AMCHP 2006 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
March 4-8, 2006
CAROL GILBERT: Ten percent imputed or missing. If you get the data that’s processed by someone else, you should check and see whether they have done imputation for you. But we don’t need to go into a lot of detail on that.
UNKNOWN: No, that just teaches a little (inaudible).
CAROL GILBERT: Right.
MAGDA PECK: Oh, one of the things to give you a heads up about the quality of data and getting access to data. You know, the federal government has your data.
CAROL GILBERT: They do. We send it to them.
MAGDA PECK: The National Center for Health Statistics has your data. It has your fetal death data. It has your infant birth data. It has you infant death data. Your states and territories are required, no, requested and it’s all voluntary, to be able to send that data to the National Center for Health Statistics. The National Center for Health Statistics tends to be a little bit behind and the most current data they have is through 2000--
CAROL GILBERT: Two is all they’re releasing.
MAGDA PECK: --two is all they’re releasing.
CAROL GILBERT: But they have, they have three, but they’re not releasing that.
MAGDA PECK: And so, and they actually now will link birth and death files and have the capacity to combine it with fetal death data. And CityMatCH and the March of Dimes have been working with CDC to assure that we can have national data tables. It does not include the Marshall Islands, does not include Palau. It does not include the Northern Marianas or the Federated States of Micronesia. We can look at that with you at some other time. It does not include Puerto Rico at this point. It has been for the 50 states plus the District of Columbia and new faces, I’m sure, a lot, about giving data to Washington and not getting it back. So, we can talk about that later. For the rest of you in the room, you should know that CityMatCH will be publishing City and County data of PPOR rates in our next City Lights, which is our regular newsletter. And we’ll make sure that you all get copies of that. We also had at our website, it’s citymatch.org, under our PPOR page, national data tables. We’ve had them from ’95 to ’98, from--
CAROL GILBERT: ’98 to 2000 was the most--
MAGDA PECK: ’95 to ’97, ’98 to 2000, and now we’re going to have 2000 to 2002. The most recent ones will also more easily accessible at the March of Dimes website in their Peristats Center. So, these data have been around. And I have the data by, if you will, by the different major areas that, you know, we can look at. You know, so if you want to know, what does PPOR look like from the feds perspective in San Diego, I have that here for you to look at, Anita, over here. So we do have these tables along. So these are some first four steps. Then we go to the next four steps. Talk to us about the map. Tell me a little bit about how you’re going to generate this map, and then we’re going to show them actually how to do it.
CAROL GILBERT: Yeah. We’ve got a picture of the map that’s coming up. But the first step here, the fifth step is, define the study population, that’s the group you want to study. It can be a geographical area or it can be a racial group, whatever your community has chosen. Then you restrict the study population by birth weight and gestational age. Take off the less than 500 gram infants and less than 24 week fetal deaths. Calculate the numbers and rates for each of the boxes in the map. And then, compare those if you want to across different time periods. Look at trends and look at different sub populations within your geographical area, if you have enough, and that’s what the map looks like.
MAGDA PECK: Okay, and that’s what it looks like, because some people look at words and make sense and some people look at colors and it makes sense. So lets take a look at this particular one. As you can see, the unique thing about PPOR. A, we talked about before, it includes fetal deaths, most other things don’t. Two, it links, so we’re talking about the deaths that occur to the actual births that we’ve been able to see, plus the fetal deaths. And we look at two dimensions at the same time. When the baby died and how much the baby weighed. And you will see right up another distinguishing factor in this framework. We have through a period and series of analysis, it used to be 16 different cells, if you can imagine, all these different birth weight categories and all these different times at which babies could die. Well, we, through a series of analysis realized that we probably could consolidate it into these four periods of risk. Now, if I’m a clinician in the room and there are none, but if I’m an OBGYN, I’m going to say, how can you do that? How can you put one box for those tiniest babies because what I’m going to do as a doctor, you know, in the field deaths is not going to be the same as what I’m going to do in post neonatal period, but think about this as a prevention framework. Who said they were a doer? Somebody said that, we heard it as a doer. Thank you very much. The doer, you want to know what to do. I’m saying, do in terms of prevention, not necessarily do in terms of tertiary care. Okay. I just want to be clear about the doing. It doesn’t mean, however, if I’ve got a problem here, I’m not going to explore quality of care in my (inaudible). But my doing is really good, but how do I prevent these deaths from happening? So, we’ve got these. And as you’ll see, we’ve got these four labels and essentially, this is how I explain them and I have a different way of doing it than the numbers would because sometimes the numbers glaze me over, I keep looking at Lisa because she said that. These babies. Have you ever held a baby this tiny in your hand, or seen a baby this small? You have? Have anybody ever had their own baby this small? Some folks know that first hand. My babies were nine pounders. And now they’re six footers, but we’re talking about babies that can fit in the palm of your hand are babies under 1500 grams, or 3.3 pounds. Okay? So, when I talk to community groups, I’m talking about anybody who falls in that blue box, I can fit her or him right here. In order to go larger than the blue box, I put the heels of my hands together, so I can support her head and her rump. That tends to be the, the tiny babies that are, we’ve tended to talk about before as being under 2500 grams. Given what we’ve done in this nation, we really need to focus attention on these babies, because we do really well with these babies. Now, the babies we used to say being, you know, good weight, over five and a half pounds, you got her head and you got her bottom and you could present her to the world. Think about that. Now, these are the blue box babies and we talk in communities about, you know, do we have a blue problem? Or do we have babies that are dying while the mom is six, seven, eight, nine months. It’s a stillborn issue. That pink box of maternal care? Beyond that 1500 grams, but stillborn, never saw a breath. In Omaha, Nebraska, no one talks about those babies, as if they never happened. And what the power of this is to give a name and a face to those pregnancies, which we have ignored in our communities for way too long, for which women grieve. And if there’s any woman in this room who knows about that loss personally, we honor, honor that life.
