AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
NORA WELLS: Thank you Dana. Well, first you need access to the Internet and then you get on the site and the way that you look at the data is constructed basically in three steps. You first select the geographic area that you’re interested in, so that would be either the state or the HRSA region, or national, and that’s the first layer that you’re going into. And then you select, in step two, a topic and then a question within a topic area. And each time you click a button at the bottom of the screen that says next. And step three is, you can compare sub groups to compare results for a certain selected question. So you could, for example, click on other to compare states, and then choose a second state.
If you’re in Arizona and you want to look at a state right next to you? I’m from the east, I don’t know what state you would look at, but some state that would be right next to you. And then, or you could compare your results to another state or region and, as I said, you can look at your states in relation to the HRSA regions. As Dana showed you, we are on the home page here and we’re selecting the actual survey data. And then we are searching the survey data. Now, we’re into the process of doing the selections. So here we are selecting the geographic criteria we want to look at. In this case it would be Utah . And then we’re indicating the topic we want to look at and here we chose to look at the core outcomes for children and youth with special needs.
The information from the survey has been organized into the core outcomes. The part that is outlined in red at the top is important to think about as you use the site. As you go in to search the data and you make your choices of geographic area and topic, you can always look at the top of the page you’re on and see what you have chosen, because this is a site that has a lot of information on it and sometimes as you go through, you forget whether you’ve chosen a state or you’ve chosen the nation and what exactly are you looking at. You can always look at the top and it will tell you what criteria you have selected and where you are. So in this case, remember we selected a state, it was Utah .
The year of 2001 we didn’t select because at the present time that’s the only data that’s up there but in 2006 when the second National Survey for Children’s Special Healthcare Needs data is in and we have it posted, you’ll have a selection there of the year. And the topic we selected was the MCHB Core Outcomes for Children and Youth with Special Needs. At present time with this National Survey for Children with Special Healthcare Needs, there’s data from this survey on four core outcomes: The Family Partnership in Decision Making, the Medical Homes Outcome, the Inadequacy of Insurance Outcome, and the Ease of Service Use Outcome. So in this example we’re going to look at the Family Partnership in Decision Making. And this shows you what you see for every query that you can do on any question in the Data Resource Center . You will get an actual table of the findings for the question that you asked and you’ll get a graph of the findings of the question you asked.
So in this case we have for the core outcome Family Participation in Decision Making and satisfaction with services, which is made up of questions from within the National Survey for Children with Special Healthcare Needs and we’re looking at it, if you recall for the state of Utah . We have four categories. We had the percent of the outcome not achieved or successfully achieved, which is in this case 63.7 percent of the families responding to a series of questions and when their answers are compiled in the state of Utah, there would be 63.7 percent who successfully, you achieved that in 63.7 percent of the cases.
There’s the confidence interview, the actual end of the families that were asked the question in this compile, and the weighted estimate, which is taken that number of families that were applied to this and applying weights that relate to the census for the state or the census for the nation. So in order to come up with a weighted estimate number of families that number represents. The weighted number of families for many of the questions I think could be extremely useful number. Remember we said you could actually do some comparisons, so in this case we’re looking down at where you do the comparisons. There’s a bar that you can choose, compare states or regions. We’re going to look at this data in relation to the nation.
So now we have the charts a little bit above we can see the graph below and this is comparing nationwide to the results in Utah . How does Utah ’s look in relation to the nation? So, nationally the results were 57.5 percent. The state of Utah the result for this particular core outcome was 63.7 percent. Going back you can again make another comparison. In this case we’re looking at the state profile key indicators and trying to look at the children with special healthcare needs whose current insurance is not adequate. You see the next button on the bottom of the page, if you were on the Internet, that’s what you would be pressing each time. And you can compare it for example by race ethnicity.
So how many children whose insurance was not adequate, how does it look if you look at it by race ethnicity? And here the break out is the same as the breakout that’s used in the census, Dana? And so, that would be Hispanic, Black, White, Other, Multi Racial. And so here you see a comparison of those who responded their insurance was adequate versus those who responded their insurance was not adequate. And it’s broken down by racial categories. And as you can see in the second bar of not adequate, the families of Hispanic background are indicating that their insurance is not adequate a larger amount of the time. That was for the state actually. We’re going to now look at the state of California . So now we’re comparing the race ethnicity of the child, the state of California , and whether the insurance is adequate or not adequate. So you can actually go through three iterations of subgroups when you’re looking at this.
I want to just mention one other feature of this site. And one of the fun things about this is to get on and play with it your self. And as I said, always remember you can get help and ask a question. One of the important features of this site is that as you go along, and as Chris was mentioning that save feature this morning I was thinking of this briefcase feature of the Data Resource Center site. You can get into this site and start looking at various pages and it looks really interesting and then what do you do? It’s on a screen and maybe you’d like to get back there someday but maybe you can’t quite remember how you got there in the first place. You can actually add any screen that you go along, and we’d urge you to do this, to a briefcase, which is kept online on the website and it’s saved for you. You can also print out a copy of any given page and you can actually cut and paste various pages. There’s other features, but add to a briefcase feature allows you to save it on a web based source that you can always go back to. You just have to remember your pass code word.
In order to set up this briefcase, the first time you have to set it up. You have to identify your email name and a pass code word. Is that correct Dana? And then once it’s saved there, as I said, all you have to do is remember that name. But that’s a really helpful feature, I think, because there’s so much data here and there’s so many interesting pages and so many interesting charts and you want to be able to get back to them. So this is an example of your briefcase and the way it would look when you went back into it at a future time had you saved a few pages. So if we had saved that page on the nation wide versus California adequacy of health insurance, you name it whatever you want. Or the Utah outcome number one, this is where it would be. And you can view it or rename it or delete it. Now, Dana is going to give you a little more information.
