MCH/CSHCN Director Webcast
CHRIS DEGRAW: Good afternoon and welcome to
mchcom.com webcast coming to you from the Maternal
and Child Health Bureau in
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Those of you who selected accessibility features when you registered will see text captioning underneath the video window. At the end of the broadcast, the interface will close automatically and you'll have the opportunity to fill out an online evaluation. Please take a couple of minutes to do so. Your responses will help us plan future broadcasts in this series and improve our technical support. At this time I would like to introduce Dr. Michael Kogan from the bureau's Office of program development who will introduce today's speakers.
DR. MICHAEL KOGAN: I want to introduce our
two speakers today. Our first speaker is Dr. Christina Bethell.
She's the associate professor at the
On oral health,
overall health and physical activity and obesity. And the data for
this survey should be available, we are estimating at this point, around the
beginning of March. I finally want to say Christy and Debra worked on the
CHRISTINA BETHELL: Thank you, Michael. I'm
ready to go. Welcome for those of you who have joined today's webcast. The goals for our presentation over the next hour
are first to give background and goals for the Data Resource Center on child
and adolescent health and overview the datasets in there briefly and also
introduce the new survey that Michael mentioned, the national survey on
children's health. We'll outline the steps that are required to use the
So to begin, the
next slide. As I mentioned we'll be using examples and illustrations
from the website up and running on the survey of children with special
healthcare needs. What is the
What are the goals of the
We're -- Michael said we're the child and
adolescent health measurement staff that work with a variety of consultants in
the I.T. area to support the back end of this, as well as family voices staff
and other family groups and we have a wonderful national technical advisory
group that we'll be assembly and have been assembling over time to make sure
we're on point method methodology wise. The
First of all you can access the data from the national survey on children's health and the national survey on children with special healthcare needs. This data is already worked up. In other words, data files that need to be merged have been merged, the data variables have been constructed and the data has been cleaned and it is in that point and click easy access format. You can search the dataset on the topics there and indicators as well as compare across subgroups, populations according to age or gender or program, enrollment to the extent the data is available on the dataset as well as geographically and by many subgroups of children according to their health, health status and health use. The other thing you can do is learn to use data for effectively. We'll be having examples on the website as well as through technical resources to support optimal use of the data in terms of helping lay people or people who aren't used to using data quite as much on simple templates to tell the story the data is telling so you can engage audiences in that process.
Discover how other states are using the data. We'll be collecting innovative examples from as many places as we can as the data starts to be used. Also to get expert help. This project was developed ultimately through a pilot study which we can talk more about for those who want to know about the development and where we came -- how we got to the place we are in terms of the look and the features that are on the website. But I can tell you just a couple of things we learned through the pilot. First of all, is that for the data to be used it does need to be made easily accessible.
While states have technical resources often to use data those aren't always accessible or affordable or timely or accessible in a time -- timely way. You need it quickly to attend a meeting. They use specific knowledge about the survey. What is it, what are the topics? If you've ever seen the survey formats they can be lengthy. One of our goals is to make sure that people can in a point and click way find out quickly what is in there. How was the question constructed so it's more simple for people to learn about and know what is in the survey and how the data was collected. That frames how you'll search the data and how you'll present your findings. Again, people need technical help. Opportunities to learn. Opportunities to partner with others. And concrete examples. So what the last piece I want to just do is an overview.
There is at least five ways we've already
Secondly, is building partnerships. There
are many -- in order to achieve change we need to partner. Often with other
state agencies, certainly with healthcare providers and consumers and bringing
people together around a common understanding of needs and the data but that
sports that it can be a very powerful and effective way to engage people and
focus people's attention on creating change. Additional wasted indicating
policymakers, supporting advocacy so that it's more evidence-based and finally
grant writing. We've had a number of examples of people using the
We'll quickly review the two datasets in
DEBRA READ: Good morning. Pleased to be
here. I suppose it's not morning everywhere but morning in
The good news is, is that the survey is going to be repeated in 2005. And the plans are to make that data available as well on the same easy access interactive format as the data query for the earlier survey. We're looking forward to that. It's sponsored by the Maternal and Child Health Bureau and working in great partnership with the National Center for Health Statistics because they oversee the administration of this survey, as well as the national survey of children's health. We have a lot of collaboration and partnership with them. We always like to mention the word slate because many, many times people call this particular survey slates. In a minute I'll show you an example about why we'll have to broaden and be more specifics. Slates is the mechanism used to find the households and the children that are asked this survey. And it's actual appropriate name is the national survey of children with special healthcare needs.