The newborn care are the babies that are bigger that die in the very first four weeks of life. They’re the newborns that you hold really close to you. Right? Tiny little babies. And the green box is the bigger babes that die after the first month of life, that traditional post neonatal period. Because infant mortality is more than one thing, it’s all of this. We talk about infant mortality or now, fetal infant mortality, it’s too much. It’s a bunch of things. So, our map of PPOR, lets you find out, do you have your greatest gaps in the blue box, in the pink box, in the yellow box, or the big babies in the infant health box at a later? How many of you have never seen this before? First time. First time. Does it make sense to you when you look at it that way? Okay. So, and in your community, which is, remind me?
MAGDA PECK: In Pittsburgh. As a new person to Healthy Start and working in your community. This is an idea. And I bet in Pittsburgh you have a blue box problem.
MAGDA PECK: And you have a green box problem, that’s my guess, because of the higher proportion of African American births. A guess, we’ll come back to that. All right. Carol, help me out here. This is the key. You’re an action person. I’m in my community. I know that my biggest gap is in the blue box. Then I’m going to say, what do I do about that? And there’s so many things we can do. Now, I can say, let’s talk about preconception health. And when the MMWR, Morbidity Mortality Weekly Review article comes out on April 22 recommending preconception health for every woman in this country? And you’ve got a blue box problem in Phoenix or you’ve got a blue box issue in Alaska, you can say, oh, you’re trying to, who was just here talking about Medicaid waiver, Family Planning? Right. Molly. Here you go. You look in Ohio and you work together with the state and you show that you’ve got a blue box issue? And you say, and you rank in terms of your access to preconception health in terms of family planning services, some are in the toilet. You’ve got an argument to make for action. This is a framework. PPOR is data and epidemiologic method. Yes, you need all those numbers. But the key is that if you can frame in your community, Lisa, if you can start talking about what’s the leading edge in different major areas of Connecticut? What’s driving those deaths? Is it these babies? Well, if it is, prenatal care is probably too late. But we need to ask more questions about that. So, remember Carol talked about phase one? Phase one will tell you which of those boxes are driving your problem. Phase two analysis will begin to help you understand why. Does that make sense so far? Now, many of you have seen this before, I know, it’s a review. Are you bored still? Are you okay here? All right. Because I want, I mean, how to explain it is also part of the, the passion issues that go on here. All right.
So, now, there’s a second part of this mapping piece. Once you’re able to distribute and figure out what your different rates and numbers are, and we’re going to walk you through a full example of this. You’re also going to say, not just how high is it but how bad is it? And I’m going to come to that through this, this comparison with some other group that’s doing so much better and ask the question. Not only is it high among our black babies, but which babies are doing the best in our community? Or which babies are doing the best in our state? Or, which babies are already doing the best in the nation? And ask the fundamental question of equity, of justice, which is, if they’re already successful over here having good outcomes, why is it that our babies in this group are not doing as well as those babies already are? We say that again. You pick a comparison group that’s already doing the best. The best possible outcomes and you challenge your community or your state or your territory to say, how come all of our babies can’t do as well as these babies already are doing? It’s not biology alone that says who lives and who dies.
We’ve been able to prevent babies dying in so many other communities and other groups, why shouldn’t all have the same success as some already have. Now this is a very different way of framing it than Healthy People 2010. It’s very different. The government will say, well, we think we all should be here and will set this bar up here. And we all think, how are we going to get there? And I don’t know about you, but in my state and my community, if you tell me what Washington wants us to jump and how high they want us to jump, that doesn’t fly in Alaska? I knew that’s why it rhymed with Nebraska. Okay? Because I don’t care if the federal government by 2010 my infant mortality rate actually should be here. But if I as a community leader and we as state leaders can say, what do we all think it should be and to set that bar according to what’s already experienced by some and then challenge us and say, why would we accept less for our babies? Why? Why should African American babies in Pittsburgh not fare as well as all the babies who are doing better in other parts of Pittsburgh? It’s not fair because we have the means to help these. Why are we not doing to for those? And it changes the argument to an argument of fairness, equity, and justice, assuming that we have the means to make it happen. I’m going over this because I want to make sure we can get not just how to do it, but why to do this approach. Because PPOR is not only about that cool map of framing, but it’s about finding gaps and the gaps are defined by who gets compared to whom. And that’s the power of the community to decide who gets compared to whom. Not some federal government to say, you will be compared to some government goal. But in the neighborhoods of Pittsburgh to say, our babies should do as well as those white babies in Philly. I don’t know what, Kensington. I mean, I don’t know, I don’t know your neighborhoods well enough. But if I were in my own town of Philly because I’m a Philly girl, I would say tell me why my babies in North Philly do not have the same outcomes as my babies out in the suburbs do? Tell me why that is happening and tell me that that is unacceptable. We do that for test scores, for educational achievement. Why are we not doing it for health scores? Okay. I’m off my soapbox. Do I have you with me so far? Okay. I obviously have a lot of passion around this. But hopefully this gives you a tool to put your passions out there, too.
Carol, show us how it’s done. Now that they’ve got the detail about why, lets see about the how.
CAROL GILBERT: Yeah.
MAGDA PECK: And then we’ll give them a chance to even try and calculate it.
