ROUGH EDITED COPY

EHDI

BECKHAM

USING THE 2012 PHYSICIAN SURVEY TO IMPROVE THE MEDICAL HOMES’ CONTRIBUTION TO HEARING SERVICES

PRESENTERS: LISA HONIGFELD AND BRENDA BACH

3/9/15

11:05-11:35 A.M. ET

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(This text 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.)

> It's about time to get started. I've put everyone -- if everyone has the orange-ish pink-ish sheet on your chairs, we're trying to collect them back, a survey about the presentation. You can leave them on your chair or hand them to me afterwards.

Our first presenter will be talking -- I am the moderator for the session. We'll have two 30-minute sessions, and the first one is entitled Using The 2012 EHDI Physician Survey To Improve The Medical Homes Contribution to Hearing Services.

> LISA HONIGFELD: Thank you. My name is Lisa Honigfeld, I'm the vice president for Health Initiatives at the Child Health and Development Institute of Connecticut. My organization is dedicated to improving health and mental health systems for children in Connecticut and one of the primary pieces of work is promoting medical home and allow moving pediatric practices, so that they make their maximum contribution to children's healthy development, and for years now we have been working in this field of early hearing detection and connecting children to intervention services. I have to -- I usually say this when I go to my conflict of interest slide, that while I do not and my co-presenter, Dr. Brenda Balch, our AAP Chapter Champion for EHDI, as well as a practicing private practice pediatrician in Connecticut, that we have no commercial conflicts of interests. I do have a 24--year-old daughter, and she should be here. I'm going to dock her allowance. Who was probably -- there was no newborn hearing screening then, so maybe born with, maybe had late-onset or progressive hearing loss, but she is severely to profoundly deaf. She wears two hearing aids. She is a college graduate. She's a certified developmental specialist in the Early Intervention Program in a different state, not in our state, and is currently pursuing a master's degree at Gallaudet in school counseling, so I have a little bit of a conflict of interest, but don't hold that against me. Before I actually begin my content I want to thank Anjonette, who is sitting in front, and the Department of Public Health, our state EHDI program for supporting the work that we do, the work that we do to -- and recognizing the role that medical homes do play in early detection and connecting children to other services. Without the support from our Department of Public Health, all the things that we're going to talk about, that Brenda and I are going to talk about today we would not have been able to do in Connecticut. So thank you. I appreciate that.

So what we're going to do today is I'm going to talk very briefly about the results from the 2012 early hearing detection -- what is the actual name of the survey? The EHDI Physician Survey, I'll call it that, the 2012 EHDI Physician Survey, I'm going to talk about the Connecticut results and how we have used those results to change our programming for child health providers in Connecticut so that they make a larger contribution to the care of children with hearing loss. I'm going to talk about the piece that we have been doing for several years and we're still doing and I'm going to talk a little bit about why that is not good enough and then Brenda is going to come up and she's going to talk about some new work that we're doing and how we have high hopes of making a larger contribution because of that. And we're going to talk about the results of our work, but hopefully we'll have five minutes for questions and we can hear from anything that you're doing with those survey results or any outreach programs that you have for pediatric providers that might be helpful for the rest of us to hear.

So the Connecticut -- the EHDI physician survey was done in 2012. It included data from 26 states participating. How many of you here know if your state participated? Excellent, very good.

And some states also participated in a 2005 survey. How many of your states did both? I actually -- Ann, do you know if our state did both?

We can't -- you know --

[ off microphone ]

> LISA HONIGFELD: We have not looked over time at the two years. So it was 26 states over 2,000 responses. In Connecticut alone we had 72 responses and 94% of those responding were in pediatric primary care, private practice pediatric care. I think those are important because that's the onesies and twosies. We do not have a lot of hospital practices in Connecticut, so the onesies and twosies practices all over the states are the hard ones to reach and hard practices to change in terms of what they do. So it was encouraging that we got good representation from that group. So we had some good news. Good news that seems like we have it down in terms of referring to an audiologist or making sure that a kid, a baby, who is referred from newborn hearing screening sees an audiologist. I think we've done a tremendous amount of work to make that happen, but that seems to be the good news, a lot of that happens straight from the hospital, but I think our pediatricians are good follow-up people and are doing their job there, so that's great.

