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Session 1: Data Books for Monitoring the Safety Nets (continued)

Cindy DiBiasi: Sort of like the "Ask Jeeves" of data. (Laughter.)

Robin Weinick: Very much so.

Cindy DiBiasi: Hopefully our listeners are going to take advantage of all these new resources, Robin. It certainly sounds as though you have thought of everything when it comes to being user friendly. This is not data for data's sake, that is for sure.

In a moment we are going to open up the discussion for questions from our listening audience. There are two ways you can send in your questions. We encourage you to ask your question by phone. If you are already listening by phone, all you have to do is press "*1" to indicate that you have a question. If you are listening through your computer and want to call in with questions, the number to dial is 1-888-469-5316 and just press "*1".

When you are asking your questions on the air, please do not use the speakerphone to ask your question and if you are listening to the audio through your computer, please turn down your computer volume after speaking with the operator. There is a significant time delay between the Web and telephone audio.

If you want to send a question via the Internet, simply click on the button marked "Q&A" and on the event window on your computer screen, type in your question and then click the "Send" button. One important thing, if you prefer not to use your name when you communicate with us, that is fine. But we would like to know what state you are from and the name of your department or organization, so please provide those details regardless of the way in which you transmit your question.

As you are formulating your questions or queuing up on the phone lines, I would like to say a few words about our sponsors. The mission of AHRQ is to support and conduct health services research designed to improve the outcomes and quality of healthcare, reduces costs, address patient safety and medical errors and broaden access to effective services. AHRQ's User Liaison Program serves as a bridge between researchers and state and local policymakers. ULP not only brings research-based information to policymakers so that you are better informed, but we also take your questions back to AHRQ researchers so they are aware of priorities at the state and local level. Hundreds of state and local officials participate in ULP workshops every year. The audio conferences are being co-sponsored by the Center for Health Services Financing and Managed Care and the Department of Health Resources and Services Administration, HRSA. HRSA is the Department of Health and Human Services access agency. It assures the availability of quality healthcare to low income, uninsured, isolated, vulnerable and special needs populations. Its mission is to improve and expand access to quality healthcare for all Americans.

I would also like to recognize the special contribution of Rhoda Abrams, the director of HRSA's Center for Health Services, Financing and Managed Care. I would like to take a quick moment to thank Rhoda, the director of HRSA's center, because she has been instrumental in helping to develop and produce these safety net products.

We would appreciate any feedback you have on this Web-assisted audio conference. At the end of today's broadcast, a brief evaluation form will appear on your screen. There are easy-to-follow instructions on how to fill it out. Please be sure to take the time to complete this form. For those of you who have been listening by telephone only and not using your computer, we ask that you stay on the line. The operator will ask you to respond to the same evaluation questions using your telephone keypad. Your comments on this audio conference will provide us with a valuable tool in planning future events that better suit your needs. Also you could E-mail your comments to the AHRQ User Liaison Program at info@ahrq.gov. Now let's go to some of our questions.

On the phone with us we have Steve from Maryland. Hi Steve.

Steve Forstancer: Hi. My name is Steve Forstancer. I am with the Maryland Healthcare Commission. A question I have is if the key point for the safety net is state and federal programs, and the money has been cut in virtually every state and the federal programs, what do we do with the safety net next?

Robin Weinick: Well that is a pretty complicated question. Obviously big issues here, particularly in light of what is happening with the economy and what is happening with state and federal budgets. I would argue that there is no simple answer, but what the data books can help us do is understand the impact of those types of changes. We now have some baseline data to know where we are starting from so that as changes do occur over time, regardless of whether they are budget-related changes or policy-related changes, will understand what is happening.

Steve Forstancer: OK, thanks. I appreciate that because I think with a baseline now going forward, we will see the impact.

Cindy DiBiasi: Thank you, Steve. Also on the phone from Minnesota we have Sunny. Hello?