CAROL GILBERT: So this is our poor Douglas County that we’re picking on again and this is just those babies, those 300 babies, 236 babies, sorted out according to wear they belong in that grid. So there were 97 babies that fit in the palm of your hand in Douglas County. And the 48 and 44 and 47 are the numbers for the other boxes. And the reason that we have to change them into the rates, which are the numbers on the right, is because how big is 97 babies dying? You have to know first how many babies were born, how many babies there were to start with before that makes any sense. So that’s all the rate is, is dividing the number of deaths by the total number of babies that there were, including the fetal deaths and the live births. So that gives us an idea of how these boxes compare with each other and the first thing you notice is that the blue box has more deaths and a higher rate. This is the overall rate here, which is, all the four boxes added up. And this is not the same as the infant mortality rate. Anybody know why? It’s not the same because for one thing we include fetal deaths. And for, the other thing that we take off, the babies that are too small and the infant mortality rate doesn’t. It just includes everybody that, that gets reported. So, that’s a place to start and then the next slide--
MAGDA PECK: I’ll do that for you, all right?
CAROL GILBERT: Okay, shows what Douglas County did next. They knew they had a black infant mortality problem but they didn’t see it this way, until PPOR came along. If you look at those, those infant mortality rates and those blue boxes, it’s just a huge difference. And the overall rate is just a, I’m speechless. When I saw this, I couldn’t believe it. I wasn’t familiar with this, but, yeah, it’s double the rate for the blacks. And it’s double the rate in this cell. It’s more than double. So that’s it, right away it told us that there was a problem in Douglas County in that box and if you look in the green box, there’s a problem there, too. There’s a disparity.
And what PPOR did then was to try to make a system for looking at that disparity, and that’s when we came up with the reference group plan. Find the group that has the optimum results and they might not be just all the white babies. There’s a special group and some cities use different reference groups than we use. Our standard one is the, is it time to do that one? Our standard one is the white mothers that are well educated, at least 13 years of education, at least 20 years of age.
MAGDA PECK: That are not Hispanic.
CAROL GILBERT: Non-Hispanic, white, yes. And one of the reasons for selecting that reference group is because they have fairly good outcomes. And another reason is because there’s enough of them on a national basis. You can’t just have a tiny, tiny reference group or it won’t be valid numbers. And some cities who do this use other reference groups because they have a high population of another group that does very well. So you, we choose our reference groups. The community can help choose that.
MAGDA PECK: Okay. So, we’re going to select who gets compared to whom. And you can use the standard set nationally or can pick your own locally. And/or you can do both.
CAROL GILBERT: A lot of communities do both.
MAGDA PECK: So here is the standard national reference group. If you were to combine every birth in the nation and every fetal death that occurred during this period, and this period is the reference group for when?
CAROL GILBERT: This is ’98 to 2000.
MAGDA PECK: Okay, so it’s a little older, it’s ’98 to 2000. We’re trying to get a new reference group for 2000 and 2002, and that should be available in the next couple of weeks. It’s right now, you can see that the best outcome in the country is 5.9 of a fetal infant mortality rate. What was it for Douglas County? Do you remember?
CAROL GILBERT: It was 10, yeah, 10.1.
MAGDA PECK: Ten point one. So, we’re talking big gap here, right? And we’re going to look at those gaps, not only overall, but we’re going to look at exactly how big is that gap along each one?
CAROL GILBERT: This shows the calculation that she makes to use that systematic way of looking at what the disparities are. The top line up there with the 4.22.1 is our Douglas County. The next line is the external reference group, which is the national best group. And the third line, all you do is subtract the top, the middle line from the top line. Top line minus middle is the bottom line. And these numbers down here are the important numbers for us to look at. Those are what we call excess mortality. Those are the babies that shouldn’t have had to die. Those are the ones that we have to do something about.
MAGDA PECK: In fact, we say, now, people want to know, how big is the disparity? This is a different way of measuring health disparity. And the disparity here basically says, take what you currently observe, top line, compare it to a group that you all agree you’re going to try and meet that mark, because they’re already doing that well, subtract one from the other and that gives you an estimate of the magnitude of just how much of a difference there is, not only overall, but in each one of the four areas. So where is the greatest gap? Where is the greatest excess in this particular comparison? What color? What comes after that?
MAGDA PECK: Green. Okay, so you can say our biggest, before you said our highest rates are blue and then our highest rates are green, but it doesn’t always necessarily line up with difference, because the rates may play out in different ways. And this is a way of being able to just do that at comparison. And you would do that within your own community. And you can also break this down by comparing the external reference group, the one we just saw before, by different race and ethnic groups. Again, all we’re doing is literally subtracting what we see, what we’d want to see, and find out what the difference is. Does that make sense? You had your hand up before. Does that begin to answer it?
UNKNOWN: I’m getting a little fuzzy about what you were showing before, which is having an internal reference group and what that tells you. So you have your own (inaudible).
MAGDA PECK: Hold that question just a second because we’re going to show you that example. They are, as we said, you can, you can use the national comparison group. We call it the external group. You can use this. And if you do use this, whatever gap you have will be similar in terms of how you calculate it, to everybody else in the country, especially if you want to compare your gap to other places.
UNKNOWN: So you’d be sure that even your best group is not doing as well as the country’s best group.
