ROUGH EDITED COPY

EHDI 2019
TOPICAL SESSION 6 - INTERNATIONAL A
MOVING THE NEEDLE THROUGH REGIONAL LEARNING COMMUNITIES
MARCH 5, 2019
1:45 P.M. CST

CART PROVIDED BY:
ALTERNATIVE COMMUNICATION SERVICES, LLC
www.CaptionFamily.com

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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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	>> All right.  So good afternoon.  Good afternoon, everyone and thank you for coming to our presentation my name is Michaelah Townley I'm the follow-up coordinator for the New York EHDI Program.  Today I have with me Sharon who is our data coordinator she is out in the audience.  Do you want to wave, wave to everyone.  She is our data coordinator for the EHDI Program.  We call her our data guru and presenting with me today I have Jessica Holst, who is our education and training contractor for the NYEHDI program.  So to begin, we're going to talk about moving the needle through the Learning Community.  And some key takeaways for this presentation are you'll learn how to implement quality improvement methodology using Plan-Do-Study-Act cycles to implementation Joint Commission on Infant Hearing or JCIH and NCHAM the National Center for Hearing Assessment and Management.  I did look it up before but there's a lot of acronyms.  So best practice recommendations in regional learning communities.  
	You'll also be able to identify Learning Community solutions for outline barriers and decreasing Loss to Follow-up for infants who did not pass their initial hearing screening.  And lastly, you'll be able to identify three techniques to promote engagement of regional family leaders and EHDI providers for measurable improvement in your regional learning communities.  
	So I'm going to pass it over to Jessie.  
	>> JESSICA HOLST:  Okay.  So the first thing we wanted to talk about today is purposeful planning.  And if anyone came to my previous presentation this morning, that really started there, as well.  
	Your work is going to be as strong as the planning that you put into it prior.  And we certainly did spend a decent amount of time planning for this Learning community and also debriefing when it was finished so if you're interested in doing a programming like this in your state we have provided an overview of the timeline for you.  
	In the summer of 2017 we had our planning team monthly meetings.  Our planning team consisted of our Medical Director for our Department of Health, our NYEHDI coordinators and NYEHDI team at the Department of Health.  We also have quality improvement support from NICHQ so we have members of that team on our Learning Community planning team.  And at this time I was recruited from the Buffalo region as, yes, the education and training contractor.  But I also was participating in the Hearing Loss Task Force on our local Early Intervention Coordinating Council at that time.  So it was deemed important that they have a support network in the Buffalo region to help foster involvement through personal relationships.  And then also talk about the feasibility looking forward of what could get accomplished and what we could work on and what timeframe.  
	We recruited our local leaders and in the Fall of 2017 did an in-person kickoff meeting.  I can't say enough about the importance of your starting a project like this of starting it with an in-person meeting.  There's nothing like getting everybody in the room and providing an opportunity for them to talk.  
	When we look at responsibilities and roles related to public health requirements we identified there were a lot of misconceptions and in addition to that, there really was no collaboration occurring from the birthing facility to the pediatric audiologists to the early intervention providers as well as then overseeing early intervention officials.  
	So at this meeting we accomplished a lot of shared education and learning.  We had our parent leaders in the room, as well, and tried to also introduce some early quality improvement initiative discussion through that PDSA cycle.  As we went on a requirement of the participant of the Learning Community was to be on a monthly phone call and everyone in the Learning Community also got copies of their measure performance for initial hearing screening, their follow-up rates.  Their referrals to EI.  And then an audiology piece, the referrals to EI in their follow-ups specifically.  
	We initiated those monthly calls in the winter and started providing data measures, started providing some individual targeted assistance.  As we moved into spring we had another in-person meeting at one of our largest birthing facilities in the region that had been identified as an underperformer.  And had a negative perception in the community from our pediatric audiologists of not only their follow-through but the perception of the importance of follow-through.  
	So at that meeting that facility was really able to get a lot more buy-in as well as establish an avenue for continued conversation.  And growth moving forward.  The amount of improvement from that facility alone, simply because they were able to have peer-to-peer conversation was astounding.  We then continued into the fall of 2018.  Continued our monthly meetings.  Did some wrapup and at this point identified a need to engage our physicians which had been a group we tried to recruit in the beginning but didn't have a lot of success.  Then in the winter of 2018, as you can see, our planning team debriefed and did some post evaluations and we're continuing our work with our primary care engagement.  
	So that's just a bit of an overview.  We're going to delve into it a little bit more deeply now as we get going.  