Stephan Gildemeister: Hello. It is actually Stephan Gildemeister from the Department of Health in Minnesota. Quick three questions for Robin. First of all, our compliments. This looks like a really interesting resource and we are going to definitely take a look at it.

Robin Weinick: Thank you.

Stephan Gildemeister: A couple of questions. I think the first question is, and maybe that is a tough one to answer, of the 118 variables that you are looking at, sort of what are the data sources and related to that, to what extent are they directly comparable across states? I would expect there are different measurement practices in each state. Lastly, what proportion of the measures are direct measures versus estimates from multi-variant analyses?

Robin Weinick: OK. I can answer all of those. I am actually not going to sit and list all of the data sources for you. I believe we are at about 15 or 16 different data sources. But what you can do is if you look in the back of Book One, the third part of the book, has a technical appendix that describes every measure, its definition and the data source that it comes from. So you will see we are using census data; we are using data from the Uniform Data Source; we are using data from the National Health Interview Survey, the current population survey. So we are in a wide variety of areas. We have really tried to work with only datasets that would be comparable across states so we have tried to use things for example that are collected nationally but where we can actually go down to a local level using those data so we know the methodology was the same across states. None of the measures in the book come from multi-variant analyses. So they are all estimates based on either survey or other data that are done directly. We have done no simulation modeling or anything like that to produce these numbers.

Stephan Gildemeister: Thanks.

Robin Weinick: Thank you.

Cindy DiBiasi: From Nevada, which is one of the 30 states included in the data book, Laurie Olson is on the line. Hello Laurie. Oh, is Nevada one of the 30 states? I am sorry.

Robin Weinick: Well, you answered correctly. (Laughs.) Nevada is one of the 30 states. Again, the data access tool, because I just found out about Nevada, very quickly lets you access some of the information so I can, for example, tell you right now that in a Las Vegas metropolitan area, the expenditures per person below 200% of poverty from Medicaid are $1,443 per person. So again, just a way to access those data and all I knew right now was you want some information for Nevada.

Cindy DiBiasi: OK. A question from Deborah Kleckly from the Jefferson County Department of Health in Alabama. "Do you have any suggestions on how communities, which are not included in the book, can best use the information? You had spoken earlier about proxy methodology." Bob, do you want to take that?

Robert Seifert: I can take a shot at it. I would say that as Robin explained, the Profile Two on the Web and also the book itself allows you to find communities that are similar to yours in the book and understand what the data is of those communities. It would depend on what you were trying to accomplish with the data to determine whether that was of any use to you or not. I would say though that the use of the data as a baseline is probably universal, even if your state or community isn't included. You would be able to point to these data over time as the data are updated and trends become apparent to say there are communities like ours even though ours isn't in there where the safety net is improving or deteriorating and we should be concerned about that.

Robin Weinick: I would also like to add that we will be doing one update of the dataset. I don't know if we will be going beyond that but I know we have committed to one update of the dataset. We are happy to include additional state's data as they become available. For example, one of the core things that we need for this dataset is to have hospital discharge data so that is the primary reason why states that are not included are not included. So as additional states become available, we will be adding them in. For example, Texas was not included in this round of data, however, they have since joined the Agency's Healthcare Cost and Utilization Project, which collects hospital discharge data so we will be including Texas in the update of the dataset.

Cindy DiBiasi: Is that the best way for a state to get in, to get involved in that project?

Robin Weinick: On an ongoing basis, of course, we work with all the states towards increasing participation in that project. We do have a few states that have provided us with hospital discharge data directly separate from that project and we have included those as well.

Cindy DiBiasi: Tony from Minnesota's Primary Care Association want to know, "Where are the city-level data available on the Website?"

Robin Weinick: You have got several ways to access this. The city data are always shown under the relevant metropolitan area. So for example, for the Washington, DC metropolitan area it will show all of the surrounding counties, plus Washington, DC proper. Or you may be more interested, for example, in Minneapolis. But the way you find that is either to look at the books themselves. Again, you would go to Minnesota and you would look under Minneapolis metropolitan area to find the city of Minneapolis or the City of St. Paul in particular.

