July 22, 2009: Morning Session (continued)

Lisa Simpson: To just finish then, the last point I wanted to make is on the comment earlier about the size of the set. In this paper that we are publishing recommendations on CHIPRA implementation, I think I want to underscore the point you made of a core, of more measures because States are in different places, and to assume that all States can do everything—and we do not want to go to the lowest common denominator and by putting more measures into the set for recommendation, those sets that do not make it into the final, final core, at least they send a message to users that these were really good too. And if you want to measure this domain, do it this way because this may end up in the core set eventually. And so I think that "more" is a good way of thinking about this because it sort of allows the States who are ready to invest in more measurement capability what directions we think might be useful.

Rita Mangione-Smith: Marlene?

Marlene Miller: Well, I just wanted to continue the theme I guess that Glenn really sort of first raised and at least push us when we say that our beginning point is measures that are in use. It seems to me as I look through this, we have taken a very—and perhaps we need to or we are being asked to—narrow approach of measures in use by Medicaid programs. So there are lots of measures that are in use by States, mandated by States, and I'll take the example of catheter-associated bloodstream infections; half the States mandate reporting to the CDC [Centers for Disease Control and Prevention]. It would be a travesty, and I'm a constituent of that measure, to not require that we report this for all States when there are millions of dollars being put into adults measuring this. So it is not in use by Medicaid systems, but it is in use by many, many States with the infrastructure set up by CDC, for example.

I mean if you take this approach and you look down any of these lists, I mean even the ones that made the validity and feasibility or the ones that did not, it is an exceedingly ambulatory focus. And if you talk about importance and impact and dollars saved, we are leaving off hospitalized children, children in emergency rooms, and that I think would be a sad opportunity that we would lose if we do not take a different approach. So I guess part of this is a question to you. Is it narrowly defined that these measures at first pass have to be in use by a Medicaid system as opposed to a State?

Rita Mangione-Smith: That is our understanding, but Denise, chime in.

Denise Dougherty: Okay. I guess we were thinking about that, too, and tried to find out—and it is not easy to find out what States are doing, which is why we are doing this environmental scan. But can the measures in use by States—are the measures currently in use reportable for Medicaid and CHIP programs? Are the States taking that tack? In which case, then there is a—and that is very difficult to find out.

Marlene Miller: That is very difficult. I mean I think if you take that tack, you will continue to exclude hospitalized children and children in emergency rooms because you will be asking all of those entities to segregate their populations and report data separately. I mean I think there is an opportunity here for Medicaid to be the policymaker and require the States to get it in. And then, not only do we improve the health of children on Medicaid, but we improve the health of all children, whether or not they are on Medicaid, by having it be the policy driver.

Carolyn Clancy: On some level, I would expect that we will finish this 2-day meeting with quite a few unanswered questions, and I think the one you have just raised is very, very interesting.

Female Voice: [inaudible]

Carolyn Clancy: Okay, yeah. Okay, well never mind—legislation.

Female Voice: But what it says is exactly what Marlene just said which is [inaudible] identify existing quality care measures for children that are in use under public and private [inaudible] health care coverage when they need them.

Carolyn Clancy: My only pushback though a little bit is lots of States—20 odd, 25—have mandated something about infections. As nearly as I can tell with the exception of California and a couple of others, the follow-through on the mandate is still a work in progress for many and, obviously, what goes to the NHSN [National Healthcare Safety Network] cannot be publicly reported at this point in time. So I love the measure as well, but I think the implementable now has to be a frame that we do not lose.

Female Voice: Well, then, if we even go beyond that, I will just end that we have to think we do a disservice if we do not have something in here that considers hospitalized children and children in emergency rooms, if we only solely focus on ambulatory care, solely with nothing else for the impact on the potential cost savings in health care reform that the quality movement can push in that arena.

Rita Mangione-Smith: You have been waiting a really long time so—sorry, I could not see your name.

Ann Clemency Kohler: It is Ann Kohler, am I on? Okay.