	Defining participation.  As a local provider at the time that this was being identified, we were looking through who is important to have at the table.  So clearly all of the birthing facilities were invited.  And all of them came to the initial meeting.  We did get a few dropouts from our smaller birthing facilities on our outskirts as we continued through but they were all at the table for that initial meeting.  
	We also had all of our pediatric audiologists.  Previous to this project our Learning Community in the area -- I'm sorry our LEICC our local Early Intervention Coordinating Council, had developed a sheet of qualified pediatric audiologists that was being used by pediatricians.  
	So we knew who to invite.  And we had already made those phone calls and conversations for -- for example some practices said, no, we don't feel comfortable.  But they had been on a list for the hospital for example.  
	Our qualified early intervention providers were at the table.  Our family support agencies, which in New York State is Parent to Parent of New York State.  Hands & Voices.  We had a parent that was involved with that.  And then in the Buffalo region we also have the Buffalo implant group which is our cochlear implant support group.  
	We had five family leaders who currently or very recently had their children in the early intervention community and experienced that firsthand.  
	We had our county officials for each county that was involved in this process because we couldn't make any change unless we were aware of whether that was able and then would be followed through.  
	And then we had some support of external partners at the state level, as well.  
	So if we look at our baseline data performance, this is really what fueled the Buffalo region being chosen.  
	As you can see for our measure 1, which is our initial Newborn Hearing Screening rate we did decrease the percentage on the left side between 80 and 100 so you could see a little bit of the movement.  We're talking about a lot of babies here.  New York State has the third largest birth cohort.  And Buffalo, which is in the blue, is named by our RPC area our regional perinatal center area and as you can see they are hovering at a little below.  And the region over to the right that just means we're still collecting data most likely for some of those kids at that time.  But some improvement to be made.  Particularly with one facility.  
	This was their follow-up rate, which as a state, we are significantly lower in comparison to other states across the country.  
	We were looking to get closer to a 30 to 40% at a state level.  But as you can see, the Buffalo region was significantly below that.  
	And then for referral to EI, this is a documentation issue.  We discovered.  But in our EHDI system there was a check box the child was referred to early intervention it doesn't make the referral but that documentation has to occur in order for us to be able to report on this measure.  As you can see, very little documentation was occurring in the area of referral to early intervention.  
	We identified in the work of the Learning Community there was also confusion around the perception of who should be referring to early intervention.  The pediatric audiologists did not realize that it was their direct responsibility and requirement to make that call.  
	So through the support of NICHQ we implemented Plan-Do-Study-Acts.  At the initial kickoff meeting in the fall the whole team was educated on what is a PDSA.  They were provided examples related to hearing loss.  Related to what could be improved upon in a birthing facility.  What a pediatric audiologist could work on.  What an early intervention group could work on.  
	How many of you are familiar with PDSAs?  Okay good then I'm not going to spend a lot of time on that.  But this was the measure that we utilized to fuel that change.  And then related to that once you have identified something that works, you can pick something else and this is -- quality improvement is something we're going to commit to not just for the timeline of this process, but as a provider we should always be trying to improve our process and look at how we do that.  
	In New York State we utilized this document here as our promising practices to reduce Loss to Follow-up, which was built off the JCIH recommendations.  This is what the birthing facilities and the pediatric audiology groups were given to start with.  So many of them just chose one of these bullets and that's what they initiated their work on.  
	We used this document here as a method of documenting what they were working on.  
	The hope was that each team would turn this in every month and then report on the follow-through every month and have a new one every month.  That didn't occur.  Some programs certainly did much better than others.  
	We realized there needed to be a -- a lot more support in actually filling out this form.  
	That fall kickoff meeting there was so much time spent on trying to understand our public health law responsibilities that we probably could have devoted an entire day to filling out this formulation self.  But those programs that did utilize it said that they found a lot of support in the ability to document change and then also used that with their leadership to show the need to continue to work on some of these areas of improvement.  
	We did bring some examples for you today that we can go through.  I'm just going to pass these around.  
	So when you left here today we wanted everybody to have a very viable understanding of what they could use the form for, what some of our facilities used it for and takeaways that you could go do right away.  Our first example was one of our birthing facilities, and they worked on after referral, the RN will contact our coordinator from our close the gaps program to find out the best contact information, fax referral sheet follow-up after fax confirmation was received and that the appointment was received and they will provide the family with information packet and appointment information.  
	This piece for them, they stated that there was not great communication with their families of when their follow-up appointment was occurring.  It is our recommendation that all families leave the hospital with their appointment for follow-up.  
	So that's what they were trying to hit at.  