Or you can again use the Safety Net Profile Tools. If you look at metropolitan areas and you choose, one of the things it will ask you is if you would like to see all the components of the metropolitan area. You choose that, you choose your measures and you will see what you are looking for.

Cindy DiBiasi: Question from Shari Isert from Denver Health. This is a question that I think possibly could take up the rest of the Web cast. A really comprehensive and good question. "What are you expecting, how are you expecting this information to be used by researchers and policymakers? What questions are you attempting to answer and what changes do you foresee occurring?"

Robin Weinick: Well, I can tell you that these data are ripe for use right now in a number of ways. For analyses in and of themselves independently or by merging them on to other data sets that people may have that they are interested in. We haven't actually started doing a lot of digging around in the data beyond what I have presented to you here today. Accumulating the data and putting it in a usable format so people could understand the basics of what is going on in their local area was our big first step. So we have gotten to that big first step and what I would love to hear certainly from any members of our audience at any time, is their feedback on what kinds of questions it would be helpful for us to answer for them? What additional information can we provide? We have a number of ways to do that, but probably be easiest is to E-mail info@ahrq.gov. That is info@ahrq.gov.

Cindy DiBiasi: Bob, you are on the frontlines of this. What do you foresee?

Robert Seifert: If I could just first of all add to what Robin said. If people would also, in addition to asking AHRQ, giving AHRQ the questions that they would like to see them answer, let Robin and AHRQ know what you have done with it yourselves. Local, local, local, local. How have you in your communities made use of the data and maybe there is some way of gathering that information and making it available to others so that they may be able to replicate some of these analyses.

Robin Weinick: That is actually very important to us to understand how you are using the data. We need to understand in what direction we should be headed in in the future. If you order a copy of the books, there is a business reply card that asks you a couple of basic questions about how are you using the information. Or you can E-mail us from again, the same Website that we shared with you earlier.

Cindy DiBiasi: We have a couple of people on the phone. Maybe they will share with us their insights on this. Sophie from New York. Is that New York? New Jersey. I couldn't read that second letter. Go ahead.

Sophie: I am from the Board of Pharmacy in New Jersey.

Cindy DiBiasi: Sophie, could you talk a little bit louder, please?

Sophie: Sure. I really would like you to repeat the original Web access code that you gave us because I didn't catch all of it and I want to make use of the data books.

Robin Weinick: Sure, absolutely. It is www.ahrq.gov/dhea/safetynet. That should be up on your screen.

Cindy DiBiasi: Did you get that, Sophie?

Sophie: I have got it all. Thank you so much.

Cindy DiBiasi: Let me ask you a question. Are you still there?

Sophie: Yes I am.

Cindy DiBiasi: How are you planning on using the data?

Sophie: Well, that is what I am trying to figure out. Our particular agency isn't really tied into the safety net to that extent, but we were interested in the project and the methodologies that you are using. We wanted to find out how you are communicating with such a large group and that is why I am monitoring this call, program.

Robin Weinick: Great, that is wonderful. We are happy to provide assistance to states or localities in using the data so if you have a question that you are trying to answer, let us know and we will see what we can do.

Sophie: OK, thank you.

Cindy DiBiasi: We have from Arizona, Howard on the phone. Hello?

Howard: Yes. Thank you very much. The question that I have is that we have been using data in trying to do a rural health assessment for the State of Arizona. One of the things that we are doing is the issue, in terms of your database, is whether or not that all the data that you are collecting are all at one point in time. In other words, they are consistent, for example, for the year 2001 for all your data or are they all mixed?

Robin Weinick: Different measures do come from different years. In general, they are from anywhere between 1999 and 2001. What we are hoping to do, the hard thing the first time is getting everything together. So the update, what we are hoping to do is move to the most recently available data year that we can for as many of the measures as we can.

Howard: OK. Thank you very much. I understand how difficult that is.

