ROUGH EDITED COPY
EHDI
PACIFIC SALON 6/7
"HOW TO SUPPORT EHDI INFORMATION SYSTEMS:
A LOOK AT A NEW CDC RESOURCE"
PRESENTERS: ERIC CAHILL, MARCUS GAFFNEY
3/14/16
2:00-2:30 P.M.
REMOTE CART/CAPTIONING PROVIDED BY:
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PO BOX 278
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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.)
> Hello!
My name is Stephanie. I'm the moderator for this session. I want to make sure that the session goes smoothly. And you see there's evaluation forms. Can you please make sure you fill those out? And this is for the first presentation and second presentation will be what you fill out on the bottom of that form. So after this presentation, please leave it on the chair, and then I will go ahead and gather them up.
Okay?
The first presentation this afternoon is How to Support EHDI Information Systems: A Look at a New CDC Resource.
The presenters name is Mr. Eric Cahill.
Enjoy the presentation!
> Thank you. My name is the Eric Cahill. I'm with the CDC EHDI Team. I'm a health scientist on the team and my background is clinical audiologist and my partner, Marcus Gaffney, a team lead, we worked on it together. I'm representing the both of us, and actually representing the team, a team effort we're working on. So there's been a lot of hands involved in this. So how to support EHDI Information Systems, a look at the new CDC resource. A lot of what we do, when we ask you out in the states do things, or we do things and sometimes you scratch your head. It's not just to make you do strange stuff, but really it's a big picture goal for what...
[ microphone interference ]
And, you know, what does it take to have success? What does it take to get to the point where all your infants are identified, all those deaf and hard of hearing infants are identified. There's a lot of moving pieces. There's a lot of steps in the process. There's a lot of collaboration as well. How do you take a baby in that well-baby nursery, a baby in the NICU, how do you take that baby from hearing screening before one month, diagnostic assessment before three months and appropriate early intervention services before six months. How do you get to that point?
I think we've seen variations of this picture for EHDI conferences. You know, sometimes it seems like the EHDI process is a big main, right? How do we get there?
Some would say that at some point there's a little miracle that occurs and that's how we get where we will be, right?
I would suggest to you that it doesn't take...
> Test 1-2-3.
Some things do take a miracle.
Test 1-2-3
> Are we ready?
All right. So some things do take a miracle.
Let me suggest, though, from an EHDI standpoint, it's not always a miracle, it may seem like that, but sometimes not always a miracle, to take that infant from screening to diagnosis, to early intervention. It doesn't take necessarily a miracle, and EHDI information system that allows you to move your data through those different points and allows you to actively use your data is the way to fill in the missing puzzle piece. That replaces the miracle. Your EHDI information system can be a real powerful tool. It can support you in your efforts to make sure that every infant in your jurisdiction is receiving the services that he or she needs, and it can also help you to identify areas to target for improvement. We're okay?
Thanks!
A couple of things to think about, a couple of key factors. You've got to be able to capture complete high quality data. You've got to have good data. You've got to have good data, I'll say it again. Inaccurate data doesn't help your program and can actually be a hindrance. It can impede the delivery of services. Also another thing to think about is making use of your data. I know we've heard Marcus say again and again, it's not -- we're not asking states to collect data, so that they can fill out the infamous follow-up survey, right? It's to be able to have a data set you can use to help ensure that things are happening for tracking and surveillance, so you can have data to evaluate your program for effectiveness.
What did he do?
Hold on. There we go.
So just to give you a little bit of background, in September of 2014, we convened an expert panel. We brought in some experts in the EHDI field from around the country and down to Atlanta and they gave a real good thorough look at the things that we're doing, the activities that we have and the projects that we're on. And among several recommendations, one was to do more to provide technical assistance on data collection and data management by improving the communication with states and territories.
And I don't have the book with me. So back -- we have this, and some old-timers may recognize this book, right? This early hearing detection intervention Program Guidance Manual, I circled the date on that, February 2003, so it's been around for a little while.
And really focus of this Program Guidance Manual was to assist states and other stakeholders in developing or enhancing your program as a whole.
