Wyndham Metrocenter Hotel
10220 North Metro Parkway
East
Phoenix, Arizona
Hortensia Amaro, Ph.D.
Dr. Sundin Applegate
Lynette Araki
Amy Barnes
Kathryn Coltin
Don Detmer
Jason Goldwater
Dr. Diane Greeneich
Dale C. Hitchcock
Lisa I. Iezzoni,
M.D., M.S.
Dr. Carol Lockhart
Mary Moien
Mary Temm
Betsy
Trombino
George H. Van Amburg
M. Elizabeth Ward
Mary Temm
Betsy Trombino
Dr. Carol Lockhart
Dr.
Diane Greeneich
Dr. Sundin Applegate
DR. IEZZONI: I'd like to get started. This is a visit that the Subcommittee on Population Specific Issues of the National Committee on Vital and Health Statistics is making to the state of Arizona, to learn from you about Medicaid Managed Care, how it's worked for you, and a variety of related issues.
And, again, our focus, since we are the National Committee on Vital and Health Statistics, is on data, and so that will be what we'll be talking mostly about for the next couple of days.
Thank you for those of you who have come. What I'd like to start off with is going around the room and having people introduce themselves, including the two people in the audience. And, why don't we start that way.
I'm Lisa Iezzoni. I'll be chairing this session. I'm at Beth Israel Deaconess Medical Center in Boston, and at Harvard Medical School.
Hortensia.
DR. AMARO: Yes. Hortensia Amaro. I'm a member of the Subcommittee, and I'm a faculty member at Boston University School of Public Health.
MS. WARD: I'm Elizabeth Ward from the Washington State Department of Health.
MS. ARAKI: I'm Lynette Araki from the National Committee on Vital and Health Statistics.
MS. TEMM: I'm Mary Temm with Temm & Associates, a consulting firm based here in Phoenix.
MS. MOIEN: I'm Mary Moien working with Lisboa, a contractor.
MR. HITCHCOCK: I'm Dale Hitchcock. I'm a staff member to the Subcommittee. I'm from Office of Assistant Secretary for Planning and Evaluation. We have a data policy group, and I staff that, as well.
MR. VAN AMBURG: I'm George Van Amburg from Michigan Public Health Institute.
MS. IEZZONI: Great. Amy.
MS. BARNES: I'm Amy Barnes from the National Center for Health Systems.
MS. IEZZONI: Okay.
MR. HALL: My name is Donnie Hall, I'm the principal and CEO for Health Systems Consulting, a consulting firm based here in Phoenix doing mainly Medicaid Managed Care.
MS. IEZZONI: Great. And, Jason.
MR. GOLDWATER: I'm Jason Goldwater, and I'm also a staff member of the Subcommittee.
MS. IEZZONI: Okay. And I'd like to actually just start by thanking Jason. Jason Goldwater and Carolyn Rimes, from the Health Care Financing Administration, worked very, very hard to put together this meeting for us, and they also put together a nice packet of reading materials that, hopefully, all the subcommittee members would have an opportunity to review.
Okay. This morning, Mary, I guess we're going to hear from you. And, so, why don't you start.
MS. TEMM: Okay. Well, first I have to tell you that the Chamber of Commerce here in Phoenix wanted me to apologize for the weather. This is probably the worst weather we've had all winter long. So, unfortunately, you're not seeing the 70 degrees, blue sky, normal Phoenix, sunny Arizona kind of atmosphere here. So, I heard a few of you talking, and I hope you didn't have too many problems flying in, because we're not used to having bad weather, so when we have a little precipitation, planes just don't know quite how to stop in the airport, so I have to apologize for that.
(Whereupon, Betsy Trombino enters the room.)
MR. TEMM: I wanted to give you just a little bit of background about myself. I've been in the managed care industry for about 13 years, and most of it has been involved here in Arizona with our Arizona Medicaid Program, AHCCCS, Arizona Heath Care Cost Containment. I'll try and remember to refer to it as our Arizona Medicaid agency and not AHCCCS, because it gets a little confusing for people if they're not familiar with the program.
I've worked throughout the years with a variety of the health plans. I started my consulting firm about five years ago. We're a small firm. We do a lot of work with the health plans here in Arizona, as well as other Medicaid Managed Care entities throughout the country. I do a lot of work over in California with their new two-plan model, and all the various counties that are there.
Specifically, today, I will address the Arizona model, and the data issues related to it. In particular, I'll let you know that I've been involved in both the acute and the long-term care programs here in Arizona, and they are actually two separate programs. The AHCCCS Program is the acute Medicaid Managed Care Program, and ALTCS, or the Arizona Long-Term Care System, is a long-term care Medicaid Managed Care Program.
On the acute side, I'm going to address a lot of the issues related to one of the most recent, I shouldn't say most recent, but a recent health plan entity to the AHCCCS Program, which is CIGNA's Medicaid Managed Care. CIGNA has a large commercial presence here in Arizona, and became a Medicaid Program three years ago.
In addition, I'll also talk about some of the rural and small health plans that I've been involved with, mainly on the long-term care side. I've worked with two of the counties, Cochise County, which is in the southeastern part of the state, and then Yavapai County, which is a little bit further north from here, where, actually, instead of the rain, they've got the snow.
And I wanted to kind of point that out, because I think there are varying issues between the health plans and the data that's been available and supplied either from the State or from the plans, it varies a little bit by program, and then also, it has a different impact, depending on which program you're really looking at, and the type of health plan, whether that's some of the large commercial plans, or some of the very small rural health plans.
To give you a little bit of perspective of the size of the plans, in our long-term care program, Cochise County has less than 500 lives in their program. The Yavapai County has just over 500 lives. CIGNA, when they initially started, had 34,000 lives in their acute plan and, actually, today, they're over 40,000.
So we have a little variance of size health plans that have only 500 members, and some of the administrative burdens that encounter -- submission really has on that, and then some of the larger health plans, which is almost business as normal, it's not a big deal for them.
I received a copy of the questions that basically the panel wanted to go through; and, basically, I've kind of gone through and put together a narrative on some of the questions. Not all of them are really applicable to the business that I'm involved in, nor with some of the health funds that I'm involved with. But I will try and address the major issues and points from each of the questions.
Basically within the realm of the program development, one of the most important issues that the health funds are faced with, is what type of data is available to assist them in determining the feasibility of entering into their Medicaid arena. As with any new venture, potential new programs need to have access to a variety of data. The data has to be reliable, accurate, and in a format which can be manipulated for any of the analytical purposes.
The data presented should be in an industry standard format. Although the Arizona Medicaid Program makes available encounter data to all potential new health plans and any existing health plans, there's been a number of flaws in the data that's been presented.
First, the main flaw that's presented in the data is, it's really not an accurate picture of the current program and the activities that are going on in the program. The health funds are required to submit encounters, but, basically, the health plans have up to 240 days after the end of the month of the date of service. So the encounter data is relatively old when it's actually submitted to AHCCCS, to start with.
Then, coupled with that, their ability to roll the data together for all the health plan, and, really, the data becomes one to two years old. This makes it really difficult to analyze the data, in comparison to the current trend of what's really going on in the program.
The second problem with the data is really its accuracy. Again, the State is really at the mercy of the health plans, as far as the data that's being submitted to it. The data that's been released has had a number of errors throughout the years. The most recent competitive bid was conducted last year. A prime example of some of the errors, we had OB services listed for male populations. So, those are some of the problems that, when you're looking at the data, you have to be able to make some adjustments for the accuracy, and really view the data with somewhat of a slanted view.
The third issue with the data is, really, it's not complete. If you look at the most recent data that was supplied by AHCCCS in conjunction with its bid, it didn't give you a complete picture of the utilization. Basically, you needed to make some completion factor adjustments to the data to really make it something that you could use and have any reliability on.
And although I've cited a number of problems with the encounter data here in Arizona, I do want to stress that in comparison to the data that I've seen for other states, Medicaid Managed Care Programs, it's been stellar. So, Arizona has come a long way in the years that it's been operating its Medicaid Managed Care Program, but it's still not what everyone would like to see.
As Medicaid Managed Care expands coverage to larger populations, the availability of data becomes even more important. The potential risk bearing entities are dependent upon the data frequently supplied by the Medicaid oversight agencies. The data needs to be reflective of the population to be covered by the Medicaid Program.
In Arizona, all the health plans and the acute and long-term Medicaid Programs are required to submit encounter data to the State; and, basically, it's broken down into two types of encounter data:
HICFA 1500 data, which basically is reporting each physician visit, nursing visit, surgical procedure, and anesthesia service, lab, x-ray, dental, and home community-based services, as well as therapy, DME, supplies, and transportation.
And then the second type is really the UB-92 type data, which would be any of the inpatient hospital admissions, outpatient hospital or dialysis services, and institutional services, such as nursing home visits.
In reporting the encounters, the health plans gather the data and sort it by category of service, eligibility type, and date of service. The data is also analyzed by age of the recipients. The data is analyzed and used by the plans to evaluate the quality of care and cost containment performance of its own subcontracted providers.
The long-term care program, they also will look at the data regarding the placement of the recipients, whether this is an institutionalized member, or a home community-based member. More sophisticated health plans are also analyzing the data based upon diagnoses. All the Arizona Medicaid Programs are also required to conduct member satisfaction surveys, which are also looked at in conjunction with the encounter data.
Commercial health plans which have entered the Medicaid market here, such as CIGNA, have found that they make really minor changes in the type of data that they're collecting. The biggest change for the health plan is actually the submission of the data to an oversight agency. The type of data required is only slightly different from what the health plans were collecting currently within their commercial arenas.
Due to the vast differences, however, between their commercial and Medicaid populations, the utilization patterns, really, there's no comparison between commercial and the Medicaid. So what they found is, it's really not a bonus to them to have a commercial population to be able to compare it to their Medicaid population. What's more useful is really to compare between the Medicaid Programs. They'll look and do their comparisons from health plan to health plan.