MAGDA PECK: Now, that’s exactly where we’re going. What would happen if in fact you, if you found, you know what? I wonder what’s the best possible outcome we have right in Columbus or right in New Haven or right in Phoenix because sometimes comparing to some US group doesn’t tell you enough. That would be called an internal reference group. So lets take a look at that overall. Go down here. These are be able to calculate numbers. I’m going to come back to that. What would happen and in Douglas County, that middle strip there? That’s what we would do. That’s as good as we can do in Douglas County. Now, lets take a look at that.
CAROL GILBERT: Look at our overall rate, I’m sorry. That’s our overall rate. That’s the best we could do in Douglas County. Remember the national rate was 5.9 so, yeah.
MAGDA PECK: So I, if I’m sitting in Douglas County and I’ve got to figure out which reference group do I do? My internal one in terms of what’s the best I can do for white women, non-Hispanic, 13 more years of education, right, who are 20 more years of age. If I apply the same characteristics in Omaha? Instead of 5.9, I got 7.4. Ah, well, do I say that the gap, I mean, the gaps going to look a lot less terrible if I just compare to how well we could do in Omaha. Which group do we use to compare to. It’s not just an analytic decision. It’s a political decision. Because you get to decide where you’re going to set the bar. When we showed this in one community, they said, well, we’ll look a whole lot better sooner if we just compare ourselves to the best we can do is 7.4. But why wouldn’t we set the bar even lower? Why shouldn’t we be able to achieve that national 5.9? So the gap here looks smaller than the one before. Does that make sense?
We would like, I think given the interest of time and we’ve been doing this for about an hour and a half, which is the--
CAROL GILBERT: It time for a break.
MAGDA PECK: It’s time for a little break. We wanted to, to show you essentially the, some of the page down results that we can get to. And we’re going to give you a chance to do some calculations around it, without doing a whole lot more numbers right now. We’ve got examples here but we’re going to show them through the exercise, what they’re going to do. Do you think that’ll work?
CAROL GILBERT: Do the exercise and show them the slides? Do you mean to help them with the exercise?
MAGDA PECK: Yeah, to help them with the exercise, yeah.
CAROL GILBERT: I didn’t know we were going to help them.
MAGDA PECK: Okay. This is what we like to do. We’ve given you the why you’re here. We’ve given you the why PPOR might be helpful. We’ve given you the first, actually and second cluster of steps to do in our steps of analysis. We’re gong to take a few minute break and get a little breath, ask you to come back in about five or ten minutes and when you do so, we’re going to ask you if you would, take your chairs and be at one of these two tables back here, just to have a little different perspective. We’re going to give you a chance to practice, actually how to calculate some of the rates and why it might be helpful for you to look at it. We’re not going to spend a lot of time on analysis, but we do want to make sure you have some chance to play with the numbers. And then we’ll come back and then follow through, what would you do once you had that particular map? Does that make sense? All right. Five or ten minutes, because it’s really hot in here and it’s hard to stay awake and you may have to get yourself some water and we’ll take it from there.
MAGDA PECK: Are you ready? Can you still stay with us? You can do it. Come on back and we have a new person joining us, which is good because we had someone leave us, at least one person we know who left us and slipped out the door here. Lisa, still with us? Not yet. Or she headed out.
CAROL GILBERT: She had to leave, yeah, she knew she had to.
MAGDA PECK: You know, (inaudible). I feel like, you know, did you ever see the Sound of Music? Yes, (inaudible), and we know that the restrooms are far away and (inaudible) find them. They decided that the ones close in were broken. Okay, if we encourage you, if you leave now you’re going to miss the punch line, so stay with us, the good stuff is still coming, okay? While you’re here, tell me about any impressions or thoughts that you have right now. If I were just to say to you, what are you thinking about now? What questions do you have? What’s your impression so far? Are you enamored? Do you find it tedious? Just, you know, what do you think? I think I’ll look for a little pulse of the room here.
UNKNOWN: I think it’s making (inaudible).
MAGDA PECK: Making more sense. Good.
UNKNOWN: I meant, even our program and the way that we look at our data.
MAGDA PECK: Uh huh.
UNKNOWN: It’s making more sense.
MAGDA PECK: Oh good.
UNKNOWN: It’s not something that I’m, I’m not a data person, I’m a clinical person.
CAROL GILBERT: This is the person that figured out how to do all the calculations herself.
MAGDA PECK: Oh great.
CAROL GILBERT: She’s not a data person.
MAGDA PECK: Okay, so it makes sense and sometimes it makes more sense particularly when you actually, you do it. You know? We’re so used to out sourcing this and saying, well, our data person will now speak about the data. And it has to make sense to you and if you think about what you’re doing in Healthy Start and what’s happening in Pittsburgh about sorting it out and figuring out where you’re going to focus your energies and efforts, then this gives you a powerful tool to do that. But you’ve got to believe in it and it’s got to make sense to you. You don’t have to all speak. I’m just sort of giving you the chance as I do the pan of the room. Observations or reactions so far? Questions?
UNKNOWN: I think she had the same reaction that we all had when it was first introduced to us, that it gives you an additional dimension in which to work with your community at a level that they can understand.
MAGDA PECK: And you’ve seen it before. Do you get, is it boring because you’ve seen it before or does it help to get a refresher?
UNKNOWN: I think it helps to get a refresher and that’s why I came. I said to her, we made a decision after PPOR. We were working in target groups. We had a project service area. We made a decision to expand county wide based upon looking at data in a different way. So we’re not just in the target area that we were. We’re not (inaudible).
MAGDA PECK: Which is very powerful for political will, to wed the fates of those babies so it’s not just that part of Pittsburgh.
MAGDA PECK: Interesting. Any other reactions here?
