A Quality Improvement Study: Reducing LTFU Through Systematic Outreach and WIC Collaboration

ROUGHLY EDITED COPY

EHDI

Pacific Salon 3

Casey Judd

March 15, 2016

11:00-11:30a PT

CART/CAPTIONING PROVIDED BY:

ALTERNATIVE COMMUNICATION SERVICES, LLC

PO BOX 278

LOMBARD, IL 60148

"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."

> I just want to let people know this is a repeat of the CDC webinar. That webinar wasn't captured and made available online afterwards. We thought we'd give folks another chance to see it at the conference, but you're totally invited to leave if you've already seen this once before. Nobody?

I think I'll get started. I have a few announcements before I begin. My name is Elizabeth Seeliger. I've been the state EHDI Program Director for the last 15 years. I hail from the state of Wisconsin where flowers are just beginning to bloom, instead of, like they are here, all over the place. As I said before, this is a remote of the CDCsponsored webinar that occurred in the winter. If you already attended that webinar, feel free to leave.

Also, I was notified that although this was approved for a 30minute session, the session that was scheduled to come after this was cancelled, so I'm still going to attempt to get through my slides in 30 minutes, but if anyone want to stay and have a discussion or have like a more in depth conversation about the process of getting this started or set up, I'm happy to stay for that extra half hour. Sound good? Please feel free to leave after 30 minutes if you have another session to attend.

So, we're going to talk about sort of looking at our collaboration. Our EHDI WIC collaboration. Some of this was sponsored by a research grant, CDC research grant that was administered by the RDC. And the other results of the research component was published in the first JEHDI article. I don't know how many of you went to the JEDHI section. It's a peerreviewed journal article. You can access it at JEHDI [captioner missed the website].

This is the program work we did around integrated JEHDI and WIC together, I'm a super informal presenter, so I'm happy to field questions as we go along. Please feel free to interrupt me at any time. I'm happy to go with the flow.

All right...so...of course, the first, most important thing about WIC EHDI collaboration is making sure that all of your stakeholders are on board and in alignment with what you want to do. So, we had a WIC EHDI UCEDD partnership. Does everybody know who your UCEDD partner in your state? We had our UCEDD partner help conduct the research of that.

And Rebecca Martin is our study coordinator. She is employed by the Wisconsin Sound Beginnings program. That's how this was linked together. Then, Lisa Murphy was our main liaison at the state WIC office. Does everybody know what WIC stands for? Okay, I'm going to use the abbreviation of that word. Is there anybody in the room that's from a WIC program? I'm assuming not. Okay...

We had, you know, very key partners, Sound Beginnings is out of the Department of Health in our state. It's administered collaboratively through grant contracts. I'm sure this looks very familiar to many of you. So we have an existing contract with UCEDD. We have regional follow through coordinators that work out of our local Health Department. We have western, rural, Health Department where we have a follow through coordinator and urban, city of Milwaukee Health Department and we collaborate with our, we have one state laboratory of hygiene that does all of our blood screening tests. That's one of the ways our data system operates. And obviously, the work with partners at the table and very strong buyin from them.

So...our actual research objectives was to look at whether or not this partnership, this collaboration could even happen and then to share the results of what that collaboration resulted in with all of you and then to really discuss the lessons learned and future direction and both the significance of the impact on EHDI programs, that's what we all care about. But also, really looking at those balanced, kind of measures, for WIC, because WIC is often asked to do a lot of things. Other than provide supplemental nutrition services to women and infants, okay? They're often asked about immunizations and we wanted to make sure that the effort was actually worth the ask, does that make sense? So, we'll look carefully at that in the quality improvement lens of that WIC statewide implementation forevermore without checking back in with our data and making sure it was resulting in improvements.

So our actual research goals was to test the efficacy of two different kinds of WIC collaboration with the EHDI program. So we designed two different alerts. One was what we considered to be a much more passive role for the WIC program, where they would simply be alerted that a family hadn't gotten to followup services and they'd give the family a constructive letter saying it's important to followup, here's some places you can go to get help in getting followup, but all the WIC staff was really required to do was give the family a letter every time they interacted with the family until the alert was removed.