You know, there's a chapter in there about developing a website, a chapter in there about writing reports. You know, there's a lot more programmatic aspects to this program manual. EHDI programs have evolved over the last 12, 13, 14 years, 13 years I guess. And the manual, this book, hasn't changed at this point. We started talking about, you know, what does the EHDI community really need? We wanted to come up with something that could help you in your efforts, something that would benefit new EHDI coordinators as well as experienced EHDI coordinators, something that we were going to actively support, and we came up with an idea for a manual, and EHDI Information Systems, a Technical Guidance Manual, a new tool that we feel like can assist you in this effort to take those infants right from screening to diagnosis to early intervention.
Just a few other points about this Technical Guidance Manual. We know that NCHAM has an E book and we're not trying to replicate that effort at all. The NCHAM eBook does a very good job describing what an EHDI Program ought to be doing. We are focusing more directly on the information system component of your program.
It's not going to be printed in hard -- in paper like this. It's going to be a web-only resource, but we think that's good because that will allow us to give more timely updates and have some more flexibility. In the future, there may be some chapters that we're going to expand and go more in depth as the field changes, as technologies and things change with regard to health information technology.
So the fact is, online, it's going to give us flexibility to be able to do that and better serve EHDI programs, state-based EHDI programs. As I said, the 2003 manual, its purpose was to really take a comprehensive look at EHDI programs. We're looking more to develop and enhance EHDI Information Systems. Again, to be able to -- this is one of those components with all the moving parts that is really critical.
Our primary audience, as I said, is for new EHDI coordinators, really looking to orient themselves and use the data system that they have. An veteran EHDI coordinators that really want to assess and modify their existing system or perhaps purchase or build a new system.
What does it take to assess the readiness of your system to be able to do some of the new and interesting things with regard to data exchange?
Our objectives with this manual, as we were kind of you know, developing that creative objective process, we wanted to describe the aspects of a sound and efficient EHDI data system, what do we think an EHDI information system should be? And what components -- what are the components of a third data quality evaluation plan? How can you evaluate your system and make sure it's doing what you intended to do?
And then the steps needed to either modify your existing system or obtain, as we said, a new system. How do you determine if your system is ready to do what you want it to do.
How do you determine if you're ready to add those enhancements and modifications?
The chapters that we have identified, chapter 1, the EHDI information -- kind of an overview of the EHDI information system.
We're going to look at data collection and, again, that gets back to the idea you've got to have good data as the foundation to be able to do what you want to do. We're going to look at tracking and surveillance. Data use and dissemination. Again, we want to get back to that idea of using your data, having that data as a tool to help you take those kids through that process, that EHDI process, 1, 3, 6.
There's a lot, especially with a lot of the emerging HIT capabilities. There's a lot to be said now for privacy and confidentiality, protecting that data, especially as we move to being able to collect more individualized data, we really need to ensure that we've protected the infants, the families in our jurisdictions. There are some standards out there for that and we're going to share some of those standards with you in this eBook.
We have a chapter on monitoring and evaluation. We have an evaluation fellow that joined our team and has really helped to write a good thorough chapter on the importance of evaluation and how to do it and how to do it properly. And then finally, Chapter 7 is a health information technology, and kind of an interoperability chapter to help you understand some of the emerging technologies and emerging capabilities, just to share a little anecdote, before I joined CDC, the EHDI team at CDC, I was in Kentucky with their EHDI Program. And I was there when -- so their information system is called KY-CHILD, and I was there as that was being developed and we would have meetings in Frankfurt, with the IT developers. And the real challenge was we knew what we wanted, and the IT people knew what they could do, but getting it so we could talk the same language was a real barrier. And so that's why we want to throw in this chapter 7, to help you learn the language so that you can ask the right questions and describe properly to your IT developer whether that's a vendor or someone, you know, in your agency.
Chapter 1, some of the objectives that we identified, we want you to be able to understand the purpose, you know, why is it important? What is your "why"? Why do we want a complete EHDI system? What does that look like? And then the planning process. It's not just something that happens. You've got to kind of plan for how you're going to develop your system and what it takes to maintain that system as well.
Chapter 2, our objectives are to describe the different options to collect data that populate your data system.
Again, you've got to have good data to start with. And you've got to have good data to populate your system. What data items do you need to collect from the different providers, the different entities in your state? And why do we collect the different items -- data items that we do?
