ROUGH EDITED COPY

EHDI
Malpensa ‑ 11:00 am CST Breakout Session
March 5, 2019

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Illinois' Efforts in Reducing Lost to follow‑up in Chicago's Auburn Gresham Community Area through Community Partnerships and Quality Improvement Activities
with  Esha Phatak
11:00 AM CST. 
   >> ESHA PHATAK: Good morning, everybody. I'm with the University of Illinois at Chicago, division of specialized care for children. I am ‑‑ I'm going to advance this now before I forget. I help oversee the HRSA EHDI grant. I'm just going to give you a little bit of background on how the Illinois EHDI program is set up. I do have my counter part ‑‑ I don't see her in the audience. Here are the state partners, and three state agencies come together to fulfill the roles of the EHDI program. So, Illinois department of public health, they administer the CDC cooperative agreement. They are responsible for reporting, tracking, and follow‑up. And Illinois department of human services, early intervention. There are 25 child and family connections, the individual offices that are spread across the state. So, they are responsible for enrolling children into EI. And then the third agency being us, University of Illinois at Chicago, DSCC in short. We administer the HRSA grant. And we are responsible for systems development and quality improvement. 
    And we currently are in the middle of our three‑year grant. Year two is going to end at the end of this month, and year three will start April 1 and go until March 2020. So, I wanted to give you a little background so you understand. 
    So our HRSA EHDI grant, these are the goals we decided we wanted to work on during the three‑year period. I wanted to bring your attention to the one on learning community. And overall, we are supposed to be bringing positive change at the end of the three‑year period, meaning our program objectives are bringing a 30% increase in the kids diagnosed before three months of age, and a 25% increase in the number of children that are referred to EI before six months of age. And bringing a 20% increase in the number of children that are enrolled in EI before six months of age. 
    Okay.  So the purpose of the learning community is basically to bring some awareness and increase the knowledge of stakeholders and increase parent involvement and most importantly, improve outcomes of children who are deaf and hard of hearing. So, that's the whole goal of the learning community. So, these are the topics. I'm not going to go over these topics, but these are the topics we are required to address throughout the three‑year period. I'm just happy to report that we have pretty much hit most of these topics on this list. So, and let me just give you an idea. So, we did talk about 1‑3‑6, for those of you who don't know what 1‑3‑6, children screened by 1 month of age, diagnosed by 3 months of age, and enrolled in EI by 6 months of age. We make sure everybody knows those goals, talk about risk factors and medical home. So, topics like those. Actually, let me show you the next slide. So, this one talks about, what we did is we did some data analysis with Illinois department of public health. And they helped us determine which area in Chicago we needed to focus on. So, Chicago is so big. So, we couldn't work on the whole issue. So, we had to pick one community one small community that we could focus on. And how we decided on this community was I guess we came up with the loss to follow‑up rates in the whole of Chicagoland area and seen which ones are the worst. So, we picked three communities that we were going to focus on initially. So, the highlighted one, that's the one that's called Auburn Gresham. So, far we have been working in this one same community because it worked so well. For membership, we have all three state agencies. We have EHDI chapter champion. We have an audiologist and speech and language pathologist. We have a couple from St. Bernard hospital. And then Chicago department of public health, we have a couple of nurse consultants that are on our team. And then we have a local child and family connection EI office that is familiar or working with kiddos in that community. And then we have a federally qualified health center, Illinois Hands & Voices. We have our site coordinator that attends, and a parent guide that is from that community that we are focusing on. And Chicago hearing society, and CHOICES for parents. So, we have about 17 people that gather every month and get together and make a difference in the loss to follow‑up rates. 
    So this is the slide I just kind of put in there. This is what we had used to advertise ‑‑ why it's worth their time. What are they going to learn? So they are receiving technical assistance, training, resources and tools. One of them is sitting right here, Vicki Thompson. She's our QI advisor. So, thanks for all of your help along the way. And we have our learning community meeting tomorrow. I just wanted to show you that slide. So, just a brief overview of our our learning community is set up. 