UNKNOWN: Ohio is already working on some initiatives based on the results of the last (inaudible) analysis they did and I came in after that had been done and after those decisions had been made. And some things were explained to me about why and how but, I didn’t really understand and the write-ups I’d seen didn’t really make sense to me. So now seeing this, I understand why and how and what they’re doing, but it’s also helping me. I think I’m going to go back to what was written up and having looked at it before your explanation and now thinking about it with your explanation, I think I can go back and hope, write up better explanations that sort of explain it in a way that maybe the next person who looks at it fresh without having heard the background, can understand the output better without having to hear all--
MAGDA PECK: That’s helpful. And everybody in this room is so different. We’re coming to it from different places so, do you have anything else you want to add? Any comments over here? Not obliged.
UNKNOWN: Well, just this is very helpful. I’ve seen the Ohio color blocks and I had it. So I was looking at the PowerPoint for all that last night and it made no sense. And it does now, so that’s, that’s just invaluable stuff.
MAGDA PECK: Oh good. Okay. And you now are thinking that blue box is my future.
UNKNOWN: Uh huh.
MAGDA PECK: Right? If you want to get that Medicaid Family Planning Waiver, you’re going to need to figure out how to make the argument out of that blue box, which we’re going to come back to in just a second overall. How about ladies here. Any questions or comments? Is it beginning to make a little sense? I’m not even sure it’s relevant but maybe you’re thinking, oh that’s sort of cool.
UNKNOWN: Yeah, first I was like, (inaudible).
MAGDA PECK: Oh, okay. And when you think about, how could we use it? I mean, and we have a new person joining us and she’s got to leave, come forward Isadora. Come up here in the front so we can see here. Come sit over here with us.
CAROL GILBERT: There’s a place right here.
MAGDA PECK: Would you introduce yourself as you’re walking up? We have somebody who is, signed up for the workshop but was late coming, and so we want to make sure you’ve had a chance to say who you are.
ISADORA: I’m Isadora (inaudible). I’m a (inaudible), had a long career in different fields. I have four children and five grandchildren. And recently I moved within the Maternal Child Health (inaudible). I moved from the office of Adolescent Health to the Division of Healthy Start and Perinatal Services. And my title is Perinatal Health Specialist. And I know a lot but I have a lot to learn.
MAGDA PECK: Good.
ISADORA: And I’m happy to be here with you.
MAGDA PECK: Well, thank you and--
ISADORA: And I apologize, I was at another meeting so.
MAGDA PECK: Well, we’re so glad you are here because it’s been a combination of March of Dimes and CDC and HRSA, MCHB, Healthy Start resources that have allowed CityMatCH to be able to do this work, so. Thank you for, we appreciate that very much. Okay. Well, we’ve got about 50 minutes, which is going to give you a taste of phase two analysis but not too much, because more data is not better. And it’s in the phase two Molly, that we’re going to make the, ah ha connection for you about using PPOR. Oh, don’t you want to come on back up?
UNKNOWN: The lightings better here and I’m actually expecting a call that I’ll answer (inaudible).
MAGDA PECK: Okay, well let Anita bring up the rear. Thank you. I won’t be too pushy on that. Thanks Anita. I appreciate that very much. Okay. So what we want to do is to, this is, this is the piece here that we never want to lose. If you’re able to identify where your greatest overall, where your greatest excess is, right, the estimated excess number of deaths, then you’re going to say, you know what? Lets go deeper. We don’t have to analyze every one of these four boxes and in fact, the yellow box in this nation is amazing. We should, but I will tell you a little tip. This is what makes your Neonatologists happy. You want, you don’t always need bad news. You say to your state Senator, the good news is that we have great technology in our Neonatal Intensive Care Units that provide in this state fabulous care once tiny babies get there. And it’s, and the best news is that if you can get a baby that’s this big or bigger, meaning bigger than the under 1500 grams. You know, you can say to him. This is not good news but once you go like this or bigger in that first four weeks, we have the best state in the nation to save those babies. Those doctors are amazing. You go to your medical society and you say, you doctors are awesome. And that, because you’ve let them off the hook. Now, the Perinatologists aren’t so happy because that pink box of stillborns is the dirty secret of a lot of communities that no one has opened up that box of babies that are this big and bigger dying before taking a breath. That’s the secret that we must all uncover. So every community has a pink box, further exploration to look at. Every community does. And we already know a lot of what we need to ask in that green box but lets begin to look at it a little bit more in detail.
All right, so, with that, we’re going to go into phase two and Carol and I are going to do a tag team back and forth around this. And again, in case you were already exhausted, we’re only at step nine. You’re thinking, ahh. You know, your community partners don’t need to know that there are 14 steps to PPOR analysis. Don’t tell them. But the folks at the University of Pittsburgh need to know that there are 14 steps to PPOR or they’re not going to buy in. If they don’t buy in, then you’re sunk. So that’s why we have both the detail for the science and the aggregate or the collective for the policy makers. Just think of the triangle points. Does that make sense, so? We’re going to make you suffer through 14 full steps. Here we go. Are you ready? Carol, tell me what happens in these three phases, these three different things of PPOR analysis, this sort of phase two, this follow up of the why.
CAROL GILBERT: When you’re trying to figure out why these deaths are happening, there are three different ways you can go about it and you may use all three if you want to. The first way is to look at, is to do your community health and systems assessments. You just look at your community, see what’s available, what’s being utilized and for which groups it’s available. The second one is case reviews and fetal infant mortality reviews is the best known one. And then the third way, which is what the rest of the steps are about, is the further epidemiological study within the period that’s most, all of these take place within the period that’s most important (inaudible).