The other one was a much more active care coordination role. We asked the WIC staff to contact the Sound Beginnings Outreach Specialists while the families were there in the office and work as a team to get the family into followup. And then, really to evaluate the impact of those, of those strategies and anything else we learn along the way. Because this is very iterative research. That's my biggest challenge, working in an EHDI program in public health where the thing I care about the most is babies getting services and families feeling supported. When you're doing research, sometimes you're sort of confined to the model, right? That was very hard for us. Some of the impacts of our research is that we changed it. We thought it was very effective along the way and we wanted to get families of care. So, that's one of the down sides of our research, I'll say that right away. Is that we actually change pieces of it along, kind of of throughout their research process. To meet what we thought was best practice services.

So...I think with this setup differently in different states. In Wisconsin, we have 72 local projects. With more than 200 clinic sites and WIC often provides nutrition, education, breastfeeding education, supplemental nutritious foods and other health and nutrition services for children and families.

So, everybody's pretty familiar with what WIC does? Okay...great. I was, I'll say, superficially aware of the purpose of the goals of WIC that I didn't fully understand how it operated until we sat down at the table and started talking together. Like most of the nation, about 50% of babies born in our state are WIC eligible.

So...when looking to apply for this research grant, we realized the only way this was going to work is that WIC and the Sound Beginnings program could sit down and agree on operating principles for our work together and have a signed data sharing agreement that would allow us to access the WIC database. That was some of the feedback we got very Oriole from WIC. They weren't going to reach out into our database to find out that kids were not following up. That we really needed to use the system that was already in place and they were already comfortable with if they are going to do anything at all. In order for that to happen, the state EHDI staff had to have administrators from the WIC database. We had to have some really sort of confined roles within what we were going to do in their WIC database. Even if we found they had a new phone number for families, we could use that to followup with the family, but we couldn't take that data and put it into our data system. That had to be kept separate, okay?

So...a lot of this collaboration work is really negotiating like what is possible, what's going to be helpful to us, what's going to get us to our end goal, even if it's not optimal and starting there to build that relationship. So, we did get access to the WSB WIC MOU. We have to go through the WIC annual database training every year. We started to grumble about that. But we still have to do it like all the local projects do. But it does give us access to this statewide data system. In Wisconsin, it's called Rosie. It allows us to communicate and coordinate the EHDI care needed for those babies that didn't happen to work during the screening and haven't received followup by 30 days of age, okay? We've created our own at risk for loss to followup definition. That means they didn't pass the screening and they haven't had documented the results, put it into our data system by 30 days of age. Okay? That's when I talk about at risk for loss to followup, that's what I mean. And our MOU is very specific. Those are the babies we could access. We couldn't look at any baby in the system. We couldn't look at babies who were never screened. It was only those babies at highest risk for loss to followup.

It allowed our staff to place, they already had a function within the WIC data system called an alert that. Alert pops up for lots of different things. Baby's due for immunization. As soon as the provider logged into their system, if they have to acknowledge they've seen it before they get into the regular system that they have to do their work in. We just used the alreadyestablished function of the WIC alert to add the EHDI kind of loss to followup information. Any questions about that? Do you all know if your states have their own data system and whether or not there's any sort of alerting process in there? Not public health alerts. Typically they're their own alerts they put in themselves to remind themselves that something needs to happen. They missed their visit, they need to make sure they get their weight checked at this time or something like that. No other public health alerts right now.

That was another risk that we were asking them to take with us, right? If this was super successful, what's to say that another pebble health program will ask them to put an alert for them in there. So, thanks for asking that question.

So, did you all know that there's handouts of the presentation on the table? Do you think you could pass them out? I printed them off. Okay, so I'm going to get into the Wisconsinspecific data and try not to put you to sleep with this but in 2010, Wisconsin had 200 babies that didn't pass newborn hearing screening and didn't receive followup care. On you are state birthrate is 66,000 to 67,000 births a year. We had sort of gotten your loss to followup rate down to 26%. It was still too high, but not terrible. And...at that point, you know, you start to really try to figure out how to target you know, those last 200 babies, what can we do to make a difference for them.