The new upcoming survey the national survey of children's health uses the slates mechanism. We always like to touch on the fact that it means more than one thing. Many of you are well aware that the purpose of the national survey of children with special healthcare needs was to, for the first time, generate prevalence estimates for this population as defined by the Maternal and Child Health Bureau. It gave us some baseline measures of different attributes of the health system and the systems that serve these populations. And some of this information is very applicable to the state Title V grant assessments that many of you are now involved in doing and gives us some information about insurance data for all children and of course it's a great resource for policymakers, researchers, advocates and many other audiences.
Just briefly, the national survey of children with special healthcare needs, at the actually contacted 200,000 household with children nationally and screened all the children living in those household. 400,000 kids were screened between the ages of 0 and 17. Information about the household level, income, number of adults available on the website that you can query for your state. There is information about those almost 400,000 children that were screened nationally. Both the children that did meet the special healthcare needs screen and the children that did not. In most states about 950 children were screened positively for special healthcare needs and out of that group, or the almost 50,000 nationally, or about 950 per state, 750 were randomly selected for the much longer children with special healthcare needs interview. Those are the data that many of you are familiar with and will probably have the most applicability for your Title V Block Grant title assessment activities. Information about each of these populations, the households, all the children that were screened, and then the much more in depth information about the special healthcare needs long interview are all available on that site.
The in depth interview collected a lot of
information. It looked at the health and function status of children with
special healthcare needs. Insurance status, their experience
with access to healthcare. Impact on the family.
It's important to note that all the responses in this survey are weighted to
represent the underlying population of children 0 to 17 in each of the states. That's
why it's called prevalent survey. You can look at any of the data and look and
think about it in terms of the population in your state. Now, moving on to the
new survey which we're very excited about, that will be as we said available
toward the end of April, national survey on children's health as Michael
mentioned, almost 100,000 completed interviews. The goal was 2,000 per state. In
this slide you can see that there was a minimum in
However, the screening questions that I identified children with special healthcare needs were asked in the survey of child health so all the topics that you see listed here in this slide, access to care, children's -- the kind of conditions they have, issues about their family and neighborhood, etc., etc., will be able to be examined at the state and national level for children who do and don't have special healthcare needs. The first time the information is going to be available. It's very exciting. In the national survey of child health it looks at three levels of the holistic view of a child and these are asked about a target child that is randomly selected in each of the households contacted. It looks at the child level characteristics. Family level characteristics and then it looks at the influence of the neighborhood and community in which these children live. It looks at a number of different outcomes for each of those characteristics. It will give us a comprehensive, detailed snapshot of an individual child, the family they live in and also the neighborhood that encompasses them.
There is going to be a number of different indicators on child health and well-being that will be able to be extrapolated from this data around family strengths, relationships, etc., etc. We're working now to finalize the indicators, very exciting work. Now, when this survey is available at the end of April and with the national survey of children with special healthcare needs that you can go right online and look at right now, there is kind of a process that we've identified through the pilot study and through a lot of input from users such as yourselves and others. And there are really three steps if you'll look at survey data. The first one is you go and search the data and get some results. Understand and interpret your findings and put them together in a way to communicate and tell your story.
Really basic steps and our goal in this Data Resource Center is to provide assistance and examples and templates for each step to assist users and meet them where they are so we can help them go to the next step in being good consumers and users of this data. You can see on the next slide one of the very first things in using survey data people need to understand what is asked in the survey, who do they ask it about so when you get results, you can be a good interpreter of what those results may or may not mean. So, for example, there is information on the data resource website right now on the national survey for children with special healthcare needs portal about how the data was collected and information that summarizes the 130 pages of the survey. What were the topics asked and what were with specific questions that people were asked. That does make a difference in how you interpret the responses. Once you've got a good background in who got asked the questions and what did they get asked, then you're ready to really start to look at the data results.