The health plans are required to follow the definitions and contractual requirements for data collection stipulated by AHCCCS. The health plans are welcome to expand their own data collection efforts, which some plans do. The main element with the health plans do capture and analyze, which is not reported to AHCCCS at this time, is the pharmacy utilization data. Years ago, the pharmacy data was submitted as a third type of encounter, but due to the volume of the encounters, basically, it was stopped by AHCCCS. So, pharmacies are really -- that data is really utilized and analyzed at the health plans, but not at the AHCCCS level.
Outcomes of care for Medicaid Managed Care beneficiaries is currently being explored by a number of the larger health plans; however, the smaller health plans are really lacking the information systems they need to be able to conduct the types of analyses required. Some of the smaller plans are developing, really, analyses that they can handle, primary care data analysis, they're looking for utilization trends with their data, they're looking for under and over-utilization of referral and specialty services, and they're also rolling in their pharmacy services.
The most difficult part of collecting and analyzing the data by these Medicaid Managed Care Programs, is really the logistical problems caused by the ever increasing contractual hierarchy. As health plans subcontract with IPAs and PHOs and other provider sponsored organizations, it's really developed a multiple layer of data collection and analysis.
A case in point. A PHO may require its members to submit its data, encounter data to a central processing point. The PHO, in turn, will submit the encounter data from its central processing point to the Medicaid health plan. The health plan, in turn, submits the encounter data to the Medicaid oversight agency. Needless to say, the cost of processing the same encounter data by these multiple layers of administration is enormous. And the cost of the information systems that are required to be able to do this data collection and analysis is also very expensive.
Direct submission by the rendering provider to the Medicaid oversight agency would drastically reduce these processing expenses. However, the contracting entities still need to have the data.
What I'd personally like to see is a system developed that would allow for the flow of the data directly from the rendering providers directly into the oversight agency, while at the same time allowing other entities, such as the health plans, or other contractual entities who have a right to the data to be able to pull the data down.
The process, of course, would raise a number of confidentiality issues. The process would require safeguarding the information to ensure only authorized entities have access to the data, and only the data which is applicable to them.
Once the data's been collected, the data is currently sorted and analyzed by category of service, by eligibility type, by age category, and by dates of service. The data is usually analyzed utilizing standard utilization terms, basically, looking at the number of units rendered per thousand Medicaid beneficiaries.
Within the Arizona Medicaid system, sanctions have been imposed upon the health plans for timeliness, correctness, and omission of data based upon the results of encounter validation studies. AHCCCS will conduct the validation studies based upon a sample of a health plans encounter data. If the health plan does not submit the requested medical records related to these encounters within 90 days to AHCCCS, the health plan can be sanctioned up to $1,000 per missing medical record.
The results of the validation studies are extrapolated to the population of encounters. A health plan can be sanctioned $1 per encounter for timeliness of the encounter, $1 per encounter for correctness, and 5 to $10 per encounter for omission of the encounter data. In addition, if the health plan submits an encounter to the State and it is pended due to incompleteness, again, the health plan can be sanctioned up to $5 per encounter while the encounter remains in a pended status beyond 100 days with the State.
The majority of the health plans pass along the sanctions along to their contracted providers. If the sanctions are a result of an individual rendering provider's failure to submit timely, complete, and accurate encounters to the health plan, the sanction is then allocated to the individual provider from the health plan. The sanctions which have been levied by the State throughout the years have been significant. I believe the largest in a given example was over a hundred and fifty thousand dollars to one health plan.
I think the assessment of sanctions has drastically helped with the noncompliance issues of encounters. In the beginning years of the program, there was quite a bit of noncompliance, either encounters were not being submitted, or difficulties were incurred with their inaccuracies or incompleteness. I think the sanctions have drastically increased the reliability of the encounter data.
The problem, however, with the sanctioning is, the monitoring does not occur on a timely basis. I believe to really enforce the sufficient requirements, the monitoring has to be in a much more timely basis. Currently, the validation studies are performed on encounter data which may be up to two years old, so it may not reflect what the current trends are with the health plans.
I would recommend to the Subcommittee that for the collection and reporting of information on Medicaid Managed Care, that a standardized data collection and reporting system really be established. If standards could be developed in concert with the information systems that are actually in the community right now, the process could be simplified. Most information systems currently on the market do not address Medicaid Managed Care needs, and I can't stress that enough.
What's happened is, most information systems that are available in managed care are relation -- really relate to commercial managed care entities. They don't take into consideration the nuances of a Medicaid Managed Care Program. What's happened is, basically, there are very few systems that are able to accommodate, really, the collection, processing, and submission of encounter data. The systems are great, as far as being able to accept claims, and do claims processing, but the difference between claims and encounters is enormous in the managed care industry, and especially in the Medicaid Managed Care industry.
In Arizona, the small rural health plans involved in both the acute and long-term portions of the Medicaid Program have contributed greatly to, actually, the success of the program. The small health plans really lack the expertise and resources needed to develop sophisticated information systems on their own. Their fates lie with the limited number of vendors who can accommodate the Arizona specific requirements for data collection.
If Medicaid Managed Care data collection and reporting could be standardized across the nation, more information system vendors may be able to accommodate the requirements and, therefore, it may be a real win for the smaller, especially the rural health planners.
The standardization of data collection and reporting, needless to say, would be a very difficult task to accomplish. Since there's over 50 Medicaid Programs in existence, it would require a great deal of coordination and change on the part of the Medicaid Programs and their contractors.
One of the items, in particular, that I've noticed throughout the states is, each state's specific procedure code that they've developed utilizing their own home-grown HCFA codes, what's happened is, the same codes are used in differing states and mean completely different things. If we could adopt a uniform set of procedure codes that would require standardized data collection and reporting, I think it would be a great plus for all the programs.
(Whereupon, Don Detmer enters the room.)
MS. TEMM: The Subcommittee will also need to take into consideration the differences between commercially licensed HMOs entering the Medicaid Program, and HMOs developed specifically to serve the Medicaid population.
As I mentioned earlier, the commercial HMOs will have information systems which support their current lines of business. These information systems may need to be modified to support the Medicaid line of business. It may not be easily modifiable. This could actually cause commercial HMOs to either develop new systems, which would be a duplication of their existing systems, or expend large resources to accommodate the Medicaid Managed Care Program. This could be seen as a large barrier for HMOs to enter into the Medicaid Managed Care arena. Depending on one's viewpoint, that could be a good thing, or that could be a bad thing.
The Medicaid specific HMOs may lack the resources to accommodate a lot of changes in information systems. The example, here in Arizona, some of these small plans that have 500 to even 2,000 lives, they lack the resources they would need to be able to really accommodate major changes in their information systems.
It could also be a barrier, and it could really preclude Medicaid specific health plans being developed in other states, and actually duplicating some of the efforts that have gone on here with some of the small rural health plans. They've been a great part of the success of the Arizona model, and we're hoping that other states will take a look at that, and some of the small rural health providers will take that into account in developing their own programs.
The major concern I have about data reporting for Medicaid Managed Care continues to be the timeliness and the accuracy of the data, and the duplicity of encounter processing. The data collection process needs to be streamlined to improve the reliability of the data, while at the same time reduce the time and administrative expenses related to the collection.
If the data could be reported directly from the rendering providers somehow into a data repository, with appropriate access afforded to oversight entities, whether those oversight entities are really provider groups, health plans, or the Medicaid agencies, while at the same time safeguarding the confidentiality of the beneficiaries, it would really be a process that could drastically improve the encounter collection and data collection.
Future data collection, analysis, and evaluation activities will continue to serve what I view as really three managerial purposes: Really, to analyze the health care services that are utilized, and evaluate the quality of health care and cost containment measures; also to evaluate the providers' performances; and, third, to develop and evaluate proposed capitation and reimbursement rates for contract awards, which is probably the largest area.
The timeliness and accuracy of the data is critical in each of these steps. Timeliness and accuracy are assessed, and the data is massaged to really account for these potential problems. And, again, my examples of what's happened here in Arizona with our latest competitive bid, the data that was supplied to the potential contractors had to be massaged for timeliness, for accuracy, and for omissions.
While the increased effort and interest in Medicaid reform involving managed care programs, data collection and reporting becomes extremely important. As new programs are developed, it's going to be imperative that data systems are in place which allow for the analysis of the data for the Medicaid Managed Care. Thank you.
MS. IEZZONI: Thank you, Ms. Temm, that was a very thoughtful presentation.
MS. TEMM: Thank you.
MS. IEZZONI: A lot of excellent information in there.
MS. IEZZONI: Let me just go around and see whether the Subcommittee members have some questions.
Elizabeth.
MS. WARD: Yes, thank you. The succinct quality, as I'm beginning to see through the fog to at least some recommendations for some solutions, is really helpful.
We've had some other testimony particularly related to race and ethnicity data collection, and its difficulties. And it's still being -- appears to be, for many states, a way of -- that that's a subset of analysis that still needs to go ahead, because we're still -- quality of care still seems to be discriminated in many instances, along those lines.
Have you got any comments in that area about the difficulties with that, the eligibility on some -- we've heard from some people that the race and ethnicity is collected the most accurately in sort of enrollment, you don't want to do it at the time the care is provided because of the feelings of discrimination, but how do you match what's been done to an enrollment file, anything that you could, from your perspective, give us?
MS. TEMM: I think what I've seen happen on some of the sophisticated health plans exactly what you've alluded to, at the enrollment, on the member's side of their system, they've collected the data, and trying to merge that into the encounter information has been very difficult, because it's really merging two different sets of data, utilization data versus, really, the eligibility or enrollment data.
I think the difficult part, is there aren't many systems, information systems out there that accommodate that. And, again, you're correct. I think the time that you need to do that is really in a vacuum when you're analyzing the data. And to be able to basically hit those two files up against each other and sort of add the additional demographic information about the member related to a data set, I think that it's very important and, unfortunately, again, I think it's -- because we really don't have information systems out there that accommodate that, especially in the Medicaid Managed Care arena.