MAGDA PECK: And the other piece you should know is, it doesn’t mean necessarily doing brand new stuff. In fact, what you might want to do, is go back to your needs assessment data and then say, well, lets tease out the stuff that would only correspond to the blue box. What do we know, not about infant mortality, but what do we know about fetal and infant deaths this big? Ah. So you can reexamine the stuff you’ve already done, recycle it if you will, but through a much more, think about it as sharpening the focus or the lens to being a, a little bit more specific, so, because a lot of those needs assessments, if you’re doing for Title V background stuff, is big for everybody. And this allows you to go specific and focus overall and that’s both FEMA as well as the health assessments that you’re already doing. Carol?
CAROL GILBERT: We can’t always, we can’t, this is just going to the epidemiological route here. We’re not covering what you do in needs assessments. We’re doing just the little epidemiology part and we don’t expect cities or states to do science, to do scientific research based on their vital statistics data, vital records. It’s just not going to work. We don’t have controlled studies. We don’t have new variables. We have, we have just the information from vital statistics. So instead, we’re going to use scientific thought and reasoning and information that we do have to sort of get at the causes of death. So we try to eliminate from consideration factors that aren’t likely to be contributing and we try to find and target factors that are likely to be contributing. And the way to do that is if it’s known to cause pre-maturity based on scientific studies that have already been done, then it’s a likely contributor, but it also has to be more prevalent in the group that’s having the problems. So if you can put those two things together, then you’ve got likely cause, it might stand up in court. So you look at prevalence and that’s what phase two is about.
MAGDA PECK: So how did we do this? What are some of the further investigations in steps 12, 13, 14 that we could do.
CAROL GILBERT: Yeah, it really shouldn’t have been nine on that slide, I think. It should have been 12.
MAGDA PECK: Yeah.
CAROL GILBERT: The first thing you have to do is find out what’s causing the deaths in the sense of what’s that biological cause? What’s the underlying reason for most of the deaths in that period? The second thing is to estimate the prevalence of risk factors and preventive factors, they might be services that are available in one group but not available in the other. And then to estimate the impact of the risk factors and preventive factors. You have to also take into account the size of the population that’s receiving that has the risk factors, so.
MAGDA PECK: How about some examples of that? We’ve been doing some work that would allow us to, and these protocols have been developed?
CAROL GILBERT: Infant health deaths, to look at the biological mechanism for the deaths, we use cause of death information that’s on the, that’s on the birth, on the death certificate. So we actually look at those and group them into groups and one of the groups is Perinatal Conditions, which is sort of a vague term. One of the groups that seems to come out a lot is SIDS or SUID and now there’s a lot of issues about how those are defined and how they’re reported. But that is a large source of deaths in a lot of cities.
MAGDA PECK: So what we can tell you is that on the CityMatCH website, we have developed written protocols that would help your community and it’s in the larger pocket, so if you want us to send you the full packet with the CD and all that stuff, we would have that available and we’ll send that to you. That has protocols about here and you really want to focus in on infant health and you want to focus in on the causes of death and analysis you can run. We’ve got all that written out as a protocol about what you should do. Similarly for that tiny blue box area. We’ve got protocols about different kinds of analysis that you can fun if this is the direction that’s part of your analytic plan. So you don’t have to sit there and say, well, what do we do now? So think of it as you’ve decided to go to a certain city and now you’re going to find out the map for a certain part of the city. So those protocol, and we have ideas about how to approach maternal care, the stillborn area, but that’s really under development still, because that’s a new area for many of us in the nation. We’re trying to develop that together. There’s a number of other data sets that people may want to pull in. You want to talk just briefly about that?
CAROL GILBERT: There’s a lot that vital records don’t tell us and some really good quality data is available from your local hospitals. They do look at those discharge records and they might be willing to share them especially if you’re not telling them that they’re in ICU, sort of the problem. And PRAMS is another high quality source of data that you, you can’t get information on. I said, smoking before and drinking. PRAMS is a better source for that information. So we encourage you to look for, look in other places, whatever look, whatever’s there. Find what you can and use it.
MAGDA PECK: But also use the map to decide what data you’re going to look at. Otherwise, you’re going to go on a fishing expedition (inaudible). If you’re really looking, if you’re really exploring infant health, look at the issue of injury surveillance for babies who died in the first year of life, who were greater than 1500 grams at birth. That will allow you to be much more specific and not have all kinds of other things mixed in. So it allows you to target. Go ahead Beth.
BETH: Well, if we’re looking at kids who died, like PRAMS isn’t going to include, well, I guess, that goes with the field, any information on (inaudible).
CAROL GILBERT: That’s true. It won’t include those. But it will include those prevalence’s of risk factors. That’s what you’re going to look for.
BETH: Among those target fields.
CAROL GILBERT: Yeah, right.
MAGDA PECK: Yeah, okay.
CAROL GILBERT: So, and there’s, in those protocols, the guidelines that we give on the CD, it lists factors that you should look at and there are more, probably, that are coming up all the time. But--
MAGDA PECK: Okay.
CAROL GILBERT: Does that help? Does that help?
MAGDA PECK: Let me do one more and that is there are series of epidemiologic tools and eight out of 20 people in this room don’t need to know this in detail. But for the row of quantitative people here, these are all different ways in which we can in fact use a series of epidemiologic tools to help us answer the questions of targeted phase two analysis. And we’re going to give an example of just a few of those in just a sec.
CAROL GILBERT: And the point of this is that, phase two isn’t some new invention. It’s using the epidemiology in a targeted way.
