Ninth Annual Maternal and Child Health Epidemiology Conference / December 10-12, 2003
CHRISTINA BETHELL: In the next couple of minute, what I'm going to do is try to take a little bit of what Stephen talked about and go to the next step of how can you actually get your hands on the data yourselves to go beyond some of the kinds of data that you could get and, a report or what have you. And we've been developing, actually with Stephen and Ginny and Michael and many others, an on-line data resource center that can help us take the children with special healthcare needs survey data from data to action. And we're very luck to have this data. I didn't really realize until this survey was under development that we hadn't had a survey on children with special healthcare needs. And of course, we were in the middle of developing quality indicators for HEDIS for children with special needs and realized that nobody really had decided how to identify them. And so we got into this business and we were very fortunate to have hooked up with MCHB and the National Center for Health Statistics to help with this survey. So we're going to keep going with it. So we know we need this data and the ideal developmental trajectory of the data, and each data element in this survey, first of all it had a good conception. It was well conceived, gestation and birth, and we know that that's not always the case. And I think we even know that that's not necessarily the case for every single data element in this survey.
So we know something about that and we can help you with that so that you don't run into using data in a way that is inappropriate to how the questions were asked or what have you. Then we need to get from data to information, and that's actually often a big leap. And we'll talk about that in the next few minutes. And ultimately we want that data to stimulate action, positive outcomes, evidence about what works and then ongoing action to improve care for children. So that's the ideal trajectory for these data elements. And where we need to begin is to actually start using the information. So taking the first step is the efficient, accurate and effective use of data, and that's what I'm going to talk about in a minute. So what we've been doing is trying to think about, well, what does it take to actually use data to stimulate system change, and all the indicators and all of the data, whether you're in the highest State or the lowest State, show a pretty big gap between what's needed and what's happening for children with special healthcare needs. So the first thing is you need to have a question that you want to ask the data that's actionable. In other words, if you got the question answered, there's something it would inform, either a current activity or an activity that you want to engage in. And that's actually a process that can sometimes be not so clear. Then you need to understand enough about the data, how it was collected, what the variables are and what's associated with what to start to bring together the data elements into measures.
For example, Stephen picked some indicators, he put them together based on his knowledge of what might be meaningful or what have you, you might have a totally different idea in the creative process about how you might do that in your State or how that would happen for you. Next, you have to be able to efficiently and effectively analyze the data, which does take a fair amount of knowledge and computer capacity and knowledge about how to do complex weighting and variable construction and things like that, as well as the statistical analysis. And then hopefully you get to the point where you can synthesize and summarize the data for the different audiences that you would engage in taking action based on the data. And then effectively tell the story. So the data resource center that we've been developing is meant to help with each of these steps, with the quest of using data effectively to stimulate system change. The next several slides are going to just be slides of the actual website, which is live now, although elements of it are not completely put together yet. So here's the webpage on the National Survey of Children With Special Healthcare Needs, and there's a number of things you can do here. Primarily it's designed to help you to directly query the data yourselves, as well as get standardized reports, including some of the reports that Stephen's putting together we can have available here.
I think. Is that true? You can join discussions with other people using the data, ask a question. You can do that right now, ask us a question, and make a suggestion about either the website or about how you'd like to see the data analyzed, or what have you, as well as getting highlights about the data and how it was collected. For example, we know that the CDC has a way of explaining how the data was collected, that is accurate, and then what we're trying to do is working with people like Nora Wells and her team of family advocates, as well as State leaders, how can we communicate that to you so that you can understand it and turn around and communicate it to other people, or at least have a sense of how the data was collected? It's a fairly complex sampling strategy. So we've been working on how to create different ways of sharing about how the data was collected so that it's a little more user friendly. So it's similar to what's on the CDC website, but it's more user friendly. And maybe Nora can tell you a little bit about what the gap is between what's on that website and what's here. So there's a number of materials saying, what is the survey, how was the data collected, and so on and so forth. And then we'll have highlights, a number of highlights from the survey that we already know people want to know about. A lot of those are just standard reports on the indicators, some of the things that Stephen was talking about, State profiles on all the various indicators that align with the National goals for children with special healthcare needs, as well as issue briefs. For example, our first issue brief is anticipated to be on the National health goals looking at racial and ethnic differences. So those things you can download and so on, but that's different than being able to actually query the data yourself, which we hope that we will engage people in that process of using the data themselves. Here's the profiles, for example. So the query tool is under development and expected to be live around March and what it does is allows you to do up to a three-way cross tab. So, for example, if you looked at Stephen's maps you may have noticed, at least I noticed, it looked to me like the States with the lowest percentage of children with special healthcare needs were performing the lowest on the indicators. It looked that way to me.