Some of the bad news. Regarding the other kinds of connections that we expect from the pediatric medical home is not always happening in Connecticut. It seems the ENT referral, the ENT connection goes very, very well and we can count on that, 95% of our pediatricians are doing that. I think that's probably the easiest one. The child health providers are used to referring to other medical specialists and they've been -- they've worked with ENT specialists otitis media for years and years and that's an easy one for them to absorb. Some of the others, genetics, very low, only 14% of pediatricians are referring children diagnosed with hearing loss to geneticists. Ophthalmology, similar, only 5%. And then this early intervention one says 24%. That looks unbelievably low. But I want to -- we believe that what often is happening in Connecticut is that the connection to early intervention services happens from the diagnostic center. So by the time the baby goes back to the pediatrician, they've already had that connection. The only thing that really worries me about that is that I would hate to think that means that there's very little connection between primary care pediatricians and early intervention. In Connecticut, our law requires that the primary care pediatrician or child health providers signs the Individualized Family Service Plan, the IFSP. So we know that when kids are enrolled in early intervention that the child health provider is signing that IFSP. We don't really know the mechanism behind that, if they understand it, if they read it, if they put it in their record and then could answer the question. This kid is getting early intervention services from this place. Some work for us to do to figure that out.

So we started this work. What we did was said, all right, this is before the survey. We're going to do this academic detailing model. We have this educating physicians in practice, Educating Practices in the Community program where we do lunchtime visits to practice. Brenda does a lot of these. We do a whole presentation on why -- a whole presentation that includes the whole practice, building staff, the front office staff, and it really focuses on the resources and opportunities that are available in our state to help them, one, for children who are diagnosed with hearing loss or don't pass newborn hearing screening. And, two, we really made a big emphasis on children and risk factors, identifying children who are at risk for progressive or late onset hearing loss, and Brenda is going to talk a little about that work. And the third thing that we focus on is that four-year-old hearing screening, because we know that it's late, but it's an important step in that whole hearing monitoring. Unfortunately, our pediatricians, some of them have this idea, well, I'll just wait until they go to kindergarten and they'll screen their hearing there, I can't worry about it, I can't do it in the office. We, in our state meeting, actually talked about what we might do, and I saw several sessions here, what we might do to encourage better screening in the offices, whether it's OAE screening -- on the survey we found out that probably only about a quarter of our pediatricians are using OAE, but things that we might do to encourage better screening in pediatric primary care.

We have -- here are the things that we talk about or Brenda will talk about, rather, when she goes to practices. What we have done is, since we have the results of this study, that there are some areas, some lapses in referral of genetics, ophthalmology. We've added those emphasis for those things into that presentation. Basically it's results over visiting 30 practices, 174 pediatric providers in those 30 practices, that includes nurse practitioners, physician assistant. That really 93% of them say that they will use the information provided and that the training was useful. So that sounds great, and we think we should be celebrating, but one of the things we quickly realized is if you go to a practice today and you -- and Brenda does this presentation, they may not see a baby referred from newborn hearing screening for five years, for seven years. This is a hard message to implement immediately, and when they don't do that, they kind of lose the information, and when that baby who refers from newborn hearing screening or diagnosed with hearing loss does come in, what did that nice lady tell me when she was here I should do next? So we recognize that. We also found that it's pretty slow-going, one practice at a time, when we have so many small practices in Connecticut. We have 300, actually, pediatric -- that includes family medicine practices that see children. We have so many, and it would take us forever. We've done a tenth of them. And then as I said, this issue of not being able to use the information regularly and immediately is a huge problem for us. So with that thinking, one of the things that we quickly realized is best to teach this information to pediatricians, to child health providers, exactly when they need it. I think they call this the just in time learning, exactly when they need it. So now I'm going to ask Brenda to come up and tell you a little bit about some of the work we've been doing since we realized this.

> BRENDA BALCH: Good morning. Thank you for coming. I know a lot of people in the audience from -- I've been with EHDI for ten years as a Chapter Champion and recognize a lot of faces, and hopefully some of this information will be helpful in physician education projects for your states and I'll be happy to work with anybody on any of these programs that we do.

So the EPIC model is great. I go to the practices and talk to everybody in the practice. Sometimes you'll see a staff member who is going to share with the doc, hey, I heard them talking about somebody not being able to hear or whatever. Everybody in the practice is relevant for them to all know about hearing loss and how to make the intervention and what is important.