Female Voice: Thanks, Ann.

Ann Clemency Kohler: I represent the State Medicaid Directors. I have to say quality is very important to Medicaid directors and I think I can say the same for the CHIP directors. I mean we talk a lot about it. We spend a lot of time. The States have done a lot of work on it. We are pretty heavily engaged in electronic health records to help improve quality. I mean Alabama has like 98 percent of the population in our database.

But States have no money, States are actually—I think California has pretty much taken down their CHIP program and their [indiscernible] program. States are in severe crisis, and we expect it to continue next year and be even worse. So I do not think that you will have States say, "Yes, I'm going to reprogram my computer to do this." What you may have is that they will not report it because they simply cannot report it; they cannot make a change. If we are doing something more long term, say, in 4 years, it will probably be a different situation, but I cannot underscore how difficult it is going to be for States to make any change right now. They just have no money; they are bringing down their programs.

Rita Mangione-Smith: I think it is really important, too, for us to keep coming back to this is the first step. There are many, many more steps to what was laid out in the legislation that will provide opportunities to expand the initial set. So this is not the end, you know it is just a beginning, and it may not be—it is going to be far from a perfect beginning but you know, go back to what Carolyn said, we need to try very hard to not let what we see as the perfect be the enemy of the good, of getting something here. That is certainly better than what we have now but not the lowest common denominator. I think we can get beyond the lowest common denominator.

Female Voice: Okay.

Carolyn Clancy: And just by way of a true confession, I do have to say that being in Washington this week, certainly what is fresh in our brains is hearing from the governor's pushback on health reform writ large, right? "Hey, expand Medicaid, what an idea. Whoa, ho, ho, wait a minute. I'm laying off teachers, hold on." I mean that is—so I hear you. Thanks.

Mary McIntyre: I wanted to speak from the State's perspective with the State Medicaid programs. Specifically, we do have a lot of challenges. Currently, even under certain things as far as what are in the 90-10, where would the 10 percent come from? But specifically in looking at measures, I had—been written early on when the Centers for Medicare & Medicaid Services (CMS) compendium was shown about the struggles, some of the difficulty in knowing specifically what the technical specifications were. When we were trying to implement what we call measures that were consistent with that being able to purchase like the HEDIS [Health Plan Employer Data and Information Set] measurement set.

I'm going to give you an example. In my current budget, I have nothing when it comes down to buying like software, information related to publications and other stuff because it was stripped. I mean we went line by line, and basically everything was pulled out. It was not administrative related, very little travel funds at all within the whole budget in order to try to reach that 10 percent or 12 percent cut. And then in doing it, we actually, the only way because we determined—and I'm going to give you an example. We tried to do the immunization for 2 and under. We ended up putting and calling ourselves going through what we thought was working with our people in our statistical area, what we thought was consistent with what the specs were, not really having the detail with all of the specs to go from 33,000 to zero by the time we got to the end as far as looking at all of the immunizations that they were supposed to have.

And so when that was brought to me, I looked at it, and I said this cannot be right. So I take the little stuff and start looking at the procedure codes, you know what was put in for CPT codes, and I said, "Well, it appears that everything that was put in here is correct." So gaps in coverage, where does the information actually reside? The fact that these children are under 2, some information may be in the immunization database that we do not have; things like that. It kind of brought it home to me—here we are trying to do something that I thought was really simple because we were trying to look at EPSDT [Early and Periodic Screening, Diagnosis, and Treatment] measures to get ahead of the game only to end up with zero when I started out with 33,000 children.

So just know that we have not tried, that States—you know, some of us, we are really struggling. And I finally ended up getting another program that had money to agree to purchase the HEDIS measurement set. We have gone through a whole lot of rigmarole to get it done because it was outside of my program. It was not my division that I was making a request for, so I had to show that it would be for the benefit of the other entities as well as for us. So keep those things in mind when we are looking at this. And I do not think it is not that we are not trying to do it. We are really, really strapped from the standpoint of resources. I have a total of four people in my quality division. I had 20, okay? We have gone down because people had to be moved to other areas that were felt to be like eligibility as in other areas that are felt to have a higher need. So a lot of the staff that I had a year ago I no longer have, so I'm down to four people when I had 20 people a year ago, okay?