I think there are some commercial programs in managed care that are now starting to do that a little bit more, but Medicaid Managed Care information systems, I think that's lacking.
MS. IEZZONI: Can I just follow up on that? One of the things that we read in the background materials that we had about Arizona, was that you have a significant Spanish speaking population, and you don't necessarily have an equally significant population of Spanish speaking providers.
MS. TEMM: Correct.
MS. IEZZONI: And so, therefore, you have many patients who may not be able to communicate as effectively with their clinicians as might be good. And one of the things that I wanted to hear about was how you track that, how you track the kind of cultural sensitivity to patients, the ability to linguistically communicate around their care, as part of your oversight of quality of care in Arizona.
Do you have any comments on that?
MS. TEMM: I think that I can speak for the health plans I've been involved with. Most of them will survey their providers at the time they're contracted, and then on an annual basis to make sure they have updated information related to the language that's spoken in their office.
We're trying to do kind of a dual profiling, both their providers and their members. Most of the information systems that the health plans are utilizing right now allows for languages to be tracked related to the specific providers. The health plans also produce directories that will identify for the members specific providers who, at least they'll be able to speak the same language, to get away from some of those language barriers.
But the difficult part, again, is on the member's side, the systems that are in place today, it may track that information, but we're having a difficult time in merging the data sets together. So, again, it's hard to link the appropriate member with the appropriate provider, while at the same time allowing the member their own freedom of choice.
What's happened, actually, with some of the smaller plans, which it's an advantage to being so small. When we're talking four and five hundred lives on the long-term care side, there's also case management that's involved, so there is a one-to-one relationship between the member and the health plan, and that's been very helpful for really eliminating a lot of those problems.
So we are aligning the members with the appropriate providers. But, systematically, it's something that's absolutely lacking here, I think, in most of the information systems that are being utilized.
DR. AMARO: So, is that the case for any information collected at enrollment, in terms of connecting it to encounter data?
MS. TEMM: Um-hum.
DR. AMARO: So, most of the demographic information, this has been asked repeated at encounter? For example, you mentioned that the analyses are often done by age categories.
MS. TEMM: Correct.
DR. AMARO: So then that's collected -- that's possible because it's collected again at each encounter.
MS. TEMM: Correct.
DR. AMARO: But race and ethnicity questions are not.
MS. TEMM: Okay.
MS. AMARO: Okay. In our background materials, we did read a couple of published articles that seemed to indicate some differences in after care between Hispanics and non-Hispanics so the data didn't come, those datas didn't come from -- well, similar analyses wouldn't be possible, is that right, with the data systems?
MS. TEMM: Correct.
DR. AMARO: Okay.
MS. TEMM: Correct. I think most of that information was really done through surveys, in other surveys.
MS. IEZZONI: Okay. George.
MR. VAN AMBURG: What triggers all of the data from the plan?
MS. TEMM: From AHCCCS' perspective?
MR. VAN AMBURG: Um-hum.
MS. TEMM: They're actually scheduled on an annual basis, but, again, they're looking really at data that's two years old. So each health plan is aware that their data will be up for a validation study -- I should say a health plan that's been in existence at least one year, because they do need to have the data collected.
Basically, they go through and do a sampling based on the enrollment information, make a small sampling, provide those names to the health plan, request the medical records. From there, the health plans are providing all medical records related to that member back to AHCCCS. Then what they're doing is actually looking at the medical records first with the encounter data.
So, basically, for every encounter, that should be listed in the medical record. There should be a corresponding encounter submitted to AHCCCS through the health plan, again in checking for timeliness, for accuracy, and for potential omissions.
MR. VAN AMBURG: Who counts the records on the audit, and what happens when there's discrepancies in the coding?
MS. TEMM: Actually, the audits are performed by the AHCCCS staff, and the health plans are presented with the results, and able to really give a rebuttal. So there is somewhat of a collaborative effort between AHCCCS and the health plans.
MR. VAN AMBURG: You said in your comments that the commercial population data was not comparable to the Medicaid data. Why?
MS. TEMM: Basically, because of the utilization trends, because the populations are just so different in the way they're accessing care, and the amount of care that they're utilizing.
MR. VAN AMBURG: Well, that's probably the most important thing. So, why can't you take a commercial plan that has both Medicaid and private pay, and compare the utilization and the outcomes?
MS. TEMM: Actually, CIGNA is doing that, however, they've really found that they're getting no bank for their buck by analyzing the data versus other health plans, because the commercial population -- the outcome measures -- yes, they are utilizing their own commercial population versus their Medicaid population. But on utilization statistics and patterns, they're really looking at a comparison with other health plans.
MR. VAN AMBURG: Okay. Now, the data collection you talked about was really just the AHCCCS data, not the long-term care data, the process -- is there a similar process in long-term care?
MS. TEMM: It's the exact same process.
MR. VAN AMBURG: Okay. And they go through the same type of cycle and audits, and --
MS. TEMM: Correct.
MR. VAN AMBURG: -- is the quality as equally poor?
MS. TEMM: Actually, the long-term care program, the sanctions have been minimal, at best, and I think probably because the -- the programs are so small, that they're able to really have a handle on the account information. There have not been, to the best of my knowledge, many sanctions at all on the long-term care development.
MR. VAN AMBURG: You indicated in your comments throughout, and I think you get the impression that establishing a high quality continuous encounter data system is going to be very expensive and very difficult.
MS. TEMM: Um-hum.
MR. VAN AMBURG: Okay. Do you think you need an encounter data system, and if so, why?
MS. TEMM: I think, definitely, you need to have one, and basically for a lot of the reasons that I thought of. One, in particular, is for rate setting; and, two, is really for the quality and performance measures for the individual providers.
The encounter data has been, I think, very helpful for, it's a single piece of data that can be used by multiple entities for multiple reasons. It can be utilized by the individual health plan for monitoring its own providers in looking at quality of care, but then it's also a good measure for the oversight agencies to also look at what's happening in relationship to that health plan in total.
MR. VAN AMBURG: Why can't you do that on a sampling basis?
MS. TEMM: I assume you could, but based on what we've done throughout the states, and the capitation, in particular, I find it very difficult to really extrapolate the data and --
MR. VAN AMBURG: I'm particularly interested in the outcome measures, not in the utilization process. When you start looking at data and matching data sets --
MS. TEMM: Um-hum.
MR. VAN AMBURG: -- for outcomes, which you indicated was a real problem --
MS. TEMM: Um-hum.
MR. VAN AMBURG: -- why can't you do that on a sampling basis?
MS. TEMM: The reason it's been a problem here, is mainly because of the information systems that the health plans are currently using, that they're not able to really do that sort of matching, in particular, the smaller plans, and the long-term care plans. They just don't have the sophistication to do it.
MR. VAN AMBURG: And there's no matching to, like the mortality system, to look at age-specific mortality versus diagnoses, in the plans?
MS. TEMM: Not currently.
MR. VAN AMBURG: Are there any plans to do that?
MS. TEMM: I think some of the health plans are looking at it on their own, but on a statewide basis, I don't think there's any plans.
MS. IEZZONI: I -- can I just welcome Don Detmer, who's the chair of the full National Committee. Don, do you have any comments you'd like to add?
MR. DETMER: Not yet, except that I apologize. I was circling looking at you here, but --
MS. IEZZONI: Yeah, we've already talked about --
MR. DETMER: -- but I finally made it.
MS. IEZZONI: -- the rain and travel in Phoenix.
Lynette, you had a comment?
MS. ARAKI: Yes. I was interested where you said earlier that -- and I think it might sort of be related a little bit to George's question.
Can you address your reference to home-grown HCFAs? I mean, why are they -- why is there different uses for -- or, I mean, why have they created different kinds of procedures, classification, I mean, instead of using the standard one?
MS. TEMM: I'll give you an example. Here in Arizona on HCFAs, there's always a range of HCFAs that are basically, if you'll notice when you look them up, they'll say they can be state defined. And what's happening is, the states are defining those differently.
Here in Arizona, for a non-emergent transportation, HCFA codes are being utilized, and they're all starting with "A." In California, that same HCFA code can be something totally different. It could mean a home and community-based type service.
So what's difficult is, if you're trying to look at and analyze data at a procedure code level, the same data may be completely different things from state to state.
MS. ARAKI: Okay. Not within the state, but you're talking about interstates.
MS. TEMM: Right. Right.
MS. IEZZONI: Yeah, George, do you want to comment?
MR. VAN AMBURG: And I think, also, the states have developed their own HCFAs based on what they're reimbursed --
MS. ARAKI: Oh.
MR. VAN AMBURG: -- originally, and that's where it really got started.
DR. AMARO: Oh, that's what the -- origination of why we did that?
MS. IEZZONI: Can I just follow up on that, Ms. Temm? I think that you'll find a sympathetic ear around the table about your plea to try to systematize and make all the codings equivalent nationally. But, given your experience in multiple states, what do you think are the political and other impediments to trying to do that?
MS. TEMM: I think probably the biggest is going to be once we'd make changes like that, again, you've got contracts at the state levels with their own subcontracting entities that are going to have to be changed. And, potentially, it could be massive changes in information systems, because a code that means one thing today, would mean something else tomorrow.
MS. IEZZONI: Um-hum.
MS. TEMM: And the reimbursement schemes would also have to be adjusted.
MS. IEZZONI: So is there a carrot that you would suggest one could hold out to places to try to get them to go to a more systematic way of coding?
MS. TEMM: I think it depends on who the potential players may be. If you're talking about entities that could be involved in multiple states, I think there's definitely a carrot that they could make the changes and it would be uniform across all states they're involved with. If it's, you know, smaller plans that are only in one specific state, you probably don't have any incentive for them.
MS. IEZZONI: Yeah, I was stressed on your discussion of these plans that have four and five hundred members.