    So the format is the first half of the meeting is basically presentations. So, we try and find topics that will be of interest, and they can learn something. So, we have obviously people from different areas of expertise, nurses. We have audiologists, speech and language pathologists. Everybody's background is different. So, we try and find a topic that will be of interest to them and they can actually learn something. So, first half of the meeting is set up that way. And second half after the break, we get together and talk about PDSAs. PDSA projects. Plan, Do, Study, Act. Anyone here who does not know what PDSA is? P is for Planning, so whatever you are trying to do or whatever you are going to do. So, that will be Plan. D is for Do. So, the activities that you're going to carry out. And then S is for Study. So, whatever activities that you are doing, how is that working out? Is that working out? Is it not? Basically doing a little bit of analysis. And then A is for Act or Abandon. If whatever you are doing is successful, then you can act on it and spread it on a larger scale. Or you can abandon it because it didn't work out. Do you have a question? 
   >> [ Off mic ]. 
   >> ESHA PHATAK: I wanted to make sure everybody knows what PDSA means. So, the frequency is we are meeting on a quarterly basis face‑to‑face. I have been very fortunate to have everybody show up. I haven't had many cancellations at all in the last year and a half. People have been very dedicated towards this learning community. And then we have teleconferences on a monthly basis in between. That helps us. If you don't talk to people like, you know, three months, for three months, people may forget and get busy in their lives. So, it was good to touch base on a monthly basis to see how is it going? How is the project coming along? Do we need to make changes? That sort of thing. So, it was very helpful. So, we have had, I think, six face‑to‑face meetings so far, and the seventh one is going to be tomorrow. Location has always been in Chicago, because the community is in Chicago. Most of our members live in Chicago, and we have some state agency representatives coming from Springfield. So, it works out nicely. 
    And just a comment about time commitment. We had initially asked folks to stay with us for one year, because we do work on detailed projects. So, we don't want a different audience each time or different members each time, I should say. But all of them have stayed with us, so we must have been doing something good that they thought it was worth their while to stay with us. So, we are very fortunate in that area. 
    Okay. So, I'm going to move on to giving you a quick update on where things are at with our individual PDSA projects. So, this one is focusing on ‑‑ let me just read the plan that way you know what we were trying to do. So, hospital will forward the newborn hearing referrals to the local health department. Staff will follow up with the family to remind them of the scheduled outpatient appointment. So, we picked St. Bernard hospital as the local hospital. They didn't have any staff, at one point, to work on sending or making a reminder phone call to the family, so they were losing a lot of kids, especially the ones that weren't passing their newborn hearing screening and needed to come back in for outpatient or move on to diagnostic. So, they had a very high refer rate and whatnot. So, they had a lot of issues with that. So, what happened is the local health department, being Chicago department of public health, one of the nurse consultants said why don't you send me those referrals and I'll make the phone calls for you and remind them of their scheduled appointment or whatever needs to be done? So they were like yes! Great. So, we'll just put together a list and send it to you. So, that's what they did. And the local health department staff picked up the phone and reminded the family that hey, you have an appointment coming up. They actually saw a difference that families were coming back in, because the mothers were overwhelmed and they were like I'm so glad you called me, because I totally forgot about the appointment. So, it ended up being a very good thing. So, the activities, I summarized for you what they did and what information they sent to local health department including demographics so they know who to contact and whatnot. This ended up being a good thing. They are adopting that as a standard practice right now until they have a staff member or local health department indicates that they can't do this any longer. So, we will continue that and see how that goes. If it's going to be long‑term or one of those things that until you have the dedicated person that's making the phone calls. So, we shall see. But for now we're going to continue with this PDSA as it is. 
    And to give you an idea, I guess, before I move on to the next project, there were 29 referrals in 2018 that they received from the hospital. And in 2019, so far, they have already received 20 referrals, so it's moving along really well. And I think they are able to bring over 50% of those families back in. So, that's a great success. 
    So this PDSA was, it focused on basically obtaining a second point of contact from the family. So, the St. Bernard hospital that I was talking about, they weren't doing that as standard practice. They would only ask the family for their primary contact. If their phone number is disconnected or the family moved, those families were just lost. We told them, can you guys just request maybe a second point of contact right before hospital discharge? Maybe we'll have better luck? They said well, we can try. So, a couple of the nurses actually started doing that, and they saw an improvement in that, that they were able to get ahold of some families, and it did actually help. So, this PDSA, basically we acted on it, and every nurse in the hospital is ready to adopt it, and they said yeah. It's not going to be too time consuming. This PDSA is now complete. We may work with other hospitals in year three, but we haven't decided which ones yet. But it seems like it's been proven time and again that it works. 