Now, one of the ways to start is almost
like it's a chart book level. There is an option on the national survey for
children with special healthcare needs portal at the
Select the geographic area you're interested in. You'll move to the next screen where you're asked to select a topic from the survey. And once you've selected a topic there are a number of different questions or indicators within that topic area that you can select and look at the results. That gives you kind of a chart book layer of information. Now, the two unique things that you'll be able to do or the two further steps when you use the data query tool, do the optional step to the right of the slide that says you can compare what you found for your state against other states or HRSA regions or the nation. That's a unique feature that you can look at side by side and see how your state is different. Even more so you can move on to step three and look at that in our example adequacy of health insurance and look how that might be the same or different for different subgroups of children by age, by race, ethnicity, household income, whether they've been insured for the entire year. Current insurance status, the type of special healthcare need or severity of it. It gives you a lot more information about where the needs are the greatest and whether they're the same and vary for that one particular indicator you may be looking at. Christy will give you some examples of what that might be of when you open up the numbers and how it might be useful.
CHRISTINA BETHELL: The majority of the
slides are the screen shots from the website looking at the national survey on
children with special healthcare needs. In your mind imagine the
an -- analogy for the national survey on children's health. If you can
go to slide 27, I'll start there. Keep in mind that all the information that's
on here is meant to be very consumer friendly. The Centers for Disease Control,
Deb went through the state profiles. You can look at your state profile or go into learning the survey or start a data query. This is what we'll go into now. If you were to click on start a data query and go to the next slide, number 28, we'll start with an example. This is an example that is looking at one of the MCHB core outcomes. It's the core outcome on families or partner in care. We'll be looking at this by insurance status and also comparing the state to the nation. In a couple of clicks what you can do here on slides 28 if you see the numbers.
We're looking at
Then the next screen what we're comparing at the bottom of that slide is by insurance status. So you click insurance status. That's the group you want to compare this outcome for. Those who are and who are not insured. You could have selected other things. For example, race, ethnicity or the special type of healthcare need. The next screen, 32, you get the results. Each time you do a query, it gives you the results and gives you the option to continue to layer in as you might like. So you can see here that if you're insured you're twice as likely to have this outcome be met. That's information that could be very useful for a number of reasons, obviously. And in terms of supporting insurance coverage, inadequate insurance coverage. The last step here is how do we compare to the nation and then you go down and you can select any state or region. And compare to any of those. And then you again get the results on screen 33. So here you can see that in particular this state is, in fact, more likely than the nation to have people who are insured be experiencing family partnership and decision making and satisfaction. That's actually statistically significant and a more in-depth workshop but we have very quick guides that I think some of them were provided for you for downloading to quickly allow you to look at this screen and very quickly assess whether or not it's a statistically significant difference.
The graphs are organized to at a glance
help you answer that question. The next example that I'm going to be going to
is on screen number 34 and this is example number 2 and the example is school
absences by type of special healthcare need. So are we looking at Kathy? All right. School absences by type of special healthcare
The first screen we're going into a topical
We'll be doing some similar sub group
opportunities for the national survey on children's health according to how
children meet a number of screening criteria included in that survey, including
for the younger children being at risk for developmental delays, as well as
screening for special healthcare needs and there is a condition list that's
included in there. We'll be working on other subgroups in addition as an
analogy. There is a lot of data on there. What we want to do now is compare to
I'm going to do one more example just to get your thoughts going. This example is looking at one of the state profile indicators for the country, adequacy of insurance, which is a very, very valuable indicator. So we first pick the state profile indicators at the very bottom of the topic list in slide number 39. And then you pick among any of the indicators. So for the national survey on children's health, once those indicators are defined they'll be in here and you pick on whichever one you want. In this case we're picking children and youth with special healthcare needs whose current insurance is not adequate and you can then get the results. Here you can see that 33.8% of parents are reporting that the insurance that their child has is not adequate to meet their needs. You might want to compare that for subgroups. In particular there is a lot of concern and interest in disparities. So race and ethnicity comparisons are valuable to many states.