MS. TEMM: Um-hum.
MS. IEZZONI: And the value of that, in terms of being able to customize things like matching linguistically the patients with their own care providers.
But, can you talk a little bit more, maybe, about the information system duplications, or those very, very small, small companies. I mean, how do they manage to set up systems to report to the State?
MS. TEMM: Actually, it's very interesting. There's, I believe, I'm trying to find it, three to four health plans that are utilizing the same information system vendor. There's also, in Arizona, home-grown providers. We basically develop the system to accommodate the AHCCCS specific world. And, fortunately, he's made it very attractive for the small plans. They wait for the system on a monthly basis from anywhere between 25 to $3500 a month, which is very affordable for them.
MS. IEZZONI: Um-hum.
MS. TEMM: For them to go out and purchase a system for, you know, $200,000, it's preclusant, these plans are that small. So it's been a real plus that there is a vendor here, however, there's only vendor. There used to be a few, and through the course of the years they've disappeared, and now there's only one vendor who's really working with these small health plans.
So if we made changes, you know, went to really a national coding system, for example, it would impact him significantly, and it would also impact the health plans, from the fact that if it costs him a great deal of money to re-devise his system, the impact's going to bear on them, as well.
The unfortunate part is, the small rural health plans here in Arizona have been such a part of the success of the whole program. A lot of them are basically provider owned and operated, and they've been very successful at managing the services within their own areas. They've got high quality of care, the recipients, they're very bonded to these health plans, they happen to disappear and be absorbed into some larger systems, would definitely, I think, have an impact on them.
So, it's difficult to talk about making major changes but, at the same time, keeping in mind these small entities and wanting to protect them for their own survival.
MS. IEZZONI: Great. George.
MR. VAN AMBURG: You mentioned that the collection and processing costs are rather high, which one would expect. What I'm interested in is, what is the ratio of processing costs and -- I mean, how many health service researchers, statisticians does AHCCCS have in looking at the data, compared to how many just processing it, how much it costs?
MS. TEMM: You probably need to save that question for tomorrow when you talk to the AHCCCS staff, because I really don't know how many have been employed.
MR. VAN AMBURG: Um-hum.
MS. TEMM: I can tell you that from the health plan's perspective, some of the larger plans, the CIGNAs, Arizona Physicians IPA, which I do know are speaking tomorrow, they have their own statisticians, but the smaller plan will actually contract that out. And I do a lot of that work with some of the smaller health plans when they are re-bidding their contracts.
So, fortunately for them, there are quite a few consultants in the Arizona area who have AHCCCS/Medicaid experience, who are able to look at the data and help them get through it. But, again, that's an expense for them to bear, you know.
MR. VAN AMBURG: Can you give me an example of the types of analysis you might do for a plan related to quality care?
MS. TEMM: Most of the quality phase that we've worked on really relates to the over and under-utilization. We've tried to develop bench marks within the plan, itself, because we found it's very difficult even to establish bench marks for an AHCCCS population in general, because it will vary from county-to-county, and from plan-to-plan.
So we try to work with them on developing their own bench marks, and then analyzing the data as far as over and under-utilization on provider-specific levels.
MS. IEZZONI: Hortensia.
DR. AMARO: Can you just tell us a little bit about how the satisfaction survey data are utilized, what kind of analysis you do?
MS. TEMM: The member satisfaction surveys are actually a requirement through AHCCCS that, on an annual basis, the health plans conduct those. And most of the information is going through their quality management programs, and somehow rolled into their quality programs. It's a little difficult to tell you right up front what they're doing, because each plan does something a little bit differently with each of their member satisfaction surveys.
Some of the plans, for example, will roll the data into their credentialing, per se, of each of their providers. When they're looking at their providers on an annual basis, they're looking at the quality that they perceive based on the data that they have in hand, really, through encounters. And, also, the satisfaction that the members are perceiving.
In addition, there are other provider types of satisfaction surveys that are also going on. They're also looking at the providers in relationship to their access and availability of services.
DR. AMARO: Are there specific criteria for satisfaction? I mean, you know, what's acceptable, is 70 percent good enough, you know, or -- I mean, how is that judged, is one question?
And the other one is, is that a place where there could be analysis of the satisfaction of different sectors of the population, especially the populations we might be most interested in?
MS. TEMM: Um-hum. That is data that is collected. Depending on how the health plan has established their survey. It's not a standard survey across all the health plan. Each health plan is allowed to devise their own survey, so that's the difficult part. Some of them are very sophisticated, others are very simplistic. There is no standards as far as --
DR. AMARO: So there's no standard surveys.
MS. TEMM: No.
DR. AMARO: No criteria.
MS. TEMM: Correct.
DR. AMARO: And they may or may not collect information on the survey on gender, race, ethnicity, age, disability status, so they may or may not be able to have a capacity to do those analyses.
MS. TEMM: Correct. Although, keep in mind that the health plan would have that information based on the enrollment --
DR. AMARO: But are they able to link that, because we heard before that they couldn't link the others?
MS. TEMM: On the surveys, I would -- well, it depends. On some of the health plans they're actually encoding surveys before they're out, so they know --
DR. AMARO: Okay.
MS. TEMM: -- the race and ethnicity of the member before they're actually sent.
DR. AMARO: So there would be some --
MS. TEMM: So they are able to do that.
DR. AMARO: Okay. And, moving to a different topic, I'm very interested in the behavioral services, specifically, mental health and substance abuse, and that's my area, and a variety of analysis and, you know, how those are tracked.
Is there specific attention given to them, in terms of access, and quality, and utilization, number one? And, two, whether there's any attempt to look at the relationship of those things that I just named to cost on the other medical-related areas?
MS. TEMM: Behavioral health is a very interesting phenomena here. Depending on the category of eligibility of the member, and depending upon the age of the member, it varies who's responsible for behavioral health.
If a categorically eligible individual is under the age of 18, they're basically a carve-out for the health plan. Those are actually going through the Arizona Department of Health Services, and it's actually through their subcontracted delivery system that services are rendered. Now, there is data coming back from those entities into the program, but, again, we're getting sort of removed from the health plan delivering the services, themselves.
If the member is between 18 and 21 years old and they're categorical, the health services -- or, excuse me, the mental health services are actually being delivered by the health plans. And then for the aged, 65 and over, they are the responsibility of the health plan.
So, it's depending on what population did -- and, again, and these are all non-seriously mentally ill. If they're seriously mentally ill, they're also ADHS's responsibility.
DR. AMARO: What happened to the 22 to 64?
MS. TEMM: They're not covered.
DR. AMARO: They're not covered, oh.
MS. IEZZONI: They're all healthy.
MS. TEMM: So, the difficult part is obtaining that data and, actually, again, being able to do some analysis. Most of the health plans are not really looking at that, currently.
DR. AMARO: Okay.
MS. IEZZONI: Did you want to follow up on that, Hortensia?
DR. AMARO: No, go ahead.
MS. IEZZONI: George.
MR. VAN AMBURG: On a slightly different subject, is there any -- has there been any analysis, or studies, or contact with people that don't have an encounter system but are enrolled?
MS. TEMM: I'm sorry, could you repeat that?
MR. VAN AMBURG: People that are enrolled in the system, but don't have a medical care encounter, is there some follow back to them to see what's going on?
MS. TEMM: From a health plan's perspective, I know the health plans monitor it for under-utilization. I can't really speak at the AHCCCS level, because I don't think they'll actually look at that level of service. They're looking more at the health plan in total, the level of services, do they appear to be appropriate. I don't believe they look at it on an individual basis. But, I can say that most of the health plans are looking at it.
MR. VAN AMBURG: Okay.
MS. IEZZONI: Let me enter the global question. You said earlier that there are problems, like you've got men in obstetrical categories, and --
MS. TEMM: Yes.
MS. IEZZONI: -- there are problems that you also said that you thought that the Arizona data systems for Medicaid Managed Care were light years beyond those other states, other systems that you've seen.
Can you tell us a little bit why you think Arizona has been successful, and what are the attributes that you're speaking about when you say that Arizona is far ahead of other groups.
MS. TEMM: I think it's a variety of things. One, it's time. It's taken a long time to get where we are today. Even though the data may not be perfect, it's a lot better than it was 12 years ago. I think, through the course of time, I think the imposing the sanctions, although it's really been negative towards the health plans, but it's been a way to incentives and to get the data into the system.
I think the other things that have happened is, AHCCCS started their PMMIS system, gosh, I'm searching here for a date, a few years back, and I think the new system accommodated the acceptance of the encounters. With that, I think the biggest flux has been there's always been edits on the data coming in to AHCCCs from the health plans.
I found in other states that the data, once there's a testing process, a tape is initially submitted by a health plan, it runs through all the edits. The data on an ongoing basis is not edited. So, what's happening is, it becomes a data dump for the encounters.
Here, I can say at least it's going through some edits, clearly not enough, since we have males to living babies, but if we could -- you know, if I could stress that they are editing the data, so it's stopping the data from being accepted into the ultimate repository. So what would happen is, basically, they talked dependent encounters. An encounter would be submitted by a health plan, it's hitting the edit, and it's not being accepted. So it would appear on a pended tape back to the health plan.
The health plans are responsible to look at that data, AHCCCS will report what the edits are that it's hit, and then health plans can go back in and see if it's something -- it's an error on their part; did they submit the wrong diagnosis code related to the procedure code, what the problem is, and they can resolve the issue and then pass a corrected encounter back to the State. They have 100 days to do that process before any sanctions are imposed.
They also have the capability if, in fact, the encounter was merely an error, they can delete the encounter, although that clearly is not what AHCCCS would like to see happen because, basically, if you're deleting this encounter, something has happened, there has been an encounter, a medical service has been rendered, so it should be reported.
I think the edits, themselves, have been probably one of the biggest pluses, as far as getting the encounter data, and I think that's helped a great deal with the integrity of the data. We're still not there, and there's probably still additional audits that need to be billed, but at least the data that's coming in is being reviewed for accuracy and reasonableness before it's being accepted into the data repository.