	In addition, this particular facility was not utilizing the state brochure we have a state brochure, can your baby hear you.  There's three different forms one is your baby passed one is your baby needs another test and they weren't utilizing that already existing brochure so they included that in their PDSA as well and you can see they documented how they were going to utilize that and what they were going to measure.  
	Another piece for this particular you'll see providing the families with a location that's convenient.  In our region most of our follow-up appointments were being sent to our downtown area.  Which Buffalo is not huge.  But it's a trip, particularly if you're coming from Niagara Falls.  And there was an agency that offered Newborn Hearing Screening follow-up that within a five mile radius of the hospital so they started developing a referral relationship with that agency if preference first if their parents didn't have their own preference and they saw an increase in follow-up right away it was much easier for them to get to that appointment.  They had a population that didn't -- many were limited in their socioeconomic status.  So to not have to drive so far, they saw an increase right away.  
	So the next example that we wanted to give for you guys is also from a birthing facility and later on in our Learning Community we had parents start participating in the professional teams.  So this PDSA came from that.  There was a parent that participated at one of the birthing facilities.  This particular birthing facility utilized an outside -- a third party screener.  So they created a resource for parents with step-by-step instructions on what was needed to prepare for follow-up audiology appointments.  They worked with that family member to identify that that would be parent friendly, it would be usable, it would be accessible.  And also that it would stand out in the paperwork pile that as a new -- as a new parent, you come home with a huge packet of paper.  They wanted to make sure that that stood out, as well.  Because that needed to have some attention to it when they did go home.  
	Are there any questions on either of those two?  I see some nods like, yes, we do that.  Or no, that's a good idea.  
	The next one is by one of our audiology practices.  This has to do with results that couldn't be entered into our information system for some reason either at the time it was a requirement in our information system that you have complete results so if the baby couldn't have both ears tested, that one ear information wasn't able to be inputted.  
	I will say since then we have been able to update our system and we have changed that but they were utilizing a faxback form so any time they tested a baby if they can't right away put it in the EHDI-IS information system they would fax both the pediatrician as well as the NYEHDI office and then we would have that information if we went to look for entity later and that certainly increased their follow-up, as well.  
	>> MICHAELAH TOWNLEY:  All right so at the midpoint of the Learning Community which was around April we checked in with the data to see where the Learning Community was and where we were making progress with the Learning Community.  In this sense we kind of used our own PDSA methodology to see where we needed to change or if we needed to adopt -- adapt or change completely what we were doing with the Learning Community.  
	So we found that our initial screening rate had raised to the statewide average which was a significant improvement from the baseline.  So that was a group -- there was a lot of effort from the NYEHDI office as well as the birthing facilities for working with the birth Registrar or the screening technicians, making sure that the correct information was getting entered into the information system as well as making sure that those kids that didn't receive the initial screening if they were in the NICU, that data was getting entered into our information system.  
	And one of our biggest offenders, this was the case, there wasn't a point person that was entering in that initial hearing screen from the NICU.  
	So unfortunately at midpoint, our follow-up rate wasn't -- we didn't see significant improvement.  
	It was still below the statewide average.  It hadn't -- it was still sitting around probably 19%.  It didn't raise inches we thought it was because we were putting a lot of effort with these audiologists and hospitals to try and improve this rate.  
	But where we saw our most success was our referral to EI.  
	So at baseline, as Jessie mentioned, we didn't really have that many kids that were documented or the check marks -- the check mark -- or check box sorry was marked in the NYEHDI system.  So we were kind of missing that information on our end and it was the documentation that was missing.  It wasn't that kids weren't being referred.  It was just who was documenting this into the NYEHDI information system.  So we raised this around -- at the midpoint the referral to EI rate was now 75% from 25% at the baseline.  So it was a significant improvement.  And that involved a lot of education of who was entering in the information.  
	>> JESSICA HOLST:  So at this point when we looked at our midpoint information we were really excited about that initial hearing screening.  The hospitals were really excited about that.  They could not move on until they fixed that piece.  Almost to a detriment.  But that was wonderful.  There was a lot of concern around why were we not moving that follow-up piece.  Our programs were documenting.  What was the issue here, how could we improve this?  
	So our largest drivers of change were our research of infants missing initial hearing screening results and establishing that internal hearing screening log, specifically for the NICU but also for a lot of those smaller hospitals, they maintained that individually, they didn't have a large cohort, so that helped.  Working with the birth registrars to ensure that the final hearing screening result before discharge was captured in vital records.  This is outside of the Buffalo area, as well.  But I would say at least 75% of our technical assistance calls, it has to do with the fact that the final information is not the last screening result.  
	And once there's a conversation with the birth Registrar, we see dramatic improvement in their initial hearing screening rates for that particular facility.  