The next slide, what we do is go down to the sub group, opportunities, and we're picking
in this case race or ethnicity. The next slide gives you the results to that. We're
showing mostly the graphical results. There are tables as well. In each case
the tables and the graphs can be printed in a nice, pretty, printed format so
you can hand them out. They can also be downloaded and inserted into reports or
Power Point slides in a very simple way. The quick guides on the website show
you how you can very quickly just print or save them to your computer and
upload them into a word document for Block Grants if that is
something that is useful to you or Power Point presentations or other for
matter you would like to use. We found that people vary in terms of whether
they like graphs or tables. We put both in for each data result. At the very
end of this number 43, this particular query you can see we're comparing to --
across the various groups and that we picked earlier -- I'm sorry, I got off on
the downloading. We compared to
The Data Resource Center and online and email and telephone technical assistance is not directed toward researchers, we do understand that there are analyses that go beyond what is possible here that could be very useful. Some analyses that combine in multi-variant models. What we'll make available for that is downloadable datasets that have the data already -- the variables constructed, the data cleaned so that you can just download it and you don't have to do all the prior steps to get the dataset to a point where you can then analyze it. And it will be on a standardized way. When you do it in your state you're comparing the same construction of the indicators across the states and to the nation. One of the things we've experienced a lot of in our technical assistance work is different states calling regarding what they're finding on the indicators and there is quite a bit of variation around how it is coded in states when they use it themselves and easy to make a mistake and even have a slight difference.
So if we want to do apples and apples to comparisons across states we want to be able to provide these datasets so you can make sure it's done the same way and hopefully that will be valuable. If you want to go beyond what you can do here you can download the datasets and have them available on the survey on children's health insurance we can. I'll turn it over to Deb to talk to you about a few more features and then we'll take questions.
DEBRA READ: Hello, this is the part I get excited about because it was fun to hear what people need and work with our I.T. staff to make it happen. It's one thing to get the results on a website screen, another thing about how can you take them and use them in your report and use them in presentations, etc., etc. So you have a couple options. You can see up at the arrow at the top of this screen you see two options, print version and add to briefcase. And one of the materials that you were sent for this is a quick guide to how the steps to doing either save it to your hard drive of your computer or how to download it into a briefcase. There is a backup here. You don't have to remember everything we say. It's just so you know what is possible.
When you click on the print version you get a screen that you can actually then use the save as option to save it to your hard drive on your computer. Sometimes that can be pretty tedious. You're doing a lot of different analysis and looking at a lot of results. The other option we offer is adding it to your briefcase. The first time you click on the briefcase icon you have to register. Ever after that it will know you and you'll be able to click on your personal briefcase over there on the left-hand side and when you click on that briefcase icon, you will see a list of all the data results that you saved in that briefcase. And this is really a nice feature because sometimes you're going fast and you don't want to print every time but you do want to be able to go back and review what you've done and then as you see, you can view, select one to view, you can rename something or actually delete and get rid of it and you have the option then what you're going to print out and save to your hard drive. This is an exciting thing and people have been using it and requested it.
The quick guide walks you step by step
through how you would use it. Next, as we mentioned earlier, access to the data
is a big goal of this website but we also know that to be effective users of
data, particularly in interpreting it and then putting it together to tell
others, there are a lot of resources and support that people have asked for. So
on this screen you can see on the home page for children with special
healthcare needs at the
There will be a lot of similarities because
there will be a lot of crossover and information that people will need. We'll
give you a little taste of some of the things that are behind each of these
boxes. Each of these boxes represent a resource area. You
would click on a box and then you'll take you to some other kinds of resources.