MS. IEZZONI: And, finally, thinking about the future, have you heard anything about the Balance Budget Act, and are people in Arizona talking about that at all, in terms of its impact on Medicaid Managed Care and data reporting?
MS. TEMM: I am familiar with the bill, and I have to say here in Arizona it's been a little bit quiet. In other states, I do a lot of work in California, there, it's all a buzz. But, here, it's been fairly quiet. There's --
MS. IEZZONI: Why is California all a buzz?
MS. TEMM: I think probably because they're seeing different issues being raised, and I think they're still trying to dig out of their mess with Medicale. And even with their new programs being developed, I think because they're looking for anything they can hang their hat on, as far as a standard, or what appropriate reporting should be established, and I think they're looking for anything.
MS. IEZZONI: Okay. Okay. We have one more.
DR. AMARO: Sorry.
MS. IEZZONI: We're not going to let you get away.
DR. AMARO: Just a couple of other things. It's been very helpful, your testimony, to be able to get these questions answered.
Is there any system set up to try to assess the extent to which some of the costs that aren't covered, or the services aren't covered, or to falling in the public health system and are being covered there?
Is there -- of the people who are covered under these plans, that for whom, for example, some of the coverage gaps that you mentioned around behavioral health, where are these folks going for those, and who funds those?
MS. TEMM: They're falling outside the Medicaid Managed Care arena, so they're not -- that data is not really being analyzed. So what's happening, the non-seriously mentally ill, 21 to 65-year-olds, are falling outside the system. So they are probably going through ADHS for services.
So there is not a mechanism to pull together all public health-type services being provided for these individuals. If they are, the carve-outs that are truly, they're still an AHCCCS member --
DR. AMARO: Right.
MS. TEMM: -- they are being covered by these other entities, that data is being rolled in. But if they're -- it's truly a service that's not covered in the program, you're correct, it's being covered by other public funds, and they're not being rolled together, so you really don't see a true picture of what the expenses are for the -- DR. AMARO: Okay. That's what I was getting at.
So that we don't really know what the public is covering here that may actually contribute to outcomes, if the studies could be done --
MS. TEMM: Right.
DR. AMARO: -- would contribute to the outcomes that you would see, so that you really wouldn't be able to attribute those outcomes, necessarily, only to the health care services received under the managed care.
MS. TEMM: Right.
DR. AMARO: And, the last question is, is what system is there for tracking people who are going in and out of the system all the time?
MS. TEMM: As far as falling out of eligibility? DR. AMARO: You know, people who have become eligible, and then fall out of eligibility.
Right. So, is there a way -- how do you handle that?
MS. TEMM: Actually, at the State level, AHCCCS is monitoring that. Depending on how the member loses eligibility, and when they're reinstated, they will be re-enrolled with the health plan that they were with previously, if at all possible. And, usually, there's time limits of 90 days. So within a 90-day period they'd be reassigned to the same plan for continuity of care purposes. The State is really monitoring that more than the health plans, because the health plans have no role in the eligibility or enrollment process --
DR. AMARO: Um-hum.
MS. TEMM: -- other than the annual open enrollment process, and then the auto assignment if members do not choose health plans and they're being assigned into the health plans. The health plans really don't get involved in eligibility or enrollment. It's passed on to them from the State, so they wouldn't be tracking it.
However, I will say, some of the plans have done some interesting studies about their own enrollment dates and changes, to kind of monitor what the average length of time is for their Medicaid recipients. Certain plans have found that their members are there for a year to two years; others are finding that it's a much shorter time frame, it's less than one year. And it really depends on a lot of -- the placement of the health plan and the algorithms for non-categorical.
So for members who can't choose that were assigned to a health plan, that has a large impact on them, as well as the marketing efforts for open enrollment, although we're seeing very little movement from plan-to-plan during the open enrollment process. It's the initial selection criteria, the initial selection by the member that's really driving that. So how attractive that plan is, it's really basically determining who's going to be picking that health plan.
DR. AMARO: So there's no system or study that's been done to look at those people who go in and out and on any outcomes or AHCCCS.
MS. TEMM: There may be some at the individual health plan level, but I'm not aware of any at the State level. But you may want to ask that question of the AHCCCS folks.
DR. AMARO: Okay. Thank you.
MS. IEZZONI: This has been very helpful, Ms. Temm. Thank you.
MS. TEMM: You're welcome.
MS. IEZZONI: Betsy Trombino, you've been sitting quietly waiting your turn.
MS. TROMBINO: My turn.
MS. IEZZONI: Could you just introduce yourself, and then we'd like to hear from you.
MS. TROMBINO: Do I need to move this, or not?
Good morning, and I, too, bring you greetings from the Chamber of Commerce.
I usually, when things like this are going on and people are coming from all over the place, because I looked at the list of where you were all coming from, and so I always, you know, say my little things to the weather gods, or whatever, but I don't have a lot of influence. My daughter got married a month ago, and it was the coldest January 10th on record, and it rained all day, so I don't have a lot of influence. But I did see some blue sky as I drove in today, so maybe things are looking up.
I also wanted to mention that before I came here, I was at a Department of Health Services meeting, and Dr. Applegate will be here later this afternoon, and I think he'll be able to answer some of those questions, too, regarding ADHS and their public health role in some of these issues, so keep that in mind, as well.
I am here because I am a coordinator for an organization called Family Voices. I'm a coordinator for Arizona. And we are a national grassroots network of family and friends who speak on behalf of children with special health care needs.
That organization, Family Voices, is currently holding its national conference in Washington, and I am one of the people who didn't get to go so, consequently, I am here. Two of our other coordinators are in Washington, so we'll see what the say when they get back. They'll probably have more news. And it's unfortunate in a way that it worked out this way, because they probably would have additional information for you.
I'm also here because I'm a parent. My son, Mark, is an adult now, but grew up in the system, grew up in special health care needs, and grew up in managed care. We have been, as family members of a managed care organization for most of his life, because it has been here in Arizona for a very long time, so I have some experience with commercial managed care, and also with Medicaid Managed Care.
But please keep in mind that I am speaking as a parent. I'm not a provider, I'm not a researcher, I'm not a statistician, and what I know about data is, I'm just learning Excel on my home computer. So I am pretty at the basic level, at this point in time.
A month or so ago when Mr. Goldwater first left a message for me about this meeting, I remember thinking he must have the wrong number, or he must, I don't know, you know, somehow it can't possibly be me, because this does not make sense for me to be here.
And I guess I had trouble understanding the significance of the family perspective on data collection. Because what has always been important to me, with managed care and children with special health care needs, are benefits and services. So if this had been a hearing on benefits and services, then, you know, I would have signed right up.
But, I sort of stalled it off and thought, nah, this can't be. And somebody else called, and I said, no, I don't really think I have anything to say. But then I got a call from the national director of Family Voices, who said, you know, you really need to go. And I said, but, explain this to me. So she helped me understand some of these issues.
And then I called some other parents, and it became more and more clear to me, that without meaningful data, then we can't improve the system. And that's real hard for me, because it seems so basic, that if the system needs improving, we just do it, but I guess that's not always the way things operate in such complex systems.
One of the things that I thought about and wrote down as Mary was talking, is how complex this is at every level. I mean, from HCFA, to AHCCCS, to the health plans, to the individual providers, but it is also very, very complex at the family level. I don't think there's any way that I can even begin to explain how difficult this is, as I listen to these different eligibilities, and different ways that people move in and out of the system, and trying to work on this every single day, and for people, many of whom don't speak English, it's an overwhelming system to deal with.
My remarks today will be geared strictly toward children with special health care needs, because that's what I know about, and that's the population that's represented by Family Voices.
More and more of these children are being served by Medicaid Managed Care. In Arizona, it's been that way for a long time. But in many states this is fairly new, and I think you'll find if you're traveling around, which I assume that you are, that you'll hear maybe a very different picture than you do in Arizona, because some of us, this is the way -- and for a lot of the kids that are served in Arizona, this is the only way they've ever known services. It wasn't like this huge change that occurred as it maybe, say, did in Tennessee, or some of the states that are newer in this kind of a program.
I want to talk about three different issues: one, about the actual collection of the data, how it comes from the families that are being served out there; how it's used by HCFA; by, now I can call it AHCCCS, because now everybody knows what it is, because I kept saying the State Medicaid agency, but I'll call it AHCCCS now, and within the managed care organizations, themselves, the health plans.
And then, third, how that information is disseminated to the public, what happens with this data, who even hears about it, other than people in Washington, or over here on Jefferson, where you're going tomorrow. And, particularly, the families that are impacted by the system, do they ever hear about these kinds of datas that are collected, and what does it mean to them as an individual. As I thought about how the information is collected, it seemed to me first and foremost, and knowing how little I understand data, it seems to me that it's most important to know why are we doing this? Is there a real goal in mind for collecting all of this information?
When I think about -- you answered a question about encounter data, I mean, to me, that is an overwhelming piece of information that is more than I can even begin to comprehend, and why do we need it, and for what purpose is it intended?
Is it really going to improve services or make a difference to the people that are served by all of these programs, or are we just collecting it for the sake of collecting it to say this is how many people were served in any given month by this particular health plan in the State of Arizona. I have my doubts sometimes, is it really clear why we're collecting all this information.
Secondly, I guess, and this also speaks to some of the things that Mary said on a system level. On a family level, I really think we need to look at a better system of coordination. Often, the same information is gathered many, many times for the same child, after birth, by the many agencies as they determine eligibility, and it's all different from one agency to the next, then the particular programs that contract with those agencies. So, you know, you're moving on kind of down the line.
So the health plan collects data again, then the individual providers collect the same data about birth history, and diagnosis, and medical records, and all of these things, it starts all over again. And those same questions are asked of those same families again, and again, and again, and needless to say, it's a frustrating process for all of us who have to do this.