MAGDA PECK: Combining the map with things we already know how to do. Let’s do an example and I’m going to look to Molly for this one, because she’s, you’re thinking what does this mean? I can see it. She’s got the look on her face and Lisa is right there with her. They’re like the, oh, my gosh, how are we going to explain? You don’t need to explain this to anybody else, but this is, there’s an ah-ha moment here, because of what this does. Do you want to try it and I’ll summarize when you’re done.
CAROL GILBERT: The, I told you the infant health deaths, we look at the cause of death information. For those little tiny babies the cause of death information is not very helpful at all. Almost all of them come out perinatal conditions or something like that. So it doesn’t help you. But one thing that we can do for those tiny babies is we can look at whether the deaths, you can compare your community to the reference group and look at whether the deaths happened more because of too many babies being born small or more because of those tiny babies, once they’re born, they’re not surviving as well as they do in the reference group. So that’s something that’s really important and it helps you steer your further analysis to know which kind of problem that is.
MAGDA PECK: Yeah, (inaudible) is an interesting thing. I, as the non-data person in the room, sort of, this used to really intimidate me. So let me just tell you what the power of this is. This allows you to answer the question. You were to calculate it in each of your groups, how many estimated excess deaths there were in that blue box. And it was actually, Molly, look on your sheet. Do you remember on your blue sheet how many it was? The estimated number of excess deaths in that three-year period? You know which one I’m talking about?
MOLLY: Which ones?
MAGDA PECK: In the blue box.
MOLLY: I’m sorry.
MAGDA PECK: Anybody else can help out, I’m just picking on Molly. Okay. What did you come up with? Do you remember?
UNKNOWN: I’m not sure which deals you’re asking.
MAGDA PECK: It actually came, it probably would be on your blue answer sheet. So we’ll got to Jill over here and let her cheat sheet here. We said, how many in the overall, how many maternal health and pre-maturity lets say for the external. Forty-six, right? Remember we said it was about a hundred. It was a hundred and one, we estimated a hundred babies that wouldn’t necessarily have needed to die, right? And 46 of those are this size? You with me so far? So this asks the question of that estimated excess, of that estimate, how many of those could we estimate die because they were just so tiny, they just didn’t survive and, you know, something about the care in the neonatal intensive care unit. Our ability to care for them. How much of it has to do with what’s called birth weight specific mortality versus birth weight distribution. And if you sort it out, those are two questions, as Carol said. Is the estimated excess because there’s just so many tiny babies being born? Or is it because we’re not saving them once they’re born. Is it too many, or somehow we’re not doing enough for them once they’re in our hands. This is the way you partition out. Two thirds are because the load is just so great. We’ve got so many of these. Two thirds of that 46. Two thirds of just an overall overload of tiny babies coming into the world. And only about a third in our community are about better quality of care, better access to neonatal intensive care units. And I will tell you in Ohio, who’s Ohio. Ohio is actually 95 and five percent. Ninety-five percent in your excess in a previous analysis was birth weight distribution, an overload of the tiniest babies. And only five percent could be accounted for by the care they got once they were born, so, so tiny. So if I have that, when I interpret that I go back to Molly’s question. The answer from your Senator says, well, obviously we need more money going into our neonatal intensive care units. Obviously we need more transport and helicopters to get those tiniest babies to where they need to go. And you say, no Senator. Our analysis shows us not only could we be preventing deaths among these tiniest babies, but even more of the best care that we have to offer, technical care, medical care isn’t going to do it. We have to think about how we’re going to prevent them from being born so tiny, so soon, in the first place. How do we do that? How do we prevent these tiniest babies from being born in the first place, because we’re, in Ohio, we’re saving most of them once they’re there. So how do we, how do we do that? Well, you know, you say, you know all this, we don’t know how to prevent pre-maturity yet. But we do know this. That if a woman is healthy before she’s pregnant. If a woman has medical care identify that she needs for herself and her baby before she’s pregnant. If a woman intends to be pregnant and she wants to be pregnant, the likelihood of this happening in the first place isn’t there. So your argument, and you’ll go back to your Ohio people and you guys can figure out Kitagawa is a very powerful Ohio argument to make. They will argue from preconception care and preconception health. It’s not a cause and effect. But if I wanted to increase the odds of better things happening, I’d probably have healthy women before they conceived and they would conceive when their ready, wanted to conceive. Now, I don’t know if that will convince your Senators, but if they were to say, well. They’re so tiny they must be dying in the NICU. Well, you know? The rate of, you know, we’ve got great care in Ohio. Those doctors, they’re fabulous. So those arguments, you do not want to show any Senator a Kitagawa map. Right?
CAROL GILBERT: Right. They don’t like that.
MAGDA PECK: They don’t want to hear about Kitagawa. But if you can interpret it in English, which says of the excess that we found that we’re estimating, how much of it is just an overload of too many babies born so small and too soon.
UNKNOWN: My question though is, what if the Senator of (inaudible) says, well, there’s this other proposal floating around to increase access to prenatal care, to increase the (inaudible) limit.
MAGDA PECK: Right.
UNKNOWN: Why don’t we just do that? Why do we have to do the birth control? Why preconception? Why not just get these women in for prenatal care?
MAGDA PECK: Because what we do in prenatal care by the time they get in, doesn’t necessarily help their survival for being so small, so soon.
MAGDA PECK: And most, most places have fairly good access to prenatal care at this point and fairly equitable access to prenatal care. So you won’t find that distribution, that risk factor prevalence difference that you need--
MAGDA PECK: --to show that it’s important. It won’t be important probably.