For example, if you clicked on national and state initiatives, it will take you
to the area of the website that has descriptions and links if you click on the
titles to all the national centers that are funded around the national goals
and outcomes for children with special healthcare needs. The
We've put together as many as we know about right now both examples and presentations that have talked about ways that states are using the data from the national survey on children with special healthcare needs as well as other kinds of sources to look at how to measure the progress on those six national goals for children with special healthcare needs. And these are examples and resources and presentations and including some research papers, etc., about some of the things that states are doing. But I really want to emphasize that -- we talked about resources, that you all out there in the states on the ground working to make things happen and assessing the needs in your state and implementing programs to meet those needs, you are our best resource. We need input from you and we're developing a template that we can gather information back about what are you doing?
What is the work in your state in using these data as it's available, the national survey on children's health? It's only through each other sharing ideas that we'll be able to be effective creators of good outcomes for families and children. You are our resource. Not only that, as you can see we have an area of this website where we want suggestions. How do we make it better for you? You're the audience, our users and there is an area on every page you can select, click, make a suggestion, you get this screen, it comes right to us and we have a pretty good track record of getting back to people within 48 hours. So please let us hear from you as you comment and have any suggestions. We take criticism well. We want to know how to do it better. Let us here from you.
CHRISTINA BETHELL: I'm going to say a few more things and then take some questions. We actually get back sooner than 48 hours usually.
DEBRA READ: No longer than.
CHRISTINA BETHELL: No longer than. Usually a lot quicker.
DEBRA READ: Usually 24 hours.
CHRISTINA BETHELL: Want to say a couple of things about the
resources. Like all projects, we're operating on a work plan and timeline and
there are a number of resources that still need to be uploaded and we're
getting to a place where we can upload them more quickly ourselves so we aren't
so dependent on our I.T. staff which we only engage to a certain extent. When
you see resources and there is not something that you have found that you would
like, please email us because we have a lot more examples and resources that
are being uploaded and will be integrated over the next couple of months. Don't
hesitate to do that and make a suggestion. For any other variables or things
you would like to see that you don't see right now in the
The final thing is getting help. This screen was meant to be a screen shot of our ask for help web opportunity but you can ask for help and we are even quicker in that and we've done a lot of telephone consultation. We've done specific data runs if you need to have some data runs done that go into more depth and it is something that we can often do very quickly and are happy to do and send you the printout. That's an opportunity not only to find out, get help on the website but also if you need some additional analyses and it is something that we know we could do it in a couple of minutes which is often the case we can get that to you.
The final thing is we'll be doing a workshop at AMCHP, a shortened version. Not as in depth as we like but we do workshops around the country in different places if you're interested in knowing where we'll be and participate that would be great. We have an in-depth two-hour workshop that takes you through how to speak the findings and put them in different formats and understand the data output more. We have a number of materials we could send you. We have a workshop binder we can send people that is a self-guide on walking through and learning about the data and so on and so forth. Wanted to let you know that's there. Now we can take questions.
CHRIS DEGRAW: Great, thank you, Christy and Debra. Our first question is as follows. There are questions on the survey instrument that did not show up on the interactive website. Mainly questions about insurance such as private or Medicaid, etc. Are those questions dropped from the website because of questions on their validity?
CHRISTINA BETHELL: We have a prioritization on the variable
construction and some of them have had issues with regard to the validity. The
public -- what we'll be able to do is do a public/private
cut and put up additional variables. They'll be uploaded shortly. Rural versus urban. What we have to do is work for the
CHRIS DEGRAW: Thanks. We encourage you to ask questions of
our speakers. Simply type your question in the white message window on the
right of the interface, select questions for the speaker on the dropdown menu
and hit send. We have a few more questions at this point. One is what kinds of
statistical analyses will we be able to do using the
CHRISTINA BETHELL: OK. The first thing you'll be able to do is do test of statistical difference across any of the sub group analyses. We're using a .05 level of significance. The results are provided right there on the screen. In addition, there are a couple of other things that we link you to. If you'd like to select different levels of significance we have a web resource where you can just type in the numbers from the tables and change your level of significance and go forward with a rule of thumb. But really what we're probably going to be going toward in the next phase and definitely is doing odds ratio lookup tables so you can look them up that have been adjusted for common variables. If you want to go beyond analysis up to a three-way cross tab and look at statistical differences across groups you need to download the datasets available on the website and do it yourself. It's a much easier task once you have the variables constructed.