It also is -- information is also collected, in addition to agency, agency, agency, program, program, program, it's also collected many times by the same agency from the same family. And this begins to be extremely destructive and very intrusive. What I finally said to, I think it was Michelle, her name was, from your -- the office in Washington, or wherever she was calling me from, I said, okay, I'll go.
I started calling people to collect information beyond what I knew about. And I talked to one parent from one of the other Family Voices coordinators, who's currently in Washington, who told me that someone comes to her home at least once a month to collect information, to make sure her son is still eligible, to make sure he hasn't been cured, her words, to be certain that his level of need has not changed since the month before, and his basic needs have not changed in three years.
But once a month -- and that's not counting all the people who are coming in to provide services for this child. These are the data collectors, the eligibility people, the ones that make sure that he's not getting more services than he really needs. And this seems, as I say, certainly disruptive and intrusive, at the very least, but it also is an enormous duplication of effort and waste of money, when we're supposed to be looking at cost containment and cost effective programs. And to keep sending these fairly well-paid people into families' homes over and over again, just doesn't make a lot of sense, to me, again, to collect data.
Two other issues that I have written down, and interestingly enough, already came up this morning, and that is for people for whom English is not their primary language, another enormous, it's huge in Arizona, and I'm sure in many other states, as well, the number of providers who can really help with this, it's very limited.
And filling out all of these forms and answering these dozens and dozens of questions that are asked on a routine basis, is hard enough when you are college educated and speak English. I've done it, it's tough. And I cannot imagine trying to do this if I did not speak English, or speak English very well.
A second issue I thought about, in terms of data collection, has to do with balancing the issues of privacy and confidentiality with the needs for data collection. Families whose children have special health care needs are often very fearful of losing their benefits. And when you think of this information as going into some giant computer in the sky, no matter how many times people tell you we're respecting your confidentiality, nobody's going to know this, it's still scary, because all it takes is some glitch to happen and your child loses services, you'll never get them again.
It's terrifying out there how hard it is to get services, and to go back through the whole process again, or for people who happen to be fortunate enough to have some commercial coverage, if that's lost and your child's not Title 19 eligible, you're up a creek. There is nothing for him out there. And I think that's a very fearful thing for a lot of families. I don't know, necessarily, what the answer is, but I think it's just something that has to be considered as we continue to ask more and more information of families who are being served.
Employment and insurance coverage begin to be at risk, and very threatened by the knowledge that I may have in my family a very expensive person, and who knows that, and what will they do with that information. It's unnerving, to say the least.
I'll shift gears now and move on to actually what happens to that data once it's collected. And several questions came to my mind as I thought about this. What are -- okay, once we have it, what are we doing with it? And one of the questions that I thought about is, what I would want to know, I guess is what I was asking myself, what would I want to know.
And one of the things is, how many children with special health care needs are falling within Medicaid Managed Care. I don't know that that is even clear, because it depends on whose definition you're talking about. Is it children with severe developmental disabilities? Is it kids who have asthma? Is it everywhere in between? Who are these children with special health care needs, and how many of them are being served by the program, by AHCCCS, either in long-term care, or acute care?
Secondly, are these children getting the care and services they need? Although such care and services are mandated under the provisions of EPSDT, it's my personal belief that that "T" doesn't always happen. I think we do a lot of that "EPS" and "D," but I don't think we always do all "T's". And I think denials are fairly common. Again, this is my sort of anecdotal experience based on talking to hundreds of parents, but I think denials are happening, and they're happening more often than I would like to see them happen.
I would be interested in data that would show how often services are denied by the health plans, and in addition, how many of them are subsequently appealed, and then what's the outcome of those appeals. I think that the appeals process is very tedious, it's difficult. It sounds easy, but when you get into it, it really isn't that easy to do. And I think a lot of families just give up and say, oh, well, I guess we'll do without that service, we'll do without that piece of equipment, my child isn't going to get that therapy right now. It's real tough to do, and I think that it would be important to know that information, and I'm not sure how it's tracked, at this point.
Another question that may be interesting information for both the systems and families to know, is, and I think this came up before, too, is how are these providers getting paid for caring for these children who have special healthcare needs, because it is different. It's a very different level of care for some of the children.
What is the capitation rate? Is it higher than for typical children? Certainly, the kids I know have a lot more of those encounter visits, they require a lot more referrals, a lot more coordination, and are those providers out there being paid more to take care of these children?
And I guess I'd want to know, if they are being paid appropriately, is it enough, is it adequate to encourage qualified providers to care for their children with special health care needs? There are a few providers in our community who care for a lot of kids with special needs. There are some who care for none, they choose not to do it. It's too hard, it's too complicated, they don't want the extra staff, they don't want the extra work. But, yet, these are very qualified people, qualified pediatric specialists, who could do it, but it's just not worth the hassle to them. The system does not make it worth the hassle, and I think that's unfortunate, because some of our providers are really overwhelmed with kids in their practice.
As an aside, you may or may not know this, but Family Voices, in collaboration with Brandeis University, is currently conducting a nationwide survey of families whose kids have special health care needs, on their experiences in managed care, very specific, their experiences in managed care.
Arizona is one of the first states being surveyed. I think the surveys go out in the next two weeks. And, so you might want to, down the road, contact the Family Voices' national office to see what this survey is showing. I think it'll be very interesting to see what we find out, in Arizona, as well as nationally.
Moving on to dissemination. I would like to see pertinent data disseminated first and foremost to families, whose kids are served by Medicaid Managed Care. I'd also like to see data disseminated to organizations such as Family Voices, which can then assist in the interpretation of that data from a family perspective, and share it with parent leaders and with other statewide networks, because sometimes it takes somebody, and this is, I guess, speaking for myself, I need somebody to help me sometimes understand this and interpret it. Okay, what does this mean for me? I mean, I can read it, and I can probably understand it, from an intellectual level, but what does it really mean for me providing care for my child at home.
And then, third, the information needs to go, obviously, to the agencies and the providers encouraging them to possibly establish some family advisory groups. I think sometimes there's a huge gap between the provider agencies, the health plans, AHCCCS, and the families that they serve. I'm not sure that there's a whole lot of back-and-forth sharing of information.
I have seen success in family advisory groups, and I think it's something that we might want to consider, groups that are -- can examine data and make recommendations based on what I'm finding out, from satisfaction surveys, for example. Perfect place for a select group of people look, okay, what does this mean? We're getting all of these poor responses in this area, what can we do about that, and that's the people who are turning in those surveys, what does this mean, how could we do this better?
So it seems to me there ought to be some ways to make good use of that data, particularly from satisfaction surveys, and perhaps even some of the more hard core data kinds of things. I would encourage any information that's collected to be reported in very practical terms, very user friendly language, so that people can utilize it, not only in their own understanding and the collaboration and their work with the health plans and with AHCCCS, but also in their lobbying efforts, in their advocacy efforts at the legislature, at Congress.
Because, if I can't understand it, I can't very well call Susan Gerard, who's also going to be here tomorrow, who happens to be my representative from my district, if I don't understand it, it's very hard for me to call her up and have a reasonable conversation with her, if I don't understand the information that I'm getting in a way that helps me.
I have a five-year-old grandson, and he was served by AHCCCS for the first three years of his life while his mother finished college. And he's a pretty typical little boy, quite healthy, and his care was purged. I look back over those three years, and I think my daughter could not have done what she did, could not have finished college, without health care for him. And it definitely met his needs, and I'm very grateful to the system for providing that care for him during that time that it was needed by our family.
However, if I took my son, who is now an adult, if I took his special needs and tried superimposing them onto my grandson in Medicaid Managed Care, I'm not sure that I could tell you the same thing. I can't say that for a fact, because I don't know, it didn't happen. But I think it might have been a very different story, I think our family would have had a great struggle in obtaining services for this little boy if he had a whole lot of special needs.
And so I would encourage you, as you look at data, for purposes of planning, for purposes of recommendation, for whatever things that come along that are part of this data collection and data analysis, that you look carefully at children, certainly, but particularly children with special health care needs, because I do think there is a gap there. I think typical kids are being well served, but I think kids with special needs not always nearly as well.
And so I would encourage you to look at that, and be sure that when you ask for information, that you ask specifically about that, just as with behavioral health. I think that's another group of people that are not always being served well. I mean, if you look at more typical populations, it looks great in Arizona. And my friends down there at 701 East Jefferson will tell you that, it's looking great.
But I think if you look at people whose needs go beyond the typical needs, either in children with special care needs, or folks needing behavioral health services, I think it's a real different story, so I would encourage you to do that.
And thank you for inviting me, and I apologize for stalling around so long.
MS. IEZZONI: Well, your comments are extremely valuable, and we're very happy that you came, Ms. Trombino. Are there any comment or questions from the panel? George.
MR. VAN AMBURG: Yes. I appreciated your testimony very much, and I can relate to your multiple data collection problem. But, it presents an interesting problem, and I'd like your view on it.
MS. TROMBINO: Okay.
MR. VAN AMBURG: In order to eliminate the collection of the same data by multiple providers, especially in a case where you have a totally special health care needs and there's multiple referrals, that means that data has to be shared among providers.
And how does your group, and how do you feel about that, and how should that be controlled?
MS. TROMBINO: I think it may be one of those things that will vary almost from family-to-family. There are some people very willing to have that information shared, or willing to sign off on it and say, no, it's okay for it to go here, here, and here. Other people want control of that. I can remember asking, some years back when my son was receiving a whole lot more medical care than he does now, asking if I could actually have things and carry it from place to place, because I was nervous even then, even when I didn't understand what was happening. I guess I wanted it in my own hands. And I was always told no, you know, it has to go through some official thing. I couldn't even hand-carry x-rays, or whatever, half the time.