UNKNOWN: So can you take this and then look at entry into prenatal care, then draw some conclusion that this would be the same. And does it matter if a woman entered during first trimester versus third? So then it goes back to the (inaudible).
MAGDA PECK: That would be a really nice way to combine. No one of these phase two stands alone. You want to go back to that needs assessment that you already have about entry into prenatal care, that’s the risk factor analysis together with partitioning out what the driver is for this point of mortality. Really nice question. Again, that’s the idea. You’re going to have to weave a story. There’s no one single answer. PPOR will tell you it’s the tiniest babies. Prenatal care. We have not, we have not proved or decreased the rate at which babies are born under 1500 grams in over 20 years in this nation. You show them the graph of very low birth weight. You show them your blue box line plotted out and you will see that it is flat. We’ve done squat on decreases in very low birth weight, and in fact some of it’s going up. Now, here’s what he might say. Well, how much of that is just all this assisted birth stuff, you know, for people who can’t get pregnant? How much of that is just that fertility drugs that’s driving it? Well, that’s another phase two analysis that can be done. Carol?
CAROL GILBERT: Yeah, you might be able to, as I was telling my group, in Omaha the people were convinced it was multiple births, so they did the PPOR map with only the singleton births and showed them, well, there’s still a problem. And you might be able to do that with your prenatal care moms. Show them a PPOR map with just the moms that got full, complete, prenatal care and show them there’s still a problem. That might be a good way to show it.
MAGDA PECK: So you would tease it out and then focus it in. Does that make sense? The (inaudible) phase one gives you a basic direction to head in. Phase two allows you to unravel the mysteries a little further. Let’s give a couple more examples of this. This is just cause of death piece, Carol?
CAROL GILBERT: It’s just the same thing I said before. In a lot of cities this happens that SIDS is the largest chunk of that infant health, that green box. So this is just that shows you how to get to that underlying biological cause of death thing.
MAGDA PECK: And we know that the classifications are changing and I don’t know if any of you are on the state to save SIDS list serve? I’m on it and I get like eight a day. It’s the noisiest list serve that I’m on. You’re laughing?
UNKNOWN: Yeah, I agree with you.
MAGDA PECK: I was just, I was, I had an opportunity to keynote the CJ Foundation National SIDS meetings last week in Philadelphia. You know, and my talk was not a technical talk. My talk was about let’s stop whining with each other about some of the classifications. I mean, we’re missing the point in a certain way. But there’s new language and there’s better diagnosis and I think that’s great. And we’re able to tease out that SIDS is not just SIDS, but SIDS is what’s leftover when you’ve been able to take out the mechanical injury and the suffocation and the overlay and the bed sleeping and all of which we need to tease out on our green boxes. That’s the data piece that I’ll give you. Let’s assume, let us assume that, hi there. Would you like to join us?
UNKNOWN: Hi, I’m just here to see my daughter.
MAGDA PECK: We promise that you can talk in the back, but keep it quiet, okay? Okay. All right, so. Let us assume that you have decided that you’re ready to do PPOR in your community or it’s already happened. Let us assume that you have done your community readiness to make sure that you’re never going to do this alone. You know how there’s this little caution, do not do this at home alone. You know, kind of warning label. There’s a warning label at the bottom of PPOR. It is only best done whoever you want to know things so that things can change are the people who should be involved from the very beginning. If you bring this to them, and I, this is where I think that the mistake has been made. People get so excited about these boxes, they show all 27 color coded slides to people who couldn’t give a hoot about it. They just want to know that you’re all on the same page. So, but let’s assume you did it and you had a community coalition that existed or statewide coalition that existed that, or a new one that was formed or reconstituted and you became educated and you did your comprehensive PPOR analysis and you integrated your other needs assessment and you have sort of, truth has immerged, okay? You know, da da. Okay.
So, now what? Now what happens? And this is where we find that a lot of communities, a lot of states just sort of like lose it, because they got so exhausted by the 27,000 meetings and 27,000 colored slides that, you know, it’s like now what? So I want to go to the action piece here, the action actually went right, because this is your point. You’re not going to be happy unless we get to action. The data’s been interesting but move on, right? So, given that we’re going to talk about in our last little bit of time, moving from stage three to stage six, because most places get stuck at stage two and they analyze and analyze. The community comes back and says, oh, one more question. Oh, one more question. Oh, one, there’s a point at which you say enough analysis paralysis. Move on. So towards that end, we need to like sometimes have little miracles. You know, sometime it’s okay to not have every piece of data explained. But when you know enough to move on and you have your community partners and this is just one example of one community coalition that came together and this is a community that never had any coordinated infant mortality work beyond its Healthy Start coalition. Much like you said, you had a target area and Healthy Start was in one part of town and this helped you to think about having a more county wide approach. That’s what happened here in this community that I’m going to describe to you as one example of going from data to action. So, you might want to recognize, you know, all the different partners that you may have in your community and the usual suspects that you bring together over all. We were able to say that there were four things that we learned about PPOR and to try to put it in language that everyone could begin to understand. The very low birth weight is the biggest part of fetal infant mortality for every woman and child in our county. If you’re black, if you’re white, if you’re Latino, if you’re a native, everybody has that in common. That was point one. Point two, compared to other cities, and this is, I’m going to put it in terms of a little bit different language, because this is more technical slide than the one we usually use. Remember that 66 percent, 33 percent you saw on that Kitagawa? This is what this is. The pattern of that is very different in this county than in other parts of the nation. Usually, it’s like 90 or 95 percent is the overload of pre-maturity. And only five or ten percent is the survive--