt like was some of the barriers. We had specific interviews for each of the four categories. Physicians, audiologists, interventionists, screeners. 
    What we found, we did two weeks after the ‑‑ our on‑site work in Texas, we presented a very preliminary report we had done the transcriptions and pulled out some of the themes from the interviews. And we found from the interviews, 17 provider‑related barriers to lost to follow‑up and lost to documentation. And these were the eight most common: Lack of coordination among providers. Challenges with reporting system. 11 of the interviewees identified that. Lack of communication amongst the provider community. In some cases there was a lack of time. Nine individuals indicated that was an issue. Challenges contacting parents. Insurance issues. A lack of knowledge, and a lack of logistics. There was a ninth barrier that had two mentions, and that was logistics with the idea of lack of personnel to conduct this work. 
    We also identified some patient‑related barriers. 10 providers mentioned what they perceived as patient related barriers, and these were the three most commonly mentioned barriers: Problems with access to care. Insurance coverage to access amplification or intervention needs. And then a lack of knowledge amongst the families about what was available, the importance of obtaining that intervention. So, those are some of the patient‑related barriers that were identified. 
    We came up with some very preliminary recommendations in this two‑week report. We felt like it was important for the TEHDI program to think about increasing educational awareness among providers and parents. We thought another good recommendation was to increase the frequency of face‑to‑face outreach with providers. And then engage local stakeholders. I was in a meeting a couple weeks ago about a totally different unrelated topic. Someone in this other meeting, they used the term "force multiplier." I think when you engage local stakeholders, you're expanding your ability to reach folks. You're expanding your ability to reach providers, and you're expanding your ability to reach families.  In a state as geographically as large as Texas and as many births and families that need to be reached, that can be a real challenge. If you can multiply your forces, you can do a lot of good work. 
    As we dove deeper into the interviews and pulling out the themes, we came up with ‑‑ we identified six challenges. A little small to read, but I will talk about them. In no particular order, providers have a lack of knowledge surrounding reporting and best practices related to EHDI. Texas has a large ‑‑ challenge number two, Texas has a large geographic area and a large cohort that may contribute to their higher than U.S. average loss to follow‑up, loss to documentation rates. Confidentiality requirements. A fourth challenge is continuity across the continuum of care from the 1 to the 3 to the 6. Coordination among those providers. Number five, online reporting system is not consistently being used properly to adequately track the most recent or final status of infants who are deaf or hard of hearing. 
    And then insurance is a barrier to meeting the 1‑3‑6 guidelines. We came up with some recommendations. 
   >> EUGENIA DUNHAM: Did you skip a slide? 
   >> ERIC CAHILL: Here are the challenges. This slide is a little bit busy. We came up with some recommendations. In the left column, those are recommendations of the TEHDI program. And in the right are things we felt that CDC could do to assist the effort. Remember, this is a collaborative effort. What I wanted to show in the slide not so much for you to read each of the recommendations. But we wanted to make sure that each of the six challenges down the middle, we came up with a recommendation to address those challenges both from the Texas side and the CDC side. So, each one of those challenges has at least one recommendation to help solve that challenge. 
    On the TEHDI side, so the left side of the column, recommendation one was to increase educational opportunities for providers along the continuum of care. For example, create new or update existing educational materials, increase the number and expand the promotion of the webinars that they do. And then present the findings of the Epi‑Aid during planned outreach. Kind of like what we're doing here, but specifically in Texas. Recommendation number two, create regional advisory boards or champions groups. Probably more like a champion group with that idea of having force multipliers. Remember, Texas has 11 different regions. The TEHDI program is housed in Austin, which is kind of in central Texas. 
   >> EUGENIA DUNHAM: And we have limited staff. That is really important to emphasize that. 
   >> ERIC CAHILL: That is a challenge. That is a challenge. Recommendation three is changes to the online reporting system to make it more user friendly. Eugenia mentioned that some of these were things they already do, but we were able to validate with data. Number four is review Medicaid reimbursement language and policies and help remove that barrier. 
    Link with Medicaid claims data to help understand a little bit more the nature of the families that may be needing to access Medicaid and use that to help identify kids. On the CDC side, on the right column, one was to disseminate the results in collaboration with TEHDI. We're here today as one example. And share the findings throughout the scientific community. You know, every state is different. Every EHDI program is different and has different challenges. We think there are probably some challenges that cross state boundaries. Some challenges that are obviously unique to Texas. But there probably are some challenges and recommendations that would apply to a lot of states, so we want to make sure that we share that with others. Recommendation 7 was to explore the possibility of developing model screener contract specifications. One of the challenges in Texas is that a lot of the hospitals utilize ‑‑ I'm not going to mention any names, but they use screening companies to provide that result. Perhaps some model language about those contracts to help make it so that data sharing is a little bit easier. 
    And the eighth recommendation is to explore opportunities to collaborate with stakeholders and provide technical assistance. 
