AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
NORA WELLS: Thank you Cassie. Well, it’s exciting to be here and to have the opportunity to share with you some information I think will be very useful to you. In the backroom on that side, I guess it’s like a bar, there are some information sheets on this Data Resource Center that Dana and I will be talking about. So if you haven’t picked them up yet, you can pick them up at the end. Also, the slides that we are using this afternoon will be posted up on the Data Resource Center site as soon as Dana takes off for Oregon later this afternoon. So anybody who would like to get back in and see the slides will be up there. Well, I’m going to begin telling you a little bit about what the Data Resource Center is but as a start, is there anybody in the room that has been on the Data Resource Center already. Can you raise your hand if you’ve been on?
There’s a few people who’ve been on, which is great. Well, what it is, and this is a site that has been developed with the support, the funding support of the Maternal And Child Health Bureau, so that’s where we have to thank for having this resource. This is a website that delivers hands on, user friendly access to national, state, and regional data from the 2001 National Survey of Children with Special Healthcare Needs. That data is already up on the site. And as of April of this year, the information, the data from the National Survey of Children’s Health will also be up on the site. The resource allows email and technical assistance. You can ask the guru’s in the sky there when you press a button, a question about what’s up there, the data that’s up there and you can get a response. There’s an opportunity for people to, there will be opportunities for people to have exchanges on the site.
The Data Resource Center and CAHMI offer in person telephone and online workshops. So if for example, you wanted more help within your state in using the data that’s up on the Data Resource Center , I think that’s something you could talk to the CAHMI Project about. And there are also educational materials and examples of how the data has been used and links to related websites that are up on the site. For any of you who have been to www.cshcndata.org this is what you come to. It’s the home page for the Data Resource Center for child and adolescent health. Family Voices has been one of the partners that's helped to develop this site. We’ve had a team of family leaders who’ve been advisers to the development of the site and who have practiced using it. And the project is part of the Champions for Progress Project.
What are our goals at the Data Resource Center ? Well, the idea here was to take data from this National Survey for Children with Special Healthcare Needs and future national surveys and provide a centralized and user, friendly access to these findings. Some of you in your states, either yourselves or you have other colleagues within your state who use data all the time and who have technical expertise in using data, and others of us have not had that opportunity. And this is a chance to translate some of that data that has been collected in this wonderful national effort, into a usable source that anybody in the public can access, and so one of the second goals is to actually build common knowledge capacity and passion for using this data to really inform our systems, both locally and nationally. So that’s one of the wonderful things about having data that is more broadly accessible. As we mentioned a minute ago, the Child and Adolescent Health Measurement Initiative staff are the main builders of this site.
As I mentioned Family Voices staff and Family Voices advisers have been intricately involved in helping to test it out and offer suggestions on what could be helpful. And there’s an excellent Technical Advisory Committee made up of state users and families. The Data Resource Center is part, as I mentioned, of the Champions for Progress Center at Utah State University headed by Rich Roberts who will be at the AMCHIP meeting. You, many of you, some of you probably in this room have been part of the State and Family Advisory Committees that have helped develop the site. And I mentioned the most critical member of the team is the Maternal and Child Health Bureau who has funded the site. Where is it? Here’s the information on three access points to this site: www.childhealthdata.org is going to be the umbrella access, which will be built upon as new sets of data are added. www.cshcndata.org, which is on the, what color is it, it’s the salmon color, I believe.
It’s actually on all of these sheets, but that is the first site that has come online and that’s been up for how many months, Dana? Six months, perhaps, more than six months, although every month new features get added, that is the site that has the National Survey of Children with Special Healthcare Needs data that was collected by the Maternal and Child Health Bureau and the Center for Disease Controls, the National Center for Health Statistics, that’s the 2001 survey. As the 2005 survey goes out into the field and is collected, it will be put up on that site. And as I just mentioned, the National Survey for Children with Special Health will be on www.nschdata.org. But these will really just be three avenues for getting into and then you’ll be able to navigate back and forth. We asked in the development, we had a pilot project, when we started this whole idea of translating national data into a usable format and we had the opportunity to ask a number of state leaders and family leaders, what they would need in order to use data from these national surveys effectively.
And these are some of the things they said. First they needed access to the data, which was already merged and cleaned and constructed in a way and weighted the way they could apply it to, for example, assessing needs in their states. They needed, this was something we heard over and over again, specific knowledge of the survey questions that had been asked so that when they looked at data that it was summarized, they would know where it came from and they would be able to understand a little more about how they might interpret some of the information. And also, for those ways that the survey data is summarized, an indication of how those compiled ways of using the data were constructed, so a construction of indicator variables. Many people said that even if they had in a very accessible way, they’d like to be sure they could always ask a question, get some technical help and interpreting and in using data.