CHRIS DEGRAW: Our next question, the data on achieving outcomes on medical home, how are they arrived at? Did someone other than the respondent assign achievement scores?
CHRISTINA BETHELL: All of the data in the website now for both the national survey on children with special healthcare needs and will be available on the national survey on children's health is reported by the parent. There is no other data sources integrated in there. The variables and how they're constructed is made transparent on the website when you click over an indicator you can get information about how it's constructed. And if it's a derived variable, right next to the measure or indicator is the word derived in parentheses so you can immediately see all variables that are composites or derived from multiple items. Medical Home is a composite. How it's measureded is available on the website right now.
If you don't get your question answered, send us an email.
CHRIS DEGRAW: Next question, can you tell what type of insurance the respondents have, for example, public, Medicaid versus private insurance from the data?
CHRISTINA BETHELL: Yes. That variable is being uploaded right now and there were some issues that we were working through with our technical advisory committee which delayed its uploading but we're done with that and it will be up as soon as possible. If you need it now, please email us and we'll get you the data for your state right now.
CHRIS DEGRAW: Another question. Will any data from the national survey of children's health be released before the end of the April date? Before the end of April date?
CHRISTINA BETHELL: There is a sample dataset now that is being used to see how the survey is performing and also to do the sample indicators that will be finally approved by the bureau but there won't be any publicly released data. We can't actually do the final analysis on the indicators to make it available for the website until the beginning of March. We gave ourselves an April 30 deadline so we had a month-to-month and a half to construct all the variables from the final dataset and get it up on the web. We're organizing it so we can pour it in, we're hoping. But before then, no, there is no public availability of the data or any of the results.
CHRIS DEGRAW: Just double-checking the speaker writes, I think you said that you would be able to compare children with and without special health needs at a state level, not just at a national level. The sample sizes for states for children with special needs will be large enough for those within state comparisons?
CHRISTINA BETHELL: In some states -- it's about what indicator you pick. If you pick an indicator that is already subset to a sub group of children with special healthcare needs the numbers will get small. It depends on the indicator. You'll be able to do it. The question is, will you be able to detect meaningful differences from a statistical point of view. The answer to that will be yes in some cases and the answer will be no in some cases. But the data will be there. One of the things we do in the workshop and quick guides is give you ideas for how to use the data even when the statistical significance is not there. There is a lot of ways to show the range of what was found and have it be meaningful to audiences even when you can't really do a statistical analysis. Translating the confidence intervals into actual numbers of children and always presenting that regardless of whether or not you're seeing a statistical difference.
DEBRA READ: I would like to add to Christie's comment. One of the materials we sent out supporting this presentation was an example from a recent workshop we did in Washington State showing how information from the Data Resource Center on children with special healthcare needs was taken and interpreted and made into a communication piece about families' experiences around having to either cut back on their work hours or stop working because of the care for the children's special needs. In that example, you'll see that percentages of children have been translating to real population numbers of children or a range that represents in the population.
We have worksheets and resource materials to walk people through that process if it's something that is not familiar to people. As Christy made the point, translating percentages into numbers of children represented in the population in your state is a powerful communication tool. Even if we can only talk about a range of maybe 2,000 children, from 5,000 to 7,000 children it's still a powerful communication tool.
CHRISTINA BETHELL: That's right.
CHRIS DEGRAW: That seems to be all of the questions that we have at this time.
CHRISTINA BETHELL: OK, great.
CHRIS DEGRAW: Like to thank our speakers
for an excellent presentation and I'm sure you'll be getting more questions
from the state directors as time goes on. Remind everybody that they will be
giving a presentation at AMCHP on the subject as well. Want to thank all of you
for participating in our monthly mchcom.com webcast. I
would like to thank our contractor, the Center for Advancement of Distance
Education at the