	Also, once we identify that, we have to make sure that there's a system for future cross check because once there's turnover in staff, that may go back.  
	And then researching infants missing referrals to EI determine the system for future cross check, as well, the pediatric audiologists are who took responsibility for that within this group.  
	So as I said, we really were looking at how can we make some dramatic change here because we're not seeing an improvement in our follow-up rate.  And we started looking at how many babies are requiring follow-up within this region.  
	It was really high.  So in our heads, we said, why?  Why would there be so many babies when we're looking at a specific geographical amount of infants this is much higher than we would expect.  So we looked at the birthing facility fail rates.  How many babies were leaving the birthing facilities with a final refer.  We started coining this as a fail rate because when we talked about it with the birthing facility we said fail rate is something you take seriously.  It fails.  It sounds bad.  
	When we were separating documentation of parent -- sorry; I'm going to go back here.  
	When we were looking at fail rates, you can see on the -- that's your left -- at the left side we have the birthing facilities that participated.  Then we have the percent of babies that were failing either the automated AABR and the percent that were failing their OAEs those in red for the AABR, that should be around 4%.  That's what we would expect based on the instrumentation recommendations for AABR and as you can see we have three birthing facilities that the amount of babies that are failing that initial screening is significantly higher than that and subsequently they are flooding the amount of babies that need follow-up testing that are likely to go on and have normal hearing but it requires that birthing facility and the state to do a lot more tracking and a lot more legwork.  In addition for those facilities that were using the OAE that should be closer to 3, 3.5% of the babies that are screened with this are going to have a final refer or a fail and you can see that there were three facilities that had a much larger percentage than that.  
	The birthing facilities weren't paying much attention to that and honestly as a state program we weren't looking much at this either but after we had the discussion we started saying are you using a two-stage screening method?  What's the training level of your screeners?  How many times are you screening?  When was your instrumentation recalibrated?  The birthing facilities were able to bring this down.  For one birthing facility, they changed the instrumentation they were using.  They found an OAE that was much simpler and this documentation of the high fail rate is what allowed their leadership to approve the financial cost of purchasing that new instrumentation for some facilities is that they weren't doing a two-stage screening.  The baby referred on their first screening and they didn't do another one before discharge.  
	When we started talking to the birth facilities in the manner of well if we can bring this percentage down you're following a lot less babies once they leave they were very motivated to continue to look to this so at the midpoint moving forward and now statewide, we developed a measure that comes right out of our information system for what we're calling fail rate or refer rate.  
	
	The next piece has to do with our Child Find system.  How many of you are familiar with the Child Find system?  Okay.  So in New York State the way our public health laws were written, I don't know if it's the same states but a public health law is written a child is referred to Child Find if the family has not come back for follow-up and there's been two documented attempts to contact by no later than 75 days.  
	Well, what happened when we came into the Buffalo area and we were doing all of this research of missing follow-up is a gigantic pot of families got referred to EI Child Find because the birthing facility had either lost touch, they had moved out of the country, there were several different reasons but the birthing facility had made the action that they needed to, they referred the children to EI Child Find.  However those children remained on their missing child lists.  There is a delineation when they open it.  It says refer to EI Child Find but it doesn't change their percentage so this was significantly impacting the follow-up rate.  And honestly the birthing facilities were getting -- they were getting frustrated about that because it wasn't improving so we developed a separate measure that teased out the babies that had not yet had a referral to EI Child Find.  So for example, on your child list, you've done your action that's required here.  And these babies need the additional attention or documentation for action.  And once we teased that out, the birthing facilities had a feel of success.  
	Okay.  It's documented somewhere.  And my chart looks better, which certainly made people feel more comfortable.  
	Something that's continuing in the Buffalo area is our EI county officials revised the Child Find letter that's sent to all of these families so when the family goes to EI Child Find the letter is sent to whatever the most recent address is to include two different facilities that those families could call to do the follow-up testing.  Previously it didn't include that it just said your baby failed their screening, they need more action.  
	Please connect with your pediatrician about this essentially.  
	We certainly have a lot of area improvement in our Child Find system.  I don't think a letter is enough.  But at least the letter that's going out has a specific phone number and Point of Contact for those family members that are going to be motivated to make an action on it.  Does anyone have any questions on those two?  
	>> I was just wondering if you offer or your hospitals offer an outpatient rescreen prior to being sent to audiology.  
	>> JESSICA HOLST:  No, no, they don't.  
	Most -- 95% I would say of our hospitals refer out to two different practices and they both do the full ABR.  The idea behind that we have had a lot of discussion at the state level and regional meetings when we had individual meetings the group decided once they had two screenings, two screenings was enough that means that they should have a full diagnostic.  That's what that group decided.  