And I think it's going to be, as you say, a complex issue to solve. It might be interesting to talk with a group of families who are currently utilizing multiple systems for their children, seeing a group of many subspecialists, ask them, you know, what would work for you? How could we do this in a simpler way, but that would not jeopardize your privacy, your control over who does or does not see your child's records?
My guess is, that there probably are some creative ways to do this, and I would think it might be worth the Committee looking at that specific issue, perhaps in conjunction with Family Voices, which is probably the group that makes the most sound, because I am worried about it. I think it's a balancing act.
On one hand, you hear people say I don't want one more person asking me these same questions again, I don't want to fill out one more form; and, yet, if I sign on the dotted line, where is that information going? And I think it's a huge issue. And maybe there isn't a simple answer for it. I don't know. I wish there were, because it's a problem.
MS. IEZZONI: You know, a lot of what you're describing sounds like repeated assessments to make sure that there's no malingering --
MS. TROMBINO: Um-hum.
MS. IEZZONI: -- or an effort to abuse the system.
MS. TROMBINO: Yes.
MS. IEZZONI: Do you know whether those data go into any sort of repository and are tracked; or, Ms. Temm, do you know anything about how those data are used by any plans, or whether once it's obvious that the child still needs the level of services that they were assessed for, or whether those data are lost, or just discarded?
MS. TROMBINO: I don't know. There might -- you know, there might be someone here from another system as the days go on, you know, today and tomorrow, that might be able to answer that question. I think part of the problem is that children are served by different programs, and each one of those feels the need to assess ongoing needs, and is this severe brain injury, cerebral palsy, whatever, is suddenly not there any more. I just find that just so amazing that that continues to happen.
MS. IEZZONI: Yeah.
MS. TROMBINO: But whether that information is kept recorded, I would certainly think it would have to be because, otherwise, I mean, why would these people even bother to do it. They must be keeping an ongoing record, probably through some sort of case management or care coordination system. Do you know --
MS. IEZZONI: Do you know anything?
MS. TEMM: I can, just a little bit. For the disabled -- for the developmentally disabled that are part of the ALTCS Program, our long-term care system, keep in mind that that portion of the program is sort of distinct from the true long-term care program.
And I can tell you a little bit on long-term care. There are requirements that the contractors evaluate and assess an individual 30 days, 90 days, 180 days, and it's a continual client assessment and tracking situation. What happens is, the case managers at the ALTCS Programs actually enter that information into what AHCCCS refers to as the CAT System, the Client Assessment and Tracking System.
But this is also a good indication of data that's not being utilized to its potential, because what happens, it's a one-way system. The data is going into the system, AHCCCS can generate reports to monitor the individuals and what's happening with their care, but the program contractors who enter the information, who could utilize it on their case management, don't have the capability of pulling the data out and doing their own reporting off of it. It's a one-way system.
And the ALTCS Program has -- the program contractors have been very verbal about that's one thing that needs to change, because it would really cut down on, again, the same data being asked, you know, multiple times. If we could pull it continuously and do reporting off of it and analyses off of it, it makes a lot of sense.
MS. IEZZONI: Why haven't they changed that?
MS. TEMM: I'm not sure. That --
MS. IEZZONI: Is it politics, is it concerns about the confidentiality?
MS. TEMM: I'm not sure -- I really don't have a good reason to tell you. It's really been one of those issues that it's been brought forward a number of times and its not been addressed.
MS. IEZZONI: Okay.
MR. DETMER: I also really your testimony. How many, just to give me some idea, quantitatively, I mean, how many times in a year, or just as a range, I mean, do you have to produce from these data, pull these various data out of hats? I mean, just what is the --
MS. TROMBINO: You mean for a family?
MR. DETMER: Yeah. You were saying it's a real problem.
MS. TROMBINO: Okay.
MR. DETMER: And I'm willing to accept that, I'm just wanting some quantitative sense of --
MS. TROMBINO: Okay. No, I understand. I just want to be sure that I was following your question. I think it's going to vary from -- depending on, number one, on diagnosis and eligibility, because some children seem to be in every system that there is within our state. They're in acute care AHCCCS, they're in long-term care, they might be receiving SSI benefits, they're in our Title 5 special health care needs program, could be an early intervention, I mean, they could be in every system.
MR. DETMER: So, how about just to pick one of the ones at the end --
MS. TROMBINO: Just -- okay.
MR. DETMER: -- or one at the middle, and give me some idea.
MS. TROMBINO: Okay. I think anywhere, for just data collection, and just re-checking to make sure that everything is still --
MR. DETMER: Right.
MS. TROMBINO: -- the same as it was, and is this child still needing the services, it's probably between 30 and -- every 30 and 90 days that someone comes in to do these --
MR. DETMER: Now, that's for, if you will, an average, a representative of a child with a mid-range amount of --
MS. TROMBINO: That's --
MR. DETMER: -- amount of maintenance.
MS. TROMBINO: Yes, I think that's probably --
MR. DETMER: Okay. Thank you.
DR. AMARO: And it sounds like, in addition, whenever you interface with a program or its provider, there may be new forms --
MS. TROMBINO: Absolutely.
DR. AMARO: -- to fill out, both in enrollment, or at periodically where there's three assessments going on.
I wanted to, if I could just say --
MS. IEZZONI: Go ahead.
DR. AMARO: -- that I really appreciate you reminding us, because I think it's part of some of our major questions, of the fact that data reported for the entire population covered may not mean that the system is working for everyone equally and, clearly, especially for those who may have need for more intensive services. And, you know, you talked about one specific group, and there are other groups like that.
MS. TROMBINO: Yes.
DR. AMARO: And there are a need to really track -- to develop systems that help us track how the system is working for people in different categories, or people with special needs, and not just looking at overall data, because that may really misrepresent the future for them, that maybe the system works very well for people who don't have much health care needs --
MS. TROMBINO: Um-hum.
DR. AMARO: -- but that for people who have to interface with the system a lot, there are some specific issues that need to be addressed, and if we don't track those, then we're never going to see them and be able to address them.
MS. TROMBINO: Um-hum. Yeah, I think that's very wise, and it just is one of those things that I think gets lost sometimes, especially in huge systems --
DR. AMARO: Right.
MS. TROMBINO: -- of data collection.
DR. AMARO: Right.
MS. TROMBINO: Because it may look very positive. And even something like satisfaction surveys --
DR. AMARO: Yes.
MS. TROMBINO: -- there were times in my life where that was the last thing in the world I would have done, was completed a satisfaction survey. And, so I'm wondering if the people who are the most overwhelmed with this system even bother to respond. I think they're -- often, you know, you think you're upset, and you're angry, you're going to do this, but the reality is, it's one more thing to do, it's one more thing to fill out, it's one more piece of paper.
And so I'm even wondering how that might impact something as simple as satisfaction surveys, just who's filling it out.
DR. AMARO: Um-hum. We heard at our last hearing that, in fact, the response rates are very low on those, so it's hard to tell.
MS. TROMBINO: In general.
DR. AMARO: In general.
MS. TROMBINO: Okay.
DR. AMARO: And so it's hard to tell, really --
MS. TROMBINO: Um-hum.
DR. AMARO: -- who fills it out and who doesn't, and whether you're getting the kind of bias you're suggesting.
MS. IEZZONI: Don.
MR. DETMER: I guess, Lynette, do we know the address of their national organization?
MS. ARAKI: Well, we could get it -- I can get it.
MS. TROMBINO: Yeah. And they found me through --
MS. ARAKI: Jason has it.
MR. GOLDWATER: Yeah.
MS. TROMBINO: I was going to say, that's how they found me, it's in Albuquerque.
MS. ARAKI: Okay.
MR. VAN AMBURG: Okay.
MS. TROMBINO: And, you know, the actual office is, it's in New Mexico, and that's how I was tracked down. So my guess is that that's the office to track down.
MR. DETMER: We may have some follow up, and I just wanted to know.
MS. TROMBINO: Okay. That would be fine, and as you -- I don't know, is this something you're doing in other states?
MS. IEZZONI: One other state.
MS. TROMBINO: One other state, okay.
MS. IEZZONI: Yeah.
MS. TROMBINO: Okay. Because it might be worth seeing if -- yes?
MS. IEZZONI: Um-hum.
MS. TROMBINO: -- what different kind of picture you get from another state, because Arizona is certainly unique in many ways, and not the least of which is that we've been at this for a really long time. That does make a difference.
MS. IEZZONI: Um-hum. Um-hum. I'd like to just explore a little bit more what you think the solutions might be around this concern about privacy and confidentiality, because I hear exactly what you're saying, that if you think that your insurance coverage is vulnerable, you may not answer entirely honestly the questions about your functioning or how you're doing.
And, yet, we need that information, as Hortensia suggested, to be able to make sure that what is happening to people with special needs is of adequate quality in achieving the outcomes that we would hope that we would be achieving.
From talking among your colleagues and other people at Families USA, how do you think we can resolve this tension?
MS. TROMBINO: It may be sometimes based simply on how the questions are asked, and how clearly this has been explained, because I think people often don't understand what's happening to this information, you know, where is it going, is my name somehow attached to it, my child's name Social Security number, date of birth, all of these things that would identify that person. And I think sometimes people are even unclear as to why the questions are even being asked, so sometimes it's a matter of clarity.
It may also be a matter of who's asking, and how the question is phrased in a way that isn't so scary and intimidating to people. I mean, I can be asked for the identical information by one person in a certain way, and a day later be asked the same question and it has very different tones to it, a different mechanism.
And that's, I guess, why I was thinking about a way of maybe developing some of these things with input from a family advisory group that can test it out, you know, how does this feel to you? If you're asked these questions in this way, are you more likely to respond, or are we just way off base here?
And, or, are we just continuing to beat our heads against the wall, we're never going to get the information, because people are really scared that something is going to happen to their child's services. I've heard that so often, as long as I've been in this business for about 18 years, and I continue to hear it, and it just amazes me, the fear that people have that their child will lose services if they complain too much, if somehow the information gets out there to their insurance company, or their provider, or health plan, or whatever, and I think it's an issue that we've been grappling with for as long as I can remember, and I think we're just going to have to keep working on it.