They’d like to have opportunities to learn from and share with others how the data was being used in various states and with various family leaders. They’d like to be able to partner with others to discuss and interpret and then think about how to act on data findings. And they’d like some concrete examples of how data was being used in states or communities or at the national level. So those are the kinds of things that we’ve tried to build into this Data Resource Center . It not only is a place where there is data that I think can be very valuable to you, it’s a place where there are other resources and there are links and there are opportunities to ask questions about and to find out where this data came from. I think one of the most compelling things about the National Survey of Children with Special Healthcare Needs and National Survey of Children’s Health from my perspective as a parent of a young adult with Cerebral Palsy is that this data is collected directly from families.
This is the voice of families telling us what they experience in the system. Now, we may look at it in some ways and say, well, that doesn’t fit exactly with our experience. Or maybe people, you know, exaggerate it a little one way or the other. Maybe they gave too much credit for the system. Maybe they’re being too harsh on our system, but still in all, it is family’s responses to a telephone survey and that’s very powerful. What can you do on the Data Resource Center ? You can access information about children, youth, and their families. You can search and compare national, state and regional survey results. It is setup in a way that you can look at the data for your state. You compare it to other states. You can see where you rank on any given question in relation to the responses from other states. You can look at it in relation to the national data. And you can look at it in relation your HRSA region. So you certainly can locate, I would say there’s a number of findings here that are already posted from the National Survey for Children with Special Healthcare Needs that could be very useful to you in your Block Grant applications.
There are ways you can gather information from this site that will help you use data more effectively. You can discover how, by looking at what other states have posted that they’re doing how other state and family leaders are using data. And you can, as I said, this is the key feature, I love this feature, you can get help. You can actually ask a question as you go through the site and you find certain data points, or you have a question about some data point, you can actually email a question and you’ll get a response within 24 hours. We, with family leaders, we’ve used this data resource site in a number of presentations with family leaders and they are always interested in what they might want to do with data. And I know there’s some family leaders in the audience. I know there are lots of you that are state leaders.
What family leaders often say to us is they need data in order to educate policy makers. Some of you are policy makers. We, as family leaders, are more helpers to policy makers. We like to identify what our, we think are some of the key policy issues in given states and what programs what need what kinds of information to help them understand better how families experience things, what data could help us all learn about child health needs. If we think about using data in advocacy approaches, there are always key pressure points in either program budgets or program priorities that are coming up and data can really help us. Often we know about what’s happening in terms of the, of the budget key point or crunch and then we need to be able to educate people, back up information and we can use data for that.
We need to think about how can we use data most effectively to present a given point. And the Data Resource Center helps by sharing fact sheets or testimony or the media along with family stories. And it’s also very helpful to both states and other leaders who are trying to write grant proposals and need to be able to describe the population who they are trying to help. Specifically, if you’re thinking about this data that’s up there, and how many of you are familiar with the National Survey for Children with Special Healthcare Needs in terms of the questions asked? Do you feel you know what questions were asked? Because I know that’s something that family leaders ask all the time. And the wonderful about this site is, it not only has a quick summary, and Dana will show you a little version of it, a quick summary to the guide to the questions that were asked, but on every data point there you can actually click on an area of the actual survey tool that was used and see the full language of the question asked. But the National Survey for Children with Special Healthcare Needs was originally designed I believe to help us identify prevalence for this population that we’ve all been working with and talking about, but we have never had nationally representative prevalence data.
So how many in your state have special healthcare needs? And we don’t all agree with some of the figures that have come out. Sometime we feel like they’re not completely capturing everything and there are ways you can ask a Data Resource Center staff and others about why this particular number is this way in your state. The other thing I always like to say when look at the National Survey for Children with Special Healthcare Needs is we need to be thinking about the data as it relates to what we know from other sources as well. And how does it help us understand and what questions does it raise, because in some of those questions that it raises, we know what we want to do, what other things we want to do in the state to try to help us find out how we’re, you know, serving people and it helps,
I think it helps both raise important questions and clear up our things. And in terms of building partnerships, this kind of data can be a wonderful opportunity for public programs such as Title V programs and health plans and hospitals and providers and community groups and faith based organizations to all have access to some information that can help people understand. And this Data Resource Center is any easy way that any of those groups could go on to a website and see some information and it will raise questions in their minds based on what they know from the families they serve. So our biggest goal I think is to think about how we can all share data effectively and work together to improve systems, which of course is all of our goals. And now Dana is going to tell us a little about the national survey.