Robin Weinick: Thank you, I appreciate that. It is great when somebody knows what you are going through.

Cindy DiBiasi: Robin, is there a way to actually search for a specific timeframe?

Robin Weinick: There is not but you can certainly search for a specific measure. We actually have a whole list of the measures that is searchable on the Website and it will actually tell you what year each of the measures come from.

Cindy DiBiasi: OK. A question from Nancy Libbyfisher. She says, "It appears that data have been segmented by age. Have they also been segmented by gender?"

Robin Weinick: Only some of the data are segmented by age, particularly information on uninsured poverty levels and on population size. They have not been done by gender.

Cindy DiBiasi: Is that something that you expect to happen in the future?

Robin Weinick: If people have a real need for it and we hear from enough people we could certainly include that as well.

Cindy DiBiasi: Richard Senlenson, the map showing data collection areas indicated data from Clark County and Esmeralda County. What about the rest of the State of Nevada?

Robin Weinick: That is actually just an artifact of what you are seeing on the screen. If we are in a state, we are in the entire state and we have data for every county. So that is just an artifact of how it is appearing.

Cindy DiBiasi: OK. So get the data and you will find out if you wanted to know about another one of the counties.

If the data books don't have information on the state or area, does it meant that the state chose not to participate?

Robin Weinick: It does not. We did not go to the states and ask them in particular to provide us unique data to participate. We are using data that they have already made publicly available to do this. What it really means is the data weren't there rather than the state didn't, had not chosen to participate. There is really no issue of that.

However, if any state that is not included would like to work with us to provide us with more data, we would be happy to talk to them.

Cindy DiBiasi: OK. Tina Edward from the Oregon Health Policy and Research wants to know, "How often do you plan on publishing and updating these volumes?"

Robin Weinick: Right now we have funding for one update of the data set. It won't be the books; it will just be the electronic data set as well as the profile tool being updated in early 2004. Unfortunately, we don't have funding beyond that and so if you all think, in the audience, that this is a useful product and you let me know that, obviously that is something that we can consider because what we are primarily interested in is meeting the needs of our constituents in our audience. So the more you can let me know about what you need in the future, the better we can meet those needs.

Cindy DiBiasi: Bob, let's talk a little bit creatively here. What do you see as some of the best uses, perhaps the biggest needs out there? How can this data really be used effectively?

Robert Seifert: I think I touched on it earlier, when I talked about the date providing a common ground for local discussions. I have been involved with local groups in communities that are working on access issues. So much time gets used and eaten up, really, arguing about whose data are right, what the real story is. It is a "they said, we said" kind of situation that really detracts from the substance of policy discussions that are going on. The fact that now here is a source that to the extent that it provides the information that people can base discussions on and agree on because these are from reputable, national data sources. It saves a lot of time. It saves a lot of potential acrimony in some of the conversations that go on. I think it really does facilitate making a lot more progress in improving the health system at local levels. So I see it as useful to all parties who are interested in improving the safety net and the healthcare system in general, in communities. That is not just policymakers and healthcare providers, but it is consumers and advocates as well. Providers of ancillary social services, really there is a whole network of people sort of at the periphery of the areas that the data really described that can benefit from it as well because it does provide this foundation of common ground for discussion.

Cindy DiBiasi: Are there findings in the data book that you found to be particularly surprising or counterintuitive?

Robert Seifert: I think that yes. I spent a lot of time when I first got the data just kind of thumbing through it in my leisure time. One of the things that Robin talked about before, I think was very interesting. The lack of association between poverty and uninsurance across the country. It is not very intuitive to think that there is no real relationship and...

Robin Weinick: Although Bob, I would like to say that that doesn't mean there is no relationship for individual people. What it means is that a large geographic area level at a metropolitan area level that there is no relationship. You need both of those pieces of information to understand demand for the safety net.