DANA ZIVE: The briefcase feature itself is also very nice if you have multiple people working on either Block Grants or any kind of proposal because you could actually name it to coincide with the state performance measure, or anything that would allow you to come back and access it at a future time. This actually is a very new feature of the site. We have added the ability to download the individual state data sets. Now, how many people here have actually gone on to the National Center for Health Statistics Site and tried to download their data? Good for you Nora.
NORA WELLS: I’m just encouraging everybody.
DANA ZIVE: Okay, well certainly people have and I’m not sure how you found the usability of that site or how well you were able to use that data. I’m seeing some heads being shaken so I’m, and I’m a data person and I had some challenges with this site. So what we wanted to be able to do was to take the exact data set that we had used to build the Data Resource Center . So this includes any of the variables that we put together and derived for outcome measures. All of it has all of its labels on it. It has all of its missing values identified. And it’s in both SPSS and SAS and when you click that link it will actually take you to a page that looks like this. You can select your state and download the exact data set that we used. Now this is the interview level data set. So these are the 750 children with special healthcare needs identified in every state. And there’s a lot of information embedded within here, but this may be something that maybe you don’t want to work on, but someone in vital stats or an epi person, you may want to be able to match to the information that you’ve seen reported.
You may want to be able to go a little bit deeper than the information that you can get on the Data Resource Center . But this actually gives you the freedom to do that. So, I’m really excited about this feature. I think it’s definitely more usable than some of the NCHS sites, for people who aren’t necessarily researchers or who don’t necessarily, really have a knack for identifying a flat or rectangular data file. If you have a need for a data file in another format, you can certainly contact us and we’d happy to meet those needs as you had them. So the site is not just access to data although that’s a piece that is certainly very important. There’s also resources for all data users. One of those is what we call the resource round table. And there’s information here about many things but one thing of interest is state and national initiative information.
Now again, this is state and national initiatives that are really focused on children with special healthcare needs. But it actually goes through each of the initiatives and lays out information about their policy statements, the centers that have been put in place. Gives a really good, wealth of information about definitions are any kind of information that you may need to lay out policy or programs to address the goals of the state and national initiatives. Also gives information about measuring the goals. So if the ways that different surveys have been used to measure them as well as key indicators from both the CSHCN survey and the National Survey of Children’s Health. If you ever have a question about how an individual outcome or indicator was constructed, please contact the Data Resource Center and we’d love to be able to tell you specifically which questions are being utilized for that.
Also you’ll see as an additional resource the link to the Title V information system website, so if you’re on our site and want to be able to really quickly go back and forth with the Title V site, you can do that from the additional resource page. There’s also information on innovative practices. We like to know how states are using data. We like to know what you’re doing both with the Data Resource Center as well as just with this information in your state. So this is some information that we have received both case studies, some of how data has been used maybe for legislative or advocacy information and you may be hearing from me or someone from the CAHMI staff if you have used the Data Resource Center fro a Block Grant or for any other information. So the Data Resource Center is always there to help and Nora is going to talk about that a little bit.
NORA WELLS: Let me just go over for a minute these pages, because we’ve given you a lot of names and numbers up here and I wanted you to know that you had a lot of this information in these handouts. The first handout, which is blue, talks about the National Survey of Children’s Health Data Resource Center . Remember that’s the one where the data is going to be up in April on the websites, not up there yet but it will be up in April. It talks about what kinds of topics are on that survey and at the bottom, it has the website of how you get that data. What color is that? The kind of beautiful color that somebody has a sweater on that I noticed in this color. This, salmon, there we go. The salmon page tells about the National Survey for Children with Special Healthcare Needs. That was the one that we’ve been showing you some of the pages from or the parts on the website that are from.
This survey is all up on the website already. You can utilize it. Ask a question about it. The address you need to get to that site is on the bottom of the salmon page. Okay? And it talks a little bit about the elements that are up there in that site. The green page talks about, okay, you leave this session. You go home. Maybe you’re in your hotel room tonight and you say I’m going to log on there. Uh oh, how do I do it? This is the quick guide to getting started, logging on to the site. It gives you the address you need to do. It tells you what features you want to go to if you want to search the data. And it has that diagram we were talking about of the three steps you’ll do anytime you want to ask the Data Resource Center a query about the data, search the data.
This one, the quick guide to query topics, is the way the data is organized on the site in terms of the topics. And it’s got some search ideas to get you started here, how to choose a starting point, how to search the data, and then what you might want to do with it. And this yellow one talks about how to save your results. Just as Chris said, it’s great when it’s up on the screen but then you want to be able to come back to it again. And this tells you a couple of ways of saving your data results such as the online briefcase and you can also save it to you computer directly. Okay, so Dana mentioned that there’s this feature that I, as a family leader, just love. It’s called ask a question. So you’re on the site, you look at a piece of data on here and you really don’t believe it.
You’re not sure where it came from. You want to ask another question. It doesn’t quite hit what you needed for your Block Grant. You needed a slightly different angle to the same question. So, you first of all you go to the home page where there’s actually a get help feature on any of the pages and it comes up to this box with ask a question. You type in you email address. You put any subject you want in help, tell me more and you send a message. And that message goes to the CAHMI staff who are incredibly responsive and in about a twenty four hour period, they will get back to you. And you can ask any question you want about the data. I’m not saying they have 100 percent of the answers but they’re really, really, really responsive to help people use this site and get other data they need of understand what they’re getting on this data. So I urge you to use that ask a question feature. And again, our hope in being here was to urge you to go on to this site and try it out. I think you’ll find there’s a wealth of information there and it’s one of the first times that this fabulous effort that our federal government has done to get this survey information collected from so many people, is now going to be accessible so easily to anybody. Tell your brother or sister to go on this site. This is really great.