The West Coast and some of the other areas in the South. And so that might be of interest. So anytime you want to have the results by another group, or you want to look at it by a HRSA region or urban rural or anything like that, you're going to need to get the data and start to cut it yourselves. And so what we can do is make sure that the data's downloaded, weighted, all the variables are constructed the same way, labeled the same way, and all you have to worry about is going in and doing some of the analyses. There's quite a bit that you can do up to a three-way cross tab. If you want to do multi (inaudible) analysis then we have to talk in an effort to get the data. But fortunately you'll be able to download the data set already weighted with the variables constructed so that you can do that without having to do all those up front things. So that's another service, is you'll be able to download your State's data and be able to go from there rather than spending often the many, it could be months actually, getting the data weighted and I don't know, Stephen, my experience is that even constructing a variable like child impact, there's many, many decisions that have to be made about how to construct the denominator, making sure you scored the screener the right way, and all of those things.
So those sorts of things will be available so you don't have to do it. So these are just illustrations, so for every question you have, you'd select a unit of analysis or what level you want to understand that question at, and then cut it by different subgroups. And you can cut it by up to two different subgroups. This is just a little recipe. So we know that's not enough. Once you collect the data you have to start engaging players in the process of considering the data and taking action based on it. So other things that will be in the resource center are meant to help you do that. Meant to help give you ideas for how to convene different stakeholders and cut the data results, or present the data results in ways that might be relative to those different audiences, whether that's policymakers, or families, or providers, or health plans, or whatever groups you want to engage. And how to explain the information in a way that both is accurate, so that it's not being explained in a way that is inaccurate given how the data was collected, but hopefully impactful. So there's a larger website in which the National Survey on children with special healthcare need portal lives and it's an overall website on children with special healthcare needs. And here we can learn about who are children with special healthcare needs, what are the National health goals, how to involve families, and how to use the data effectively. We have a resource roundtable, which will collect innovative practices from the field. Hopefully you'll start to give us some of your ideas about how you've been able to use the data that other States can learn from. And we'll have examples of family leaders using data, State leaders using data for the various purposes that they have, as well as making sure that we connect up with other resources in the system, and then current research. There will be skills building workshops.
We're going to start out with one called "Measurement 101" which helps to train people really on how the indicators, first of all, are developed and then how you might start to think about developing your own indicators or going beyond the indicators. For example, we can also talk about all the wonderful things you can actually do with a two-by-two table. You can create lots of different statistics and analyses that are powerful depending on what your question is. So we can in common language help you figure out how to do odds, ratios or predictive values, or different things, but using language that will be anchored to the kinds of questions that you're trying to answer. And you can ask a question and make a suggestion, which I encourage you to do now because this is in a process where we can make changes. And it will, of course, be able to make changes all the time, but at this point it's a good time to share whatever you can about what you would like to see in a resource center like this. So the next step after using the National survey on children with special healthcare needs is ensuring that similar data is available for multiple layers and audiences. So in this website we also hope to help you do some work on collecting data below what's available in the National survey using other tools, like the CAPS, Children With Chronic Conditions tool, and other surveys that are out there. Or how would you apply the National Survey On Children With Children With Special Healthcare Needs locally so that you could get more information than just at the state level, which is often not sufficient? So to maximize the information and to stimulate action, we need to think about National data, State data, community and so on. And there are tools and methods that can be brought to bear that we know about now that can help you do that. So we'll be sharing current research on identifying children with special healthcare needs, maybe how that can be done at the health plan or provider level, in addition to in a population wide survey, measuring medical home using the CAPS data, which is collected by many States right now.
And starting to fill in some of the blanks so that when you get the National data and get everybody excited about taking action and motivated to look at more refined units of analysis and more refined data, you'll have some resources to think about how to do that and other resources. So many of the tools and measures that are available are in the child help toolbox and many of them developed by the CAHMI, so because the CAHMI is supporting this, we'll be able to help you use a lot of other tools that will help you build on the findings from the National Survey. So for more, I'm actually ending early. If you want more information about the website, just go right to the website. And all I ask is that you know that this is a soft launch and we're purposely launching it here with this audience with the idea that you're the exact folks we want to get input from. This is Deborah back here and she's manning the booth. If anybody hasn't seen the demo of the data resource center, you should go see it after this during the break. Deborah Read and I are overseeing the development of this resource center along with many other colleagues including Ginny and Stephen and Michael, of course, will be helping advise us. Make sure we've got the technical pieces right.
Nora's going to be leading up the family input piece. And then we'll have a State leaders group as well on an ongoing basis. So I encourage you to either go to the website, you can also go to the CAHMI website if you want to learn a little bit more about that, or you can e-mail us directly. So there's lots more to say, but what I'd love to encourage you to do is go by the demo booth and do the demo, give us some of your ideas, we're doing a drawing at the end of all this and sending you a special gift from Oregon whoever wins. So go and at least drop your card in and take a look and give us your ideas and start making sure we can help you use this data as best as possible.