Jeffrey Schiff: I think we are—Cathy, I think will take to your comment and then we will sort of end this part of this discussion.

Rita Mangione-Smith: Microphone—

Cathy Caldwell: Mary and I are from the same State. She represents Medicaid, and I represent CHIP which is in public health. All the limitations that Mary talked about, we certainly have as well. Now, from staffing, we are probably a little bit better because CHIP has a little bit more money, and public health for whatever reason seems to get things approved a little bit easier than Medicaid in Alabama.

But being in public health that also is the owner of vital records, we have an impossible time even doing any type of immunization reporting on our population. There are just huge efforts and, I mean, huge issues to overcome and we have not really been able to accomplish that. But even on some of the HEDIS measures that we can fully report on, understanding the meaningfulness or the lack of meaningfulness to the State because of some limitations is huge.

One is well-child visits. That is one of the measures that CHIP reports on through our annual report. We can produce the data. We contract with Blue Cross and Blue Shield of Alabama; they can run the HEDIS measures for us. But there is this culture of coding. Now, we are all fee-for-service so if a physician just—and I do not even think it is reality anymore but if the culture is that if there is any legitimate way to code a well-visit as a sick visit either to get coverage for it or to get enhanced reimbursement for it, that is going to be done.

So when you look in Alabama's reporting, when we are up in the 90s for access to care, and we are maybe in the 30s for well-child visit, you are talking about coding issues that I cannot tell you how it needs to be weighted, but it is reality. So I can tell you that I think it is a wonderful measure. We all need to know that. I can also tell you we have the data, but what it produces is meaningless.

And then one other thing that I would make an appeal to this group from a State perspective, Cindy mentioned the coverage being so vital. I think all of us know that it is so much more complicated than that, but without that insurance coverage it makes it very difficult for the children to get the services that they need. Helping States come up with the way to measure that continuity of coverage because there are so many children that may spend 1 year in Medicaid and 1 year in CHIP and 1 year in private insurance and 1 year uninsured, so in my mind, what is vitally important is some way to demonstrate that there is continuous coverage for the children. It does not matter that 50 percent of the kids only stay in my program for 12 months; some of those leave for very good legitimate reasons. And so [we need] some way to look across programs to capture that.

Jeffrey Schiff: I just wanted to make a comment that actually built off of what Lisa said, but I think also relates to what you had to say. This is part of the process issue. I am somewhat concerned that I think that what Glenn had to say about sort of building some creativity or how we build the specifications will make a difference. Now that will be something that will obviously have to happen along with this process. But I also think that one of the challenges we are going to have when we get to importance is maybe stating that something is really important, but because what is being measured now is relatively irrelevant, an empty chair or an empty box would be better than what we have, and that would put pressure perhaps on the next phase. And so I think when we get to this importance conversation, we are getting to tomorrow already, is we may choose to say that. And I see a colleague from CMS coming up so I must have triggered something.

John Young: No, that is good. It is always dangerous when you turn the mic over to me like this, Jeff. Just one thing I need to make clear if I can—I'm John Young, technical director at CMS, and I have sort of been one of the frontline lieutenants on the ground making sure that all this is developed, and we go through this legislation day in and day out.

One thing I will say is this is voluntary to start out with—that is first and foremost. I think the conversations that we have heard here at the table, I mean that is okay because in this first year, I like to look at it as sort of a testing ground. We are going to test out through a couple of means, through States voluntarily reporting their core set and then through administration. By 2011, that information is going to come sort of within a concise report to say here are the gaps, here are the areas where we need more development, we need more measures and so forth.