	Are there any other questions?  
	>> Hi, this might be going a little further back in the presentation.
	>> JESSICA HOLST:  That's fine I should have said raise your hand whenever you have a question.  When we started.  
	>> I thought I heard you say if the testing wasn't complete -- I'm an audiologist so this kind of rang a bell with me, you don't fax -- well, wait a minute.  If the testing isn't complete, what happens?  
	>> JESSICA HOLST:  So in our information system when we first started the Learning Community and I should say the Learning Community started in the fall of 2017.  In the late summer early fall of 2018 we rolled out an update to our information system.  So for most of the Learning Community within our information system, if an audiologist had incomplete testing, which means they didn't have both ears, they were not able to enter incomplete results into the information system.  So they had to wait until the child came back to finish the testing to put in the complete results.  However, if the child didn't come back, one, that was an issue then follow-up results were never in there.  And two, if you -- if the child did come back and the follow-up results even partial were put in the impact was in the measurement of the birthing facility so in our new update now the audiologist is able to put in that incomplete information.  
	Before that they used a faxback system, a faxback form, with the incomplete results and sent it to the NYEHDI office so they at least had documentation of it until they could input it.  
	>> So that means that even if they do the tests, they do both ears but there's inconclusive results, can they -- those can't be put in?  
	>> JESSICA HOLST:  What's the pulldown.  If there's inconclusive results they would bring them back anyways and that can't be put in.
	>> (Off microphone).
	>> They would put comments into the system along with the results of the first diagnostic that they did.  And when the baby was going to come back for that second diagnostic test to be done.  Does that make sense?  
	>> Yeah, it does.  The reason I asked is we have a big problem with undetermined results.  And we get everything that comes in.  And they do sometimes write notes when the next evaluation is.  But we're trying to cut back on those undetermined results.  So I was wondering if one of the ways that you're cutting back is that they don't put the information in until they have complete results.  That's what I was wondering about.
	>> JESSICA HOLST:  That might work but honestly we're trying to document every Point of Contact with the provider to have a more clear picture of where the families ever going so if they don't return, we have a better opportunity to support them.  
	>> Thank you.
	>> JESSICA HOLST:  So I would say we're not taking that avenue at this time.
	>> Okay.  Thank you.  
	>> JESSICA HOLST:  Anyone else?  
	Does anyone else monitor fail rates or refer rates of their hospitals?  Is that something you're doing?  Okay.  
	So here we just provided for you, this is a sample of the referral list that we generated within the Greater Buffalo audiology area for pediatric audiologists.  This is something certainly that we will have to continue to go back to over time and make sure that it remains consistent and it's being utilized throughout the county not just for our early intervention piece but also for our school-age piece in addition for those early education years.  
	>> MICHAELAH TOWNLEY:  So out of another pilot project that we did at the state level, we partnered with our newborn screening program.  We actually had a poster on it upstairs.  We partnered with our newborn screening program and created a letter to send out to physicians to those kids that were floss to follow-up.  So -- that were Loss to Follow-up so as a result of that letter we created we decided to take an initiative and send this letter to all of the kids that were lost in the community to floss to follow-up to see if we could improve the follow-up in the Learning Community region -- improve the rate.  
	So out of this, this initial sendout, we found five pediatric offices.  In this region.  That were identified as having 20 or more kids that were Loss to Follow-up.  
	So out of this we decided to provide some technical assistance to these physician groups.  And scheduled calls.  And to improve the education regarding the NYEHDI reporting requirements and the responsibilities of the physician.  The responsibility of the physician -- the responsibility the physician has with the follow-up of the child, if they did not pass that initial hearing screening.  
	So some thoughts and final results of the Learning Community, we have a graph.  We are very proud of this graph especially with the infants referred to early intervention so as you can see the initial screening rate raised from 95% to 100% in the Learning Community as a result of the collaborations that became and developed through the Learning Community.  
	Our initial -- not our initial, our follow-up rate is still improving.  It was -- it raised to 19% from 14%.  But I think a lot of that would involve the kids that were referred to early intervention Child Find and they were still on the list so it was impacting that follow-up rate for the Learning Community but as you can see with our star, the infants that were referred or that check box that was marked in the system raised from -- it was 25% and it raised to 96% so it was a big improvement in this Learning Community.  
	For the fail rates, we saw some improvement.  
	They are slowing coming down.  We are continuing to work with those birthing facilities in this area to help with that fail rate and continuing to provide technical assistance to help these birthing facilities with their methodology.  Are they still implementing that two-stage community process.  Are they in a quiet room and not impacting the result of the hearing screening test.  