But as Lisa was saying, if they don't have a patient for seven years, you know, they may have that in the back of their mind, but they're really not going to have that in the forefront of their mind and know how to use it. So in 2011 I did a pilot program, and then went on to do a program with the Department of Public Health and Child Health and Development Institute on physician coaching, physician education. And so what I do is, in our state, somewhere between 50 and 70 plus patients are identified with hearing loss at birth, and then I contact the primary care provider by phone and ideally try to contact them between two months and four months of age when the child is two months or four months of age and just help to be a liaison with regards to interventions. So I have a conversation on the phone and I talk about, you know, what the last audiology evaluation is, what the child is getting early intervention and how old they were when they started early intervention. What specialists have they seen, genetics, ophthalmology or other sub-specialists because they have other disabilities associated or non-associated with their hearing loss, and have they shared with the families about family support services? And then so after the conversation where I hopefully will provide some education, I'll consult and give them information, I summarize in a letter my conversation with a primary care provider. And in addition I send them resources. And the resources evolve based on what has come out. They evolve based on that individual doc, whether they have some issue about the child has auditory neuropathy, for example, so I might include information on auditory neuropathy or they have questions about what genetic testings are done in children who have hearing loss, so I'll send them information on that. I try to really individualize resources. In addition I send -- and I have a number of the resources here. In addition I send a number of other general resources. I send something on CMV and something on the medical home checklist for kids with hearing loss, something on the family checklist for kids with hearing loss, Hands and Voices brochure, et cetera. So there's several pieces of information or resources that I send to the office in addition to the letter. And then the last thing I do is I send a fax form and I have a copy. I should have uploaded it, but I have a copy of the fax form. Actually, Lisa, can you hand me that?

And this has evolved and it will continue to evolve, but basically it just says who I am, it has a space. I'll fill in the name of the child and date of birth of the child and ask if they're involved birth to three, which birth to three program, which subspecialists and when and when their last audiology appointment was. The reason I do that is, one, maintain communication with the primary care providers, and it's good that --

Sure. You know, one of the issues that we found in physician survey was when you look at how many have been in touch with their DPH EHDI program, the percentage was very low. Well, in doing this I was hoping that maybe we could improve the response by physicians that they had been in touch with their DPH department in order to get learn about hearing loss.

And so the other thing is, when I have conversations with primary care providers, I was in private practice for 18 years, I do a bunch of other things now, and you don't have a lot of time to talk on the phone. In order to get people engaged, the docs engaged in talking to me, I try not to spend too much time on the phone. I really try to minimize it to five minutes, and so I -- depending on the patient and the doc, I try to figure out what is the best things to attack in this phone call, and then if I don't get the information on how old they were when they saw birth to three or when they were referred to genetics or ophthalmology, hopefully on the fax form that they send back I'll get the details of that information.

And since 2011 I have contacted 185 primary care providers in our state, and the next two slides will show you the data. It is a time intensive, labor intensive job and I'm fortunate enough to have financial support from the Department of Public Health in order to do this. 2013 I contacted 74 primary care providers of children who were born with hearing loss, who had a diagnostic audiology evaluation that said they had a hearing loss. Fortunately 92% returned the fax form with more detailed information on the sub specialty referrals, et cetera, and 73% had received diagnostic audiology evaluation by three months of age. So I think these stats are pretty good. In 2014 I contacted a few less, 59 primary care providers, 92%, again, returned the fax form. That wasn't without a little prodding. I had a couple -- I sent letters to everybody, the fax form, I put a little personal note on it saying please fill out as soon as possible, thank you, thank you, thank you, and then basically three tries and you're out. I send the letter and if I don't get it back in several weeks I send a fax to them with the fax form, a copy of the letter saying please do it. And then I'll do that fax one more time, three strikes and they're out. But I have to say, it's probably maybe 10 total out of 180 something that I've contacted that haven't ultimately, you know, with a third threatening fax sent something back. So in 2014, 59 primary care providers contacted, 92% sent the fax forms back and 66% had received diagnostic audiology evaluations by three months of age. I did exclude in the data with the Department of Public Health, you know, worked very closely and I get the information on when they have not -- when they've been referred for diagnostic audiology and they haven't passed. Some kids passed a newborn screen so they weren't referred to diagnostic audiology after three months of age, so I did exclude those from here. I sometimes do communicate with primary care providers of children diagnosed later on.