So again, I'm in this testing mode. I see the legislation says assess the impact, test, and so forth. That is what this initial core set is going to be about. And then moving into when we develop this sort of pediatric quality measures program, the key date in my mind becomes 2013 because now, as we all know, we all know the issues with measures as they stand today, whether or not they are not reliable, valid, and so forth, we know that. But I do not think that Congress knows that, and they do not know in the sense that we have to now begin to flush this out and develop it so now, all States can use this.

So if two States report on day 1 or 20 states report on day 1, I think that is okay in year 1. Year 2 is when we begin to flush this out a little bit more. So if you can keep that in mind, again, we know measures are poor in some senses, and I think that is okay. That is going to be part of the report to say measures are not valid and reliable at this point, but we will begin to build that out as we move forward. So that is it. Thank you.

Rita Mangione-Smith: Okay. So we are going to spend the next 10 to 15—

Jeffrey Schiff: We have a microphone for you if we can—

Rita Mangione-Smith:—minutes. We are trying to fill in these two columns from input around I guess—thank you very much.

Jeffrey Schiff: I think one of the things, and this came up with Cathy's very first question. I think we want to give some time right now sort of as I see it as a pressure release valve for some of these issues around what measures need to be developed or what measures are out there that we have not done so I think what we are going to do is take about 10 or 15 minutes and fill in that list. It will not be your last chance. This list will be up for the whole 2 days. They will be available in the interval in between, but this is our chance to say this is where we want in this report to perhaps say we need more development or whatever measures we are going to be putting forward.

Rita Mangione-Smith: So I would like to propose based on what Marlene offered up, the inpatient measure that you said several States are doing and what we heard, what is stated in the legislation. Unless I hear differently from our colleagues at CMS and Carolyn and Denise, I would like to include some of those measures that may not be being used by Medicaid. We will be going through a Delphi process with this list, and you will have your chance to say "might be valid, not feasible." I have heard some of that around the table in the last 5 minutes from some of the State comments. So you will have the chance to score them in that way if that is your heart. This is not a consensus process; it is a Delphi process. In that way, everybody's input gets taken into account evenly, so I just wanted to reiterate that. But I would like to start kind of hearing from the group and I will—Marlene, if you can state that measure again, I will put it up there.

Marlene Miller: You can just abbreviate it CLABSI, or central line-associated bloodstream infections, which applies to pediatric ICUs [intensive care units] and neonatal ICUs in any setting; CDC-defined definitions.

Jeffrey Schiff: Do you want to put other—I'm just going to ask for clarity—there are others like ventilator-associated pneumonia measures?

Marlene Miller: I would say in this process, there are other measures. The example you give has a lot less agreement on the definition and a lot less put forth in terms of mandating across the States. This one is the one that has no ambiguity, I will say, in the definition and is being put forth by 25 States. So if we are going to start some place, I'm going to start here.

Rita Mangione-Smith: If there are other observed indication measures, any other indication methods that people are aware of that States are—?

Glenn Flores: Yeah. I would suggest ambulatory-sensitive conditions or avoidable hospitalizations which a lot—

Rita Mangione-Smith: [Cross-talking] hospitalization?

Glenn Flores: Yeah.

Rita Mangione-Smith: You do not have to wait until I turn around, people.

Jeffrey Schiff: Glenn, will you add readmissions?

Glenn Flores: Yes, definitely. And there is a whole series of diagnoses where there are some guidelines that already exist, that people agree upon, and some may be used by States, I'm not totally sure but, for example, asthma and the medications a child is receiving on an inpatient basis, some people go as far as length of stay; bronchiolitis is certainly another area; rule out sepsis and length of stay are also interesting issues.

Rita Mangione-Smith: So, I'm sorry. Readmissions and length of stay, is that—?

Glenn Flores: Well, there are a whole [cross-talking]

Rita Mangione-Smith:—sheets here so—yes?

Female Voice: I think looking at specifications that are in the AHRQ PDI (Pediatric Quality Indicators) set for the ambulatory sensitive indicators [cross-talking].