	Are they leaving -- I think we found that some of the screeners are leaving the results on -- they would walk out of the room and come back and it would be on for 45 minutes and I think that was actually a second follow-up call after the Learning Community was completed with one of our birthing facilities in that area.  
	So we're still seeing some improvement.  But it hasn't improved significantly.  So we are going to continue to work with these hospitals in red that have poor fail rates.  
	As a result of the letters that we sent out we sent out 50  1 letters to the -- 501 letters to the physicians in the Learning Community out of those we didn't get anything back from 245 but we want to focus on the positives of that letter.  
	160 came back with positive results.  
	55 were retested and had a result uploaded into the NYEHDI-IS system.  
	12 infants were diagnosed with hearing loss or their documentation was entered into the NYEHDI system.  
	55 of those letters the physicians scheduled follow-up for these kiddoes to receive a follow-up screen.  And 38 were data entry corrections.  So the hospital input the wrong initial screening so they had to go back in and input that the baby actually passed before they left the hospital.  And I think that's what we're finding is there's a lot of data entry that needs to be done because the birth Registrar is not entering in the most recent result before the baby is discharged from the hospital.  
	Also out of these letters we are working with regional pediatric societies we actually have a meeting with a pediatric society next week in the Buffalo region and we continue to reach out to those regional societies so we can schedule educational presentations to these groups and recommend and update them on the NYEHDI reporting requirements.  
	>> JESSICA HOLST:  Can I share one thing.
	>> MICHAELAH TOWNLEY:  Yeah.
	>> JESSICA HOLST:  So in reaching out to our pediatricians, in reaching out to our pediatricians, the intention in our NYEHDI-IS system it's linked to our health commerce system and chi-sqaured which is where all of the immunization records are but it's a click and they have to click to go in and the majority of the medical home providers we work with they don't even know that the NYEHDI-IS system is there so either they are doing a great job and they are tracking it themselves separately from following up on the chart reports from the hospital or they are not tracking it at all so we're hoping by educating our pediatric societies about the ease of going into that system that they will become more invested in monitoring the hearing screening moving forward.
	>> MICHAELAH TOWNLEY:  And hopefully that will help our follow-up rate and they will have results of those follow-up screens.  
	So some takeaways from the Learning Community so strategic planning and expectations are critical for timely quality improvement initiation and continued engagement of participants over time will help -- and it helps involvement with the Learning Community.  
	And with the PDSA cycles and the PDSA form that we showed you we want to consider using feedback -- a feedback form to acknowledge monthly participant investment.  
	>> JESSICA HOLST:  So for this Learning Community, we had a really great group of very dedicated families leaders and the way that the learning communities are outlined in requirements through grant is that it needs to encompass all of the professionals from 0 all the way to 6 and their our family support and parents but it was very difficult to provide a role of the family members in the Learning Community that they felt was enriching and gave them a clear piece of the puzzle.  And that's something we really want to continue to work on.  
	It wasn't enough just to say, this parent leader has been added to your team, some teams did a great job and included that family member but some teams didn't respond to the family member's emails of when are you meeting so that's really something we really want to work more closely with our parent leaders to give them perhaps a separate project to work on, in our next Learning Community we'll be working on updating our state brochures that came out of this.  Let's give the family leaders something that will be concrete to work on and move through.  Identify one item that they would like to work on as a team.  And then also to monitor their involvement with the professional group.  For us to check in to make sure that that's actually occurring not just to state that it needs to occur.
	>> MICHAELAH TOWNLEY:  And as Jessie mentioned, a lot of the hospitals got stuck in that missing data mud with the initial hearing screening.  
	So out of this, we want to focus on, yes, these are your initial hearing screening rates.  But them empower the birthing facilities to focus more on the measure of shifting towards follow-up and referral to early intervention to we can focus on those follow-up rates and those referrals to early intervention to make sure that information is getting into the system as well as we want to focus moving towards the future.  Like how can we impact this follow-up rate?  How can we impact the referral to early intervention.  So we're definitely going to use that in our next Learning Community.  
	We're also considering fail rates.  And how the impact of a fail rate can flood the outpatient facility.  How if there's high fail rates more babies are going to be sent to the outpatient facility and more likely to become Loss to Follow-up.  So we're hoping focusing on the fail rates, we can improve the Loss to Follow-up.  