    This is another slide. I won't spend a lot of time on this. Same eight recommendations, but what we did is we wanted to show impact. So, the higher on the vertical bar, greater impact. But what we felt like was reasonable time frames to do that across the horizontal bar. Some of these ‑‑ and just to help Texas EHDI program prioritize what they wanted to attack first. Some things will have high impact but they will take longer to accomplish. So, we provided this slide to them in their report, in the draft report to help prioritize. I'm going to give it to Eugenia to talk about the next steps. 
   >> EUGENIA DUNHAM: I want to say whenever you have an outside entity come into your state and evaluate, evaluation is pretty scary. When you look at all of these recommendations and things that are wrong, you kind of think, well, we have been doing a lot of work all these years with very limited staff and we've accomplished a whole lot. So, it's important not to get defensive about what of the findings, as a manager, I think that's really important. Maybe all the findings aren't exactly accurate, but there are always things we can learn. And by no means I want to emphasize this is not a final report yet. It is over 80 pages, maybe 100. A lot more. And we're ‑‑ we are pouring through every word. That's just the team. We're not talking about upward leadership. We need to get to them, too. That's really important. But one of the things that I had angst about was the educational materials, because we've spent a lot of funds from HRSA on developing this complete array of educational materials for, you know, all the providers. ECI providers, audiologists, the importance of reporting to parents and all of that. And I'm saying what do you mean? We have to work on this again? Well, you know, we have been moving on to other projects like care coordination. And working, you know, calling each individual provider and working on the data system. And so it made me think, yeah. Maybe there is some information that we need to update in these educational brochures that we have. And then the other thing I asked my team, what do you think about that? They said well, it's really overwhelming. We have so many materials. That maybe providers aren't knowing which one to use first. So, it's all about learning. So, that's what I wanted to emphasize is really, we're going to be looking at the report, and we're going to identify what are our priorities? What do we need to tackle first? How does it fit into our ongoing projects? Like we are already doing learning communities, which we are calling regional summits. But do we need to tweak those regional summits? Do we need to make them even more local? So there's a lot of things that this CDC report can help us in crafting our plan going forward. And the other thing is I like in the report that they said CDC is going to help us? You know? They're going to continue to work with us to get some of this stuff done? So that was ‑‑ I was happy to see that. 
   >> ERIC CAHILL: I think it is important to remember that that's a big part of why we exist, to help states to do this. Let me make one final comment and I'll address a question. I know we're really close to time. You know, there is some published work ‑‑ when was it published? Last year, I think? She talked a little bit about the importance of helping policy‑makers, you know ‑‑ they need to do whatever they can to make transitions from one step to another through the 1‑3‑6 process as seamless as possible. Our hope is that this report, which like Eugenia said, it's in draft right now. But our hope is that we can ‑‑ our hope is that we can ‑‑ that Texas can use this as a tool to assess their own program, make changes, but also to help policymakers so that systemic changes can be put in place as well. And then just finally here's a list of everyone that was part of this project. It was a long project. Three weeks on the ground. Probably well over a year in planning, implementation, and now report writing. There was one question in the back before we go to lunch? 
   >> My question was, are you sharing what your questions included for the state of Texas that CDC worked with you? Are you sharing the questions that were included? 
   >> ERIC CAHILL: In the interview? Yeah. So, the interviews are attached in the appendix of the report. We had four different interviews with roughly the same questions but kind of geared to provider type. We worked together collaboratively on developing those interview questions. Any other questions? 
   >> EUGENIA DUNHAM: And I wanted to add that inviting them took a long time. It was not an easy process. 
   >> ERIC CAHILL: A lot longer than the three weeks we were on the ground. Question in the back? 
   >> [ Inaudible Question ]

   >> That was part of my question was this notion of so now if you get, like, 20 additional requests to come into other states... 
   [ Laughter ] 
    You know? Just in general, maybe if Texas could respond about from the TEHDI program, what it was that you did to work with your CDC partner at making that happen? 
   >> EUGENIA DUNHAM: It was a long process. Working with the CDC partner was easier than working with the leadership, you know? We all have trains of leadership that need to approve this process. So, you really need to be on top of it. You know? To go to the next person, to inform them how exciting this project is. And to even knock on doors. That helps. Yes. 
   >> So I know these numbers are from 2016, but as a Texan, I'm thinking of hurricane Harvey, and how that impacted. And any national disaster, really. I think my question is for you on does your department have an initiative to go out face‑to‑face to try to improve lost to follow‑up when there are natural disasters that happen? 
   >> EUGENIA DUNHAM: Well, again, we're such a small state. We do the best we can. I mean, large state. I'm sorry. Limited staff, because we have two staff members that are funded. We have two others that are funded by CDC and HRSA. And of course we have Christina in the back representing the RMIS system. So, we are limited, you know? We do the best we can. 
   >> ERIC CAHILL: I think that gets to the idea of force multipliers of having stakeholders, whether you're a small state and can have stakeholders in one area or regional stakeholders that are champions for your program that the extend the voice, and in Texas's case, can extend that Austin voice out to the other regions in Texas. A lot of states can do something like that. 
   >> EUGENIA DUNHAM: Yes. Yes. 
   >> ERIC CAHILL: I know we have gone beyond, and I hate to hold people. Thank you very much for your questions. They were good. 
    [ End of realtime captioning at 12:05 pm CST ]