Female Voice: Yeah, that has the readmission stuff in it. The length of stay stuff, right, is very not clear at least in my mind in terms of which conditions have clear criteria—

Female Voice: And it is so system-dependent, too.

Female Voice: Yes.

Rita Mangione-Smith: Well, and also risk adjustment becomes a huge issue in that, too, so—

Female Voice: Yes.

Female Voice: A question on those—because of the issue other than the CLABSI measures, the patient safety component of the AHRQ PDIs, I mean occurrences are thankfully very low, but I know there is a composite pediatric indicator that has been developed and I did not know if that goes in the green column or if anybody is using it, but that might allow us to measure that more reliably if it is a composite because any one of the complications is too rare.

Rita Mangione-Smith: [inaudible]

Female Voice: I would probably offer someone that was involved in helping build those into the measured development. I think the piece of it is not that strong as the reliability of what you identify by administrative data, how much of that is truly preventable. That work particularly in pediatrics needs to be better defined.

Rita Mangione-Smith: So it is a composite safety measure? Am I getting that?

Female Voice: You can say patient safety indicator. Yeah, composite pediatric patient safety indicator, and it is based off administrative data. Are we just calling measures out?

Jeffrey Schiff: Yes.

Rita Mangione-Smith: Yes, you do not have to stick your cards all up.

Female Voice: Okay. I would add with a little bit of hesitation probably into the measure that needs development but again in widespread use is the Joint Commission pediatric asthma measures as mandated for all freestanding children's hospitals. Many other hospitals that have pediatric centers in them are also reporting them. The evidence is not 100 percent, but the last measure in that mandates a home care management plan for asthma so it ties in beautifully to the ambulatory care component of things. And that went into effect two Aprils ago, so April '08 I think.

Rita Mangione-Smith: Is that the right [inaudible] measure?

Female Voice: Yes.

Rita Mangione-Smith: Okay, so [inaudible].

Cathy Caldwell: I would just add a whole basket of measures around NICHQ [National Initiative for Children's Healthcare Quality] in recognition of what some of the State-based folks have been saying about the need to focus on high cost areas and Marlene as well—

Rita Mangione-Smith: Right side or left side?

Cathy Caldwell: I leave that to you all who are more familiar with the validity and reliability of individual measures.

Rita Mangione-Smith: In use measure.

Female Voice: I think you are looking for more detail. You are just saying a bundle of [inaudible] measures and I think there [cross-talking].

Rita Mangione-Smith: We are looking for specific things we can Delphi on as they go here.

Female Voice: The Vermont-Oxford measures. Is that what you are referring to? Vermont-Oxford under, I would, say green.

Female Voice: Yeah, green [inaudible].

Jeffrey Schiff: Cathy?

Female Voice: [inaudible]

Jeffrey Schiff: Oh, thank you. You are more considerate than I am.

Female Voice: One thought was patient safety and quality can be separated. Even though you can kind of separate conceptually some things about patient safety and quality, nonetheless, there is a whole separate activity going on at AHRQ right now concerning good measures for patient safety and it might—which Denise is heading up herself so it might be worth seeing if there is anything coming out of that work. For example, the measure that has been suggested, some things about infections is one patient safety measure we are looking at, and there are some others, some are not so relevant like for falls, but there are two or three, and I'm just suggesting that maybe we pull those out and look at them somewhere along the line. Having said that—

Female Voice: Well, they are not in use necessarily by Medicaid or SCHIP programs [State Children's Health Insurance Program].

Rita Mangione-Smith: And used by others?

Female Voice: Oh sure.

Rita Mangione-Smith: Okay.

Female Voice: Oh yeah. I thought the in use was just constrained to Medicaid and SCHIP.

Rita Mangione-Smith: No. We have opened it up because the legislation says measures in use both in a private and public [cross-talking].