	>> JESSICA HOLST:  So our last takeaway that we had here was utilizing our local pediatric societies for engagement of the PCPs.  It's such a large group.  And certainly we have our AAP Chapter Champions here at the meetings but in New York State we have three that cover -- one covers a gigantic regional area and then two cover the entire New York City and Long Island area.  It's not possible for those three individuals to touch each of the pediatric groups.  So how can we further engage those groups to No. 1 educate them about responsibility.  It's written in our public health law that our medical providers are our primary coordinating entities.  That they should be overseeing this entire process for the family.  And I don't think that they are aware of that.  
	And then in addition, developing their access to the NYEHDI-IS system itself so they are monitoring the screening results for the infants that are coming through their specific agencies.  
	And working and doing outreach with some of our pediatricians, with one pediatrician group, this was outside of the Buffalo region.  But we know that it's best practice if a child is referred by the AABR that they not be screened with an OAE and passed and pediatrician offices across the state are rescreening with the OAE and passing if we have a conversation which we did in the New York City area, a very large pediatrician group said, oh, we didn't know.  We didn't know that.  And they stopped.  And now they refer out to a pediatric audiologist but these types of conversations need to occur with a very large amount of people.  
	So that's going to be a big, big focus for us certainly moving forward.
	>> MICHAELAH TOWNLEY:  Yes.  We'll open up to questions.  
	>> I just had a quick comment on the OAE not so much a question.  So my son who is now 13 has auditory neuropathy when he was screened in the hospital the OAE did not catch it we went a long time until we knew we needed to request the ABR so I would say as you're getting out into the community I would encourage you to steer birthing facilities away from OAE to the extent possible.
	>> JESSICA HOLST:  Across the state a lot of birthing facilities are utilizing the AABR as their initial screen.  Particularly obviously those children who have risk factors but I was surprised by how many birthing facilities are utilizing that only.  
	>> (Off microphone).
	>> Everyone else either uses ABR or an accommodation of OAE.
	>> That's a good start but my son was a well baby and there were no risk factors so it just happened to be one of those fluky things that didn't really need to happen had they had different equipment.
	>> JESSICA HOLST:  One of our parents in the Buffalo region her daughter had the same exact situation so she has used her voice to share that through the Learning Community with our Buffalo facilities.  Thank you for sharing that.  
	>> Sure.  
	>> Hi I'm Vicki from Colorado when we started our Newborn Hearing Screening programs back in 1992, we automatically had an outpatient rescreen only because we have such a paucity of pediatric audiologists not only in the front range like the Denver metro area but no pediatric audiologists out in the rural areas and we're such a rural state.  
	And we had two hospitals that had chosen to have the infants go to an audiologist.  Their follow-up rate was around 25%.  The hospitals that did an outpatient rescreen, which really was easier for families, oftentimes they included it in the charge of the screen itself, they were around 80% follow-up rate.
	>> JESSICA HOLST:  Wow.
	>> So you might want to think about -- I'm not telling you what to do at all but you might want to think about you're probably working with Megan.
	>> JESSICA HOLST:  Yes.
	>> Maybe just take one hospital and just do a PDSA around doing an outpatient.  And I bet you're going to be shocked.  Because parents lose track of how to get to a pediatric audiologist.  There's -- it can be cost prohibitive.  And understanding that whereas just coming back to the hospital for a rescreen, they know where to go, they are familiar with the hospital.  So that's just a suggestion.
	>> JESSICA HOLST:  Thank you for sharing that actually it was interesting we're preparing for our next Learning Community that's kicking off on the 25th in the New York City area.  And the facility that was chosen because their follow-up rate was so high when we were talking with them about what they would share they bring their babies back for an outpatient rescreen.  At the time it didn't resonate with me as much as it is right now.  But I think we'll -- let's highlight that more in that meeting.  
	>> And if we refer directly to pediatric audiology, already our pediatric audiologists are sometimes six weeks out to get in.  I was just talking to my colleague Becky she said at Childrens it would be probably three to four months before they could get an infant in.
	>> And that's part of the --
	>> JESSICA HOLST:  Michaelah make sure you use the microphone for captioning.
	>> MICHAELAH TOWNLEY:  So that's part with the letters that we sent out and what we received back with those follow-up appointments, they were -- we sent the letters out in July.  The appointments were for November.  For those kids to get follow-up services so it's definitely hard and especially the one pediatric audiologist that is attached to the hospital.  They were already flooded with a lot of kids coming in for follow-up and now these physicians were making appointments so they were out into October, November and December.  
	>> Then you lose that three-month -- .36.
	>> MICHAELAH TOWNLEY:  Right.
	>> And what we found in Colorado was we have about a 4% rate of -- fail rate at discharge but when the babies come back only about 1% actually go on to audiology.  So it reduces the caseload for audiologists.  Hugely.