From a Chapter 3, on tracking and surveillance, we want to look at -- or we're going to look at using your EHDI system so that you can know what the status is of every baby, every infant born in your jurisdiction using your EHDI system to find the gaps in your data collection process. What are you missing? Where are babies falling through the cracks? And then finally using your EHDI system to inform providers and families and other stakeholders about how they're doing. Chapter 4 kind of melds in from what we saw in Chapter 3, but data use and dissemination. It can help you coordinate care for every child born with hearing loss in your state. Presenting the status of your program to stakeholders, that's an important part of what you're doing and you can use your data to help strengthen your argument for why you need extra funding, why you need to be able to have hiring authority to get more staff. Those things are critical. And data can help to tell your story and make your argument.
Informing providers about their performance. How is this hospital doing? How is this audiologist doing? And how are the particular practices doing at submitting data to you? You can use your data to assess an evaluate your program performance.
And then also, you know, I know some are doing some research. We've got a data set here that can be used.
Getting back to the privacy and confidentiality, understanding and being able to -- being able to understand and comply with the state and federal regulations that are going to affect what you do. Understanding the various data security standards. There are standards that have been developed. T standards with regard to data security, patient privacy and confidentiality. Those need to be accounted for and how do those affect and impact you know, your planning process and what you want to do with your system.
Chapter 6 is monitoring and evaluation. There is a difference between monitoring and evaluation. We want you to understand that evaluation is monitoring your data and then making some changes and seeing how that improves your data.
Understanding the importance of actually doing an evaluation on your information, your information system. What are the key steps for developing and implementing evaluation plans and how does quality improvement play into that? How does this relate to what you want to do with regard to your evaluation?
Chapter 7, we want you to be able to understand the use of electronic health records, interoperability standards and some of the technologies that can really help to optimize your efforts of tracking and surveillance. We want you to be familiar with some of the HIT terminologies and understand the intent and how to use these different EHDI operability standards. We want you to determine whether your system is ready, interoperability standards.
And then be able to communicate your needs, your HIT needs to the appropriate parties, to the developers, to the vendors, to the people you're working with on your system.
Got to be able to ask the right questions and describe accurately what you want so that the developers that don't know anything really about EHDI, right, they need to be able to know what it is you're trying to do.
We're going to include in some appendices some core and secondary items as we're urging states to move to be able to collect individualized data, what data items are those?
What are the EHDI-IS functional standards? There are standards that we have developed. You know, what should your system be able to do? How should your system function? And then what are some of the other operability standards? Just to tell you a little about where we're at, we spent some time determining what chapters we thought were important, determining as a team what those objectives ought to be and the questions that we wanted to answer. We shared this with a few EHDI state coordinators who graciously reviewed our proposed outlines and offered some suggestions, told us what they thought wasn't important, what they wish we would add and we responded to that. We're working with a contractor to write the manual for us so that each chapter is written in the same language, written with the same voice. We're in the process of clearing those chapters, editing those chapters I guess you could say and clearing those chapters and editing again. In government, that's kind of a never-ending process. We have a hope to publish this by the fall. It's our hope. So that's where we're at. We just wanted to give you an update on this new guidance manual that we expect to be coming out. It's our hope that this will help you in your efforts to identify all those infants in your jurisdiction with hearing loss and make sure that they get the services that they need.
That's really why we do what we do, right? Is to make sure those infants are identified and keyed into the right services, services the family and providers determine are most appropriate. With that, are there any questions?
Will the core element change?
Well, I would say they're probably not the same as in the original manual because that's something that the data committee is continually working on, but they won't change just for the sake of being in the core manual. Does that answer your question?
I saw another hand up. Yes?
We're expecting the fall of this year.
>AUDIENCE MEMBER: [ off microphone ]
> Audiology backgrounds, and I don't know all the HIT link go all the time. I've learned a lot, but you've got to be able to talk the same language, so that they can understand what it is -- so developers can understand what you want. They'll do what you ask, but they've got to understand.
Any other questions?
>AUDIENCE MEMBER: [ off microphone ]
> Yes, that's right.
Anything else?
The question was: Are those functional standards? The functional standards are on our website, on the CDC website, but we're going to put those in the manual as well.
Any other questions?
Thank you very much.
[Applause]