Female Voice: Then I would like to have, and I guess it is on the purple side, sort of collectively or in the aggregate patient reported outcomes. And I think those are not necessarily measures that need to be developed because they—

Rita Mangione-Smith: Specific?

Female Voice: Well, there is the PedsQL [Pediatric Quality of Life Inventory]; there is the asthma quality of life measure from Elizabeth Juniper—I mean there are a gazillion measures of patient reported outcomes or health status, health-related quality of life kinds of measures.

Carolyn Clancy: Are they being used by health care organizations or research groups?

Female Voice: Well, no, there is a lot of use in clinical practice, and I can supply some leads to that if one would want them but not necessarily for Medicaid and SCHIP.

Carolyn Clancy: As long as we know the best detail is there.

Female Voice: Yes.

Rita Mangione-Smith: Cathy e-mailed us the suggestion to include some outcome measures. I do a lot of work at Seattle Children's who are actually implementing PedsQL measurement seemingly there, and so it works well with Jim [indiscernible] and you can correct me if I'm wrong, he told me Florida is actually using it as a routine quality measure—

Female Voice: [inaudible]

Rita Mangione-Smith: The PedsQL measure.

Female Voice: The PedsQL, yeah.

Rita Mangione-Smith: So it is being used even by Medicaid and SCHIP.

Female Voice: But what I would like as a subset are the PROMIS measures because they will be free. The PROMIS is the NIH Patient-Reported Outcomes Measurement Information System. Although, it is focused at the moment more on generic measures and very heavily on adults, there is an effort going on for developing clear measures of pediatric measures in both reliable and valid short forms and in what is known as computer-adaptive testing, which for kids they call kiddy [sounds like]. And because that will be free and in many cases there will be both pediatric measures that probably go down to age 12, maybe even down to age 8 and corresponding parent measures, I think that is a longer term—

Rita Mangione-Smith: For instant PROMIS voters?

Female Voice: No, those measures are quite well-developed. The kids measures are getting there, I would say, but they are busy working on them, so do they need development? I do not know. Some exist already—

Rita Mangione-Smith: Are they used [cross-talking]?

Female Voice: Oh, sure.

Rita Mangione-Smith: During this [inaudible] in pediatrics.

Female Voice: Well, a lot of them will be based on things like what is in the PedsQL or any of these others, particularly because they pulled the item bank—they are developing the item banks. I would say that they are close to being in use, and they do not necessarily need a whole heck of a lot of development.

Rita Mangione-Smith: I'm going to put them—

Female Voice: Okay, put them over there but what I'm trying to convey in part is that they are free to all States to use, and I think in so far as you are concerned with feasibility and cost and administrative burden and that sort of thing, they offer an avenue for use that might be appealing to States.

Jeffrey Schiff: Let's take just a few—

Female Voice: [inaudible]

Jeffrey Schiff: Sure.

Carolyn Clancy: I guess I'm struggling a little bit with the "in use," and it reminds me of testifying recently about health care-associated infections, and someone wanted to know—did it cost anything to use and report to the CDC's systems? And the CDC answer was absolutely not. The hospital's answer is well, yeah, it cost me a couple of FTEs [full-time equivalents] who do not do anything but count that data. So I'm almost thinking we do need a middle column when you were talking about—so maybe some clever use of colors there would be helpful. Not having to pay for the measures and for algorithms and all that is actually very helpful, but you have to remember that States are going to get some of this back in their face.

Cathy Caldwell: Absolutely, but if in fact for a lot of outcome measures you are going to have to pay because they are proprietary, the PROMIS measures per se at least eliminate that cost. It does not eliminate certain administrative and reporting burdens, absolutely not.

But I think it is—talk about passionate, I think really aiming eventually for getting at patient-reported outcomes that come in so far as you can push the reporting down to pretty young ages, over the long run that is the way we should go because neither parents nor providers do a good job of reporting on health status and health-related quality of life of children. I mean that might be one first step, but I just am hoping that over the long run, the outcome part of what you are after with respect to quality of care is high on our list of at least the wish list.

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