    All right. So, our next PDSA ‑‑ currently Illinois department of public health doesn't have access ‑‑ that they cannot see the status of a child's EI enrollment. They can't tell with a baby that's been diagnosed with hearing loss has been enrolled into EI. So, they looked into can we work with a local CFC and see if someone can look up the kids and tell us if they are enrolled or not? Our main goal is to improve the number or percentage of children enrolled into EI. They couldn't do that. So, one of the nurse consultants at the local CFC office said yeah, that's fine. You can fax me the list of kids and I can look them up and tell you. That was easy. If only everyone could do that. She was helpful and said yeah, I can set aside some time. So, we're like okay. Let's try for a few months. It worked very well. Here are the numbers. But 46 children were identified and two from the target area. And when we talk about target area, it's not strictly Auburn Gresham. If they are nearby, we took that into account as well. 23 had IFSPs in place. 10 were unable to contact, 9 moved out of the area, and two didn't find in the EI database, and there were spelling errors or name changes. And then there are two in progress. So, this seems to be going really well. There are specific challenges and barriers, and I'm talking specifically about this PDSA. They used to have a fax back form so if they didn't have a parent signature on it, they couldn't release the information to IDPH. I learned that that's now no longer an issue. So, I'm very excited about that. They are now able to share with or without parental signature, so that's really great. So, we can continue this PDSA now, and they can share information. So, hopefully now we can see ‑‑ I think it was ‑‑ I don't know what percentage, but part of it was that IDPH just didn't have access to the enrollment status. So, that opens up the door. So, our next steps would be contacting other CFCs in the area and see if, hey, can you do a similar thing? How much time does it take? Or Illinois department of public health will work with bureau of early intervention to see if they can get direct access to the database, but we all know that takes a long time. So, those are the two things. But this one is also seeming to be going pretty well. 
    So my last one, then, this one, let me read the plan real quick for the next few months, the local health department staff will contact loss to follow‑up families referred to them to assist them with scheduling an appointment. So, basically local health department received a list, and of those kiddos that they had no luck with. So, when public health sent a letter to the parent, then sent a letter to the physician and asked them to give it a try. The local health department picked up the case, and the nurse made a phone call, sent a letter, made a home visit. She tried everything to bring them, to get them to come back in for an outpatient. These were all the kiddos that were lost to follow‑up in the system. So, what that nurse did, then, is did all of these home visits, letters, telephone calls, visits to the health care providers. Sometimes she didn't have the copy of the results or whatnot, so there was a little bit of follow‑up with that, too, before she could initiate the contact with the family. And then she made visits to the hospitals. What I want to tell you here, though, is that I have, I think, data broken down into years. Sorry, I'm going to fast forward here. I'm not going to go through each year, but I do want to tell you what actually ended up happening. So, from September 2017 when we first started to February 2019, there were a total of 98 referrals, so almost 100 referrals that the nurse received from public health stating all these kiddos are lost to follow‑up. Of those 98, 20 passed their hearing screen. They came back in. The nurse was successful in bringing them back in. They passed their testing. Nine of them failed their testing. And then my memory is not working. So, one of them hospital sent results directly to IDPH. 32 were unable to contact, be it wrong address or disconnected phone numbers. 22 of them refused testing or moved to another area or another state or were just non‑compliant. And 12 they're working on. So, what these numbers basically mean is that we were able to bring back almost 31% of those families that were initially lost to follow‑up. So, that's pretty much what I want you to get out of those numbers. That's what it means. If it wasn't for that nurse, we would have lost that 31% of families. That's a great thing. We can't see a reason why we would want to discontinue doing something like this. 
    So to make that happen, we know that it requires time and whatnot, and we have this one dedicated nurse. I wish she was here so I could acknowledge her efforts and thank her. But she is doing great work, and a lot of hard work to make the families come back in. We're very fortunate to have her on our team. If we have a staff turnover or something like that, then these efforts can't continue no matter how much you want to. That's always a challenge with everything here. 
    I'm going to go back and tell you some of the challenges that she told me she had were delayed processing of the family's medicated application. So, they couldn't get into their scheduled ‑‑ they couldn't schedule the appointment, rather. And then non‑compliant families that just no matter what you did, made a phone call, made a home visit, you could hold their hand and take them to the audiology clinic and they wouldn't go. So, unable to schedule audiology appointments, health insurance pending, and families without a primary care provider. She came across a lot of low‑income families that didn't have a provider, and they just didn't see the importance of follow‑up testing. And they said there's nothing wrong with my child. 