Robert Seifert: So when you are in a city where, for example, you may not have the uninsured rate, as we talked about before. We don't have that below the metropolitan area. You might think, "Oh, I will just go get the poverty rate." If we have a high poverty rate, that means we probably have a high uninsured rate too. That seems not to be borne out by the data. That was surprising to me. But also the fact that there are these other proxy measures that are available, these personal distress measures that are noted in the book, gives another opportunity to go and understand what the access issues are, what the uninsured, that sort of "phantom" uninsured data might be with something with which there is a better, a stronger association.

So that is one area that I thought was very interesting.

Cindy DiBiasi: One of our listeners, Tim Burac, says, "I have looked at some of the measures hoping to find data related to homelessness. I can understand why it is difficult to get standardized data on homelessness, but is there anything on the horizon that might allow additional data about housing status to be included in the data set?

Robin Weinick: Well, I will tell you my favorite answer to these questions is if you can tell me where to find the data, we will include it. The problem is actually not that we are unwilling to. We are having to put in any measure that is relevant but finding data on homelessness at all to begin with is a particularly difficult topic but much less to get it down to the county level, which is what we need. It is virtually impossible. There may be for example, one state that has done a survey of its counties to try to estimate homelessness, but we know of no data source that goes across all the states that were in that could give us that information down to the county level. So if you can share information with me on where to find the data, we will include it.

Cindy DiBiasi: One of the things in your last comment, Bob, that seems to lead to the question of, we have to be careful. Again, as you said, this is data and we could draw a lot of conclusions from this data. Once people start to analyze these numbers and try to make assumptions from these numbers, we are just as likely to be going off in the wrong direction as the right direction if we are not careful. So there is more to it than just the numbers. It is how we are analyzing these numbers.

Robin Weinick: Absolutely. And as Bob said, the data can only give you part of the story. If you find out that a particular measure looks what you think is high for your geographic area, the first thing I would suggest doing is looking at some neighboring areas and looking at some other similar areas to see whether you are really high or low compared to then. But then also looking around your community to start to understand the "why's". Data can tell you a lot about what is happening, but it can't tell you a lot about why it is happening. So understanding for example, that three bus lines just shut down that used to run from one neighborhood to a particular hospital so people could get their care in the outpatient clinic. You are not going to find that in our data set or most other data sets. But if you know that is what his happening in your community, it is going to tell you a lot about what is going on with the safety nets.

Cindy DiBiasi: A question from the Department of Health in Massachusetts. Nancy Wilbur wants to know, "Is it possible to download SAS files and import them into our system, recode or do what we would need to do on our end, and use your data set in combination with ours. For example, loading in local Medicaid per-person costs, that they don't exist in the data set (unclear).

Robin Weinick: Absolutely. Nancy, I can tell that you, like Bob, are a big data enthusiast. Yes, we have the data available in SPFS and stata format, as well as in ASCII formats. You can download those off the Website. We do include FIPS codes, Federal Information Processing Standards, which are the standard way to identify a geographic area so that you should be easily able to merge our data on to any other data set that you have that also has FIPS codes. Again, going back to our Web site, www.ahrq.gov/data/safetynet and I will tell you something, Nancy. Bob just wrote me a little note that says, "That is so cool." (Laughter.)

Cindy DiBiasi: We are glad you like it. From Lincoln Lancaster County Health Department, "How can a state become a part of the dataset? How can Nebraska contribute?" By the end of this call, we are going to have all 50 states. (Laughter.)

Robin Weinick: That is right. I had said the best way to do that is you are going to have to get in touch with me personally and we will talk to you about getting involved with all of our different data collection efforts. Again, you can just send an E-mail to info@ahrq.gov. I am Robin Weinick, again, and I will be the person answering all those E-mails. Given the number of people on this phone call, I may have a large number of them to respond to next week so be a little bit patient. I would be more than happy to work with you to get your data included.

Cindy DiBiasi: How current is the information and is the data set based on lowest common denominator? Are we talking about comparing 1999 data in Arkansas, for example, to 2002 data in Missouri?