	>> MICHAELAH TOWNLEY:  Thank you Jess yes, sir yeah, thank you for sharing.  The comment was they had the same experience in Arizona, did I catch that?  Okay.  Perfect.  Thank you.  And Alabama as well.  
	Can you pass the microphone?  
	>> Yeah, so in Alabama the infants can have two screenings in the hospital and then they go for an outpatient screening and it's not typically in a hospital facility.  But the Department of Public Health has purchased equipment for some audiology facilities.  I work for a state agency, Children's Rehabiliation Service, and we see a lot of those infants.  And in 2018 out of 542  infants we rescreened, 17% needed diagnostic testing.  
	>> JESSICA HOLST:  Wow and the Department of Health purchased that?  
	>> They purchased not our equipment, no.  
	>> JESSICA HOLST:  Okay.  Not ours personally but --
	>> Many years ago I think there was some grant money for purchase of equipment.  I don't think that's the case anymore.  But some of those facilities still have the equipment that they got I think like in 2010.
	>> JESSICA HOLST:  In Colorado do most of the families come back to the birthing facility and then they go to the birthing floor?  I'm just trying to think logistically.
	>> Right it varies between hospitals.  But typically they do have a space.  Somewhere in the well baby nursery.  Where it's separate from the actual nursery itself before they do the outpatient rescreens.
	>> JESSICA HOLST:  Okay.  Thank you, thank you for that feedback.
	>> And we don't have audiologists in a lot of our hospitals anymore.  As hospitals have downsized or what they call -- I used to be a hospital audiologist -- right sized, they have closed their audiology departments.
	>> (Off microphone).
	>> I'll add one more thing, we have just purchased equipment that allows for screening AABR and diagnostic ABR within the same piece of equipment so we're going to pilot in one of our less busy offices really trying to implement you've already got the baby there.  You've got them hooked up.  If they refer, go straight to diagnostic testing so that's something we're working on trying -- you know I don't know if we're going to be able to do that in all of our locations across the state because I have facilities that see eight screenings a week.  So thinking about taking the time to build in diagnostic time for each of those it might not work.  But the capability is there.  
	>> JESSICA HOLST:  Right.  Thank you.  Are there any other comments or questions?  
	>> Your intervention number going from 25% to 96% was that just referral to intervention or was that actually IFSP.
	>> JESSICA HOLST:  That is referral -- the measure is referral to intervention.  But our county does very well on the surveillance and measures related to going through IFSP and beginning services by 45 days specifically for children with hearing loss because they are often tracked to one of two programs.  So that process moves pretty quickly.  Related to that, our audiologists didn't realize it was their responsibility to not only document that but also refer.  So the audiologists added wording stating, you know, as long as the parent does not object, we will make referral to early intervention on behalf of this family.  And we saw that those children, because we also do a data match with our EI program, they are marked as referred in our system and they are receiving service in our EI system.
	>> MICHAELAH TOWNLEY:  The early intervention system.
	>> JESSICA HOLST:  Yeah.  
	>> So can you clarify when your audiologist quote makes a referral, does that mean they have -- they send a paper, a fax?  Or can you just go over that one more time?  
	>> JESSICA HOLST:  Yeah so that is very specific to the county of residence.  In Buffalo they make a phone call.  And there is -- they can also make a fax.  But most of them make a phone call.  And there's an intake coordinator at each of our counties.  And she takes the family's information, make sure that they have complete information from the audiologists and then the intake coordinator contacts the family to begin -- well, to begin the -- we tried to change some of this wording.  To begin the process of identifying areas of need and support for the family and areas of strength.  Because in New York State, every child with a hearing loss qualifies for early intervention services if the parent desires, regardless of unilateral, bilateral or level.
	>> MICHAELAH TOWNLEY:  We also -- with the referrals to early intervention, in the -- in our system, in the New York State system, it's a check box.  But that does not automatically make the referral to the early intervention system.  So I think that's an education piece that we're working on, as well, to educate audiologists that, yes, you document it in the system but you also have to call the early intervention county that the child resides in or in the case of New York City, they fax a form to the county of residence of the child for early intervention services.  
	>> I just want to say congratulations.  You guys have done a really good job.  
	>> JESSICA HOLST:  Thank you.  
	>> I come from a state of 64,000 so I can't even imagine what you're dealing with so good work.
	>> JESSICA HOLST:  Thank you very much, we really appreciate that.  Thank you.  We will be available for questions, if anyone has any questions they want to come up after, enjoy the rest of your Tuesday and safe travels home for those leaving.  
	(Applause) 

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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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