And so, we hypothesized, really with input from our local community partners that maybe those babies who are at risk for loss to followup are the same families who are accessing WIC services. And the paper I was telling you about is about some of our assumptions about WIC families and sort of the socioeconomic barriers to accessing care and some of the, some of those things that we thought okay, those sort of risk indicators make them at risk for other kinds of disparities in public health. Maybe that's true for EHDI as well.

Our papers show that was not true. We dispelled a lot of our myths about our target population. That may be completely different in your states. But it was a really good reflection of checking our own assumptions about what's causing people not to get followup.

We designed a threestep followup process. Some of you may have heard of this already. We call it 3SFU. Part of the 3SFU followup, loss to followup prevention is this WIC alert. It's hard to tell what's causing them to actually get followup.

We have a webbased followup system. We can see status realtime the providers enter in. We use that to identify those kids who didn't pass the screening at birth and haven't gotten followup by 30 days of age. Those are our at risk kids. Those are groups we're trying to followup on. Once we know who our population of at risk for loss to followup is, then we go into the WIC data system and see which of those kids are also accessing WIC services. Make sense?

So we predicted that would be a high number. A lot of kids at risk for loss to followup would be accessing WIC services. That was a major assumption of our research project. You'll hear me talk about assumptions a lot. Part of quality improvement is that we make these assumptions and check them. Make sure the data supports what we think is a problem and solution.

So, our WIC alerts were designed, I told you this already to be more passive and more active. We called those two different kinds of WIC alerts to be WICA and WICB alerts. They were really targeted to what we considered our highest risk populations. At the beginning. This is what the WIC alert says. It was very important from the WIC staff that it be short and concise because as I told you before there, are other alerts that they use this box for. They didn't want us filling up their box, right?

So we had lots of iterations of what this needed to say. Baby did not pass newborn hearing screening and needs followup. Give family hearing screening followup letter and review it when you interact with family.

We went back in and removed the alert when the family actually got to followup. There was some onus of responsibility on our EHDI staff to have a method, oh yeah, this was a WIC kid, now the child got followup, we need to take the WIC alert out.

So, in 2011, we designated 61 of the 72 WIC projects to receive the WICA alert. We were very mindful of the extra strain and kind of workload you're proposing for the WIC staff and we really wanted to start small with what we considered the more intensive alert strategy. We created those letters, English, Spanish and Hmong. We provided a lot of statewide expectations to our WIC sites. We got on their monthly calls and the WIC director was great. She has reminders in the letters. And we distributed hard copy letters across the state. They had like a WIC share kind of secure website for the WIC providers and we made it available as well.

So WICB alert reads, baby did not pass newborn hearing screening. Wisconsin Sound Beginnings can conduct a hearing screen with the baby's next WIC appointment. Call us to coordinate care.

In the beginning, we hypothesized when the family was already going to be at WIC, they could just come there and do the hearing screening. I'm not going into too much detail about this, but our 3SFU process, the first step, we make sure it's not a data entry issue. That the baby didn't get followup care, but they just haven't reported it in the followup system.

Step two, we actually contact the family and encourage them to go back in to traditional systems of care for that followup screening. Okay? And oftentimes if the family can't go back into the traditional system of care, as our last resort, our regional specialists have a hearing screener and they can go and do inhome learning communities. It's a very high cost intervention. For our EHDI staff, our staff of five, parttime employees, and so, it really is like a funnel. We want to keep that intervention to be the sort of intervention of last resort. But we thought if we could do this in conjunction with the WIC visit these are our hardest to reach families, maybe we can combine them.

So in the beginning, in 2011, we had 11 WIC projects doing that alert. We chose them because they potentially served a high number of babies at risk for EHDI loss to followup. They included our largest urban setting, the still of Milwaukee. Which has like eleven or twelve WIC sites in the city of Milwaukee. And we had rural settings. We got a lot of reports from the local providers. Maybe partnering with WIC would be a good way to serve those families. We targeted it based on those assumptions.

The one intent of the WICB was to see if the rescreen was coordinated with a 45day WIC initial certification visit. So, there's the deal breaker, okay? Here's our little schematic of our 3SFU process, medical outreach and we'd divide those kids not in the WIC or WICA or WICB studies, okay? We did that family outreach also. If none of that worked, we'd do a regional screening, either in the home or in the learning environment with the WIC visit.