Robin Weinick: No. Actually we are not. We are better than that. So what it is if a measure is in the data for 1999, it is for 1999 for every state and every county that we include. A different measure, however, a different variable or data observation, will actually be for a different year. So for example, if we are talking about the percent of uninsured and we are talking about data from 1999 through 2001, it is a combined estimate for those years. It is for those years for every geographic area that we are in.

Cindy DiBiasi: A question from Thomas Solina. "Is this data also available on a national level so we can compare local data to the national average?"

Robin Weinick: Some of these data are. We do not actually include a national average because we only include 30 states, we didn't want to be misleading about that. For some of these data, however, the readily published information is available at the national level. There are a number of data sets, for example, that provide information about the percent of the population or percent of the low-income population that is uninsured. You can go to the Census Website to get information on the percent of the population nationally below poverty. The national statistics are actually the easy ones to come by. It is the state and local and particularly getting down to the county levels that are harder to find.

Cindy DiBiasi: How long were you working on this, Robin?

Robin Weinick: It has been more than two years.

Cindy DiBiasi: Did you find geographically, the states that are not involved in this, was there any consistencies among those states?

Robin Weinick: Not really. Mostly it just has to do with sort of what kind of data and information that they have available, particularly the availability of hospital discharge data, which different states have felt a different extent of need for. Some states have very well-developed systems, and some states have systems that may meet their needs but may mot give us the information we would need to include them.

Cindy DiBiasi: You mentioned earlier that the data book should not be expected to capture all of the important features and demand structure, extra outcome community safety net. What are some of the other issues to examine and how would you go about doing that?

Robert Seifert: I think the issue of access to healthcare, access to the safety net is complicated and often as much psychological as actual. There are issues in communities that I am familiar with. Access versus perceived access. How do people feel about whether or not they are welcome at healthcare providers in the community? Cultural barriers to access. Language barriers to access. Financial barriers to access are something that we have come across quite frequently recently, the issue of medical debt and whether people feel comfortable going back to facilities that they owe money to. We don't really have very comprehensive data on a lot of those things, so you need to go to the community and you need to ask the people who are using the services and the people who are providing the services. What are your policies on paper and then how are they, the people who are responsible for implementing those policies, how do you do that?

Cindy DiBiasi: For example, let's be specific. When you say, "go to the community", who are you talking about? At a community level, who would you go to?

Robert Seifert: I would go to people who use services at a particular facility. I might work with a local community organization to survey community members. Come up with a short survey to ask them about particular access issues that people in the community might understand to be an issue but don't have a lot of hard data about. I think that there is a great opportunity here to use the data in the data book to then jump off at your own community level and make new data, collect data, not just rely on this secondary data that is provided here but to answer specific questions that are specific to you.

Cindy DiBiasi: This data really can be used to shine a light on a problem in a local community.

Robin Weinick: Absolutely. We are hoping that is how people use it. Our goal here is to provide state and local policymakers, planners, analysts, health officials, local community access coalitions, with the information that they need to meet their local goals. Sometimes that means you need information on how big the problem is or what resources are available to resolve it. So the whole goal here is to put that date out there and as people will see on the next two conference calls that you discussed earlier, and I am sure you will mention again later, we actually wanted to provide some tools as well so we have made those available to people in addition to making the data available.

Cindy DiBiasi: I would like to remind people also that we would like to hear from you to get your ideas for how you might use this data. You were talking about, and I don't want to jump ahead to the next book that is coming out, the updated version, but talking about there is funding for at least one more book. How soon do you see that and what types of comments, changes will you be making in that book?

Robin Weinick: We actually will be starting to work on that as soon as this is done. So we want to get the whole first one wrapped up before we moved on to the second one. At the moment, we don't have, at the moment, any new data to include because we haven't learned about any new data sources since we have gotten started. We will be adding some additional states, as I mentioned. Texas in particular will be joining the data set. We would love to hear from people, "Hey, we know a data source that has information on topic X at the county level." We want you to include it and I am happy to talk to people about the grant.

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