    Some doctors offices refused to fax referral. So, there was a delay with documentation there. And then disconnected phones and that sort of thing. She gave me this list, and I wanted to just point that out that it's not easy. I don't know how she did it. But 31% of those families, bringing them back in, she has to go through a lot of hard work to make that happen. 
    Okay. So, I think that pretty much covers the highlights of my presentation. I did want to tell you that to bring even more change in our lost to follow‑up numbers, we distributed OAE devices, hearing screening devices to this local health department nurses and trained them on it. So, when they do make the home visits, they can take the devices with them and screen the child right there. So, it just cuts down on all of that follow‑up. Hey, we don't have the results. Hey, the audiology clinic doesn't have open slots. They haven't done that yet, but they have all been trained, so hopefully in the next couple months they will be taking the individual portable devices with them and just do the screening right there. Of course, the kids that are in need of diagnostic, it's not going to help solve their problem, but at least it's better than nothing. So, they could still do the testing in the home and see if the child passes or whatnot. Maybe it will emphasize the important of getting diagnostic testing done, you know, when the family just sees it right there that the child didn't pass or whatnot. So, we could see many benefits to that. But that was our other strategy. So, yeah. 
    I guess those projects have been very successful. We haven't abandoned any of them because they have worked well for us. We're going to continue in year three with the same community and hope that that goes well as well. What questions can I answer? Yes? 
   >> [ Inaudible Question ]

   >> ESHA PHATAK: Hopefully I will remember both of those. Let me just have you... 
   >> Was HRSA funding utilized to pay the nursing staff for their time to do the visits, participate in the collaborative? And did you also use HRSA funding to purchase the OAE equipment? 
   >> ESHA PHATAK: No. We did not pay the nurses. They were making the home visits to the families for other reasons anyway. So, they just agreed that while we are there making the home visit, we'll just address the newborn hearing screening as well. 
    The second question, we did not pay for those out of the HRSA funding. It came out of other funds. We cannot afford that. Any other questions? 
   >> I just want to say what a great job you guys are doing. Working with you for the last three years has been so inspirational. We can't get anything done like this in Colorado, and you guys have done such a great job. I'm just really proud of you and your staff. 
   >> ESHA PHATAK: Thank you so much. Anything else? Any other questions? Wow. We're on time. We're going to continue with our Auburn Gresham community and see. A couple other strategies that we did do is we actually had our guide by sight program do a presentation for our agency. So, our care coordinators could actually refer families to that program. Every now and then they could use a reminder as to what resources are available to families. That was another strategy that our learning community members thought that let's help increase referrals. So, that wasn't a PDSA, but one of the other strategies we utilized. I can't say that referrals have been increased, but it was just done a couple months ago. Crossing fingers and trying to do what we can to make people aware of the resources that are available to them. Yes, go ahead. 
   >> Yeah, hi. I was just curious how long your meetings were with your learning community and what time of day or evening they were? 
   >> ESHA PHATAK: That's a good question. So, they are two and a half hour meetings. So, we did, like, 12:30 to 3:00, just so we could give people enough time to grab lunch. And then we did an hour of presentation, a little bit of break, and then we did our breakout sessions to discussion PDSAs. And let's see, what else? Did I answer your questions? Sorry. Yep? Okay. And they were all in Chicago, and we met on a quarterly basis. It worked out. Yes? 
   >> Thanks. So, this is a process question. So, if you get the list, the local health department gets the list of infants that they need to follow‑up on. What if one of those kids are not being seen by the public health nurse for other reasons? Do they still do follow‑up? 
   >> ESHA PHATAK: Yeah, um, I mean, they were also ‑‑ the referrals get distributed once they are received by the CFC ‑‑ not the CFC, but the Chicago department of public health. They will distribute them based on their area. So, it wasn't just by that one nurse. She did help out when she could, but they would be distributed to the appropriate area where you knew the nurse was going. I'm sure there are other nurses that stepped in to take care of that. Yeah. Good question. 
    Anybody else? Sorry. I can't see. In the back? Okay. Thank you so much. Thank you all for coming. 
   [ Applause ]    
    [ End of realtime stenographic captions... ]