But it probably needs to be worked on in collaboration with families who are in the system right now as it exists -- I'm kind of past that, my son's an adult now, he's got his own care plans and does his own thing -- but with people who are in the current system as it is, and ask them, you know, bring a group of people together, bring a focus group together of families who are in these systems, in long-term care, in Medicaid Managed Care and say, you know, we need this information, but how can we get it in a way that does not feel threatening to you.
MS. IEZZONI: In one of the -- yeah.
MS. WARD: On that same vein, are you aware if your organization has been trying to -- has it got any documentation instances where certain kinds of informations have been used to deny services?
MS. TROMBINO: Yes. I think that, nationally, they probably do. I don't know the specific --
MS. WARD: Okay.
MS. TROMBINO: -- I mean in Arizona, but I would think it would be worth a call to the national office to see if they think -- because one of the things that Family Voices does a great deal, is asks people to write things down and submit them, so that when the time comes for testimony for input to Congress, or to a state legislature, whatever, we actually have some examples of what is happening out there. So my guess is yes.
MS. IEZZONI: George.
MR. VAN AMBURG: We've talked a lot this morning, we've talked at some other hearings about measuring outcomes and quality of care.
As a parent and as families, what would be meaningful measures of outcome in quality of health care?
MS. TROMBINO: Oh, wow. I think, for me -- actually, there's another document I should get for you. One of the things that was developed a few years ago was a little document called, "The ABC's of Managed Care for Children with Special Health Care Needs," and it was developed by families, so I should get a copy of that to you, because it lists exactly that.
What are the things that families would be looking for to say this is a successful model of managed care for a child with special health care needs, and it's not a huge document, it's maybe ten pages, but it's pretty comprehensive. I happened to sit in on that group that developed that.
And one of the things that I think, as I look back on what was important to me, certainly basic issues like continuity, and referrals to specialists when I needed them, and a simple way to communicate with my providers and, you know, those kind of basic things that I needed as my son grew up, and if I wasn't satisfied, what can I do? What are the alternatives? Are there ways to get a second opinion if I'm not sure?
And I guess first and foremost, how is my child doing? You know, are we making progress here, even minimal progress, or are we just stagnating because I can't get to the right person? And I think so often that happens, and you know that person's out there but you can't get to them because of the barriers that exist through your plans, and I think that certainly is a frustrating process to people.
And the best judge of how that child is doing in my opinion, is the family and the primary care provider, and are we getting those things done. And is the care making the difference in that child's life. I mean, that doesn't mean that everybody's going to be a, you know, taxpaying working citizen, but there still are things that occur that make a difference in that child's life, and make for what I consider progress, even though it might be minimal.
But I will make sure that I get that -- it was done maybe two years ago, and it's still pretty current, and I will make sure that you get that.
MS. MOIEN: Lisa, do you mind if I ask a question?
MS. IEZZONI: Absolutely not.
MS. MOIEN: I'm simply -- I'm summarizing from this information --
MS. TEMM: I can see you are writing like crazy over there.
MS. MOIEN: I'm writing, we'll see. But I felt when I left here maybe I would be sorry if I hadn't asked you this. You mentioned your grandson being in care, on being a well child in a managed care, and I'm assuming, then, that your son started out at that same age in non-managed care.
MS. TROMBINO: Correct.
MS. MOIEN: And I was wondering whether you saw --
MS. TROMBINO: Because we're talking about that many years ago.
MS. MOIEN: Yeah. I was wondering what you saw then as the difference to how you thought he would have been treated, given this care at the early age, versus --
MS. TROMBINO: Okay. I think what the big difference is, and this is just health care in America, I mean, this is, you know, what I've seen in -- I mean, my son with special needs is 28, the changes are unbelievable, and all of us, Mr. Murphy, you know, is old enough to understand that.
I think what I see as the difference, is that we were able, early in Mark's life, to go wherever we wanted with no questions asked. Now, we had to pick up our 20 percent, which is often a chunk, but we could always do it. And there was never any hassle. If we wanted to take him to Baltimore, which is what we did, we did it.
And, now, that would be next to impossible. My child born today, in Phoenix, Arizona, which is where he was born, I could not hop on that airplane and take him to Baltimore. It just wouldn't happen. And, so I think what we're seeing is enormous changes for all of us. But for those of us who deal with special health care needs, it's an even bigger issue.
And so I look at my grandson, who I can say thrived in this, but he had, you know, two ear infections, you know, a few bouts of GI problems and, you know, no big deal. It was wonderful. But I think that we're dealing with realities for people with special needs that did not exist when Mark was growing up.
And I know I would fight for it. I know I might be able to get some of it, because I learned how to deal with managed care. I learned how to make the system work for us as best I could, and I think we were very fortunate, once we shifted, our health plan shifted to a managed care plan when he was maybe ten or twelve. And by that time we had done most of the big stuff, by the time he was ten or twelve years old.
So, it's an interesting evolution, revolution, I guess it is.
MS. IEZZONI: Don.
MR. DETMER: Yeah. Just a footnote to your comment. We had hearings a couple weeks ago in Washington, and heard from some people that are doing data registries on simple things like immunizations --
MS. TROMBINO: Um-hum.
MR. DETMER: -- that are continuity of care issues. And they stated just as a very offhand kind of -- well, of course, we all know this, since the tone of your voice, that that's really eroded a lot recently. And, in fact, so you're not even necessarily talking about --
MS. TROMBINO: Interesting.
MR. DETMER: -- elegant problems, some --
MS. TROMBINO: But just basic things.
MR. DETMER: More of what we would consider pretty basic things. Now, and, unfortunately, that was sort of anecdotal, too. We don't have a lot of firm data on that, but they seemed very convinced that that was, in fact, the case.
MS. TROMBINO: Maybe it would be well worth looking at.
MR. DETMER: Yes.
MS. TROMBINO: And I think -- I mean, when I look at my own family, my own grandchild's success, so to speak, in the system, he was in a fairly sophisticated family. You know, I knew the system, I made sure my daughter knew the system, she made sure it happened. So we're probably not the best example of that, either, of that working for a typical child because, you know, she knew how to do it, because I made sure she knew how to do it. So it -- you know, for people who are less sophisticated, less knowledgeable, don't have transportation, don't speak English, it's a whole different situation.
One of the things that Mary mentioned was the utilization differences between commercial managed care and Medicaid Managed Care. I find that fascinating to look at. It shouldn't have to be that way. And that that really -- you know, I felt that in my heart when she said that, I thought it should not have to be that way, but it is. DR. AMARO: I actually had another question for Mary that I had forgotten to ask. One of the things that I think people had hoped, or maybe were in the best place -- plans with managed care, is that providers would now be more motivated to provide preventive care and, you know, preventive education.
And I was wondering whether there's any database that you have to track whether, in fact, that's happened or not, and who sort of it happens with, and who it doesn't happen with; is there anything that helps us look at that?
MS. TEMM: You'd have to ask AHCCCS, specifically, if they've done it across the plan -- I mean, across the program in toto, but I do know that the plans have done a lot of studies on their own related to that, preventative services, and what the potential outcomes have been --
DR. AMARO: Um-hum.
MS. TEMM: -- and potential costs savings, what the utilization has been against that.
Some of the plans, it's been a very sophisticated study, and that's probably the larger health plans. Some of the smaller plans are doing very basic things with it.
But I think, again, they're looking at preventative services because, again, I think some of the plans learn through the course of their contracting and how they developed their networks and their reimbursement and incentives for the providers. That has changed throughout the years, and I think they've seen changes in behavior related to the preventative medicine along the same line. DR. AMARO: We talked a little earlier about carve-outs -- I keep thinking of different questions I want to follow up that we asked some other people in our previous hearing -- with respect to the behavioral health carve-outs, do those contracts articulate, with any level of specificity, reporting, or analysis, and what does that look like?
MS. TEMM: Reporting. Basically, pretty much the same standards as the AHCCCS Program, that it's 88 -- or their subcontracted entities are performing the services. They have to meet the same encounter requirements.
DR. AMARO: Oh, okay, in terms of the analysis of the data. And has that been pretty much delivered?
MS. TEMM: I don't know.
DR. AMARO: Okay.
MS. TEMM: That would be a good question for the AHCCCS folks.
DR. AMARO: Okay. Thank you.
MS. TROMBINO: I apologize, but I have another meeting.
MS. IEZZONI: Yeah, yeah, I was going to say --
MS. TROMBINO: I feel like that's all I do is go to meetings.
MS. IEZZONI: -- we have a minute or so left, but we really, really thank you.
MS. TROMBINO: Thank you.
MS. IEZZONI: That was really very, very thoughtful to put a human face on --
MS. TROMBINO: So anything that, you know, follows up, let me know, and I will send "The ABC's of Managed Care" to --
MS. IEZZONI: To Jason.
MS. TROMBINO: To Jason, okay.
MS. IEZZONI: Yeah, just --
MS. TROMBINO: And I have that address. Okay.
MR. HITCHCOCK: Do we know how to contact the Brandeis folks about this survey?
MR. GOLDWATER: Yes.
MS. TROMBINO: I --
MS. IEZZONI: Yeah.
MR. HITCHCOCK: Okay, good.
MS. IEZZONI: Yeah.
MS. TROMBINO: So that's it. Okay.
MR. DETMER: Thanks.
MS. IEZZONI: Thank you.
Well, we are actually scheduled to break for lunch, but if there's anything urgent we -- yes, somebody from the audience.
MR. HALL: Just a quick comment. Mary did a great job --
MS. IEZZONI: Could you please step to the microphone --
MR. HALL: Okay.
MS. IEZZONI: -- thank you, and introduce yourself again.
MR. HALL: Yeah, it's working. My name is Donnie Keaton Hall. Again, for you all who weren't here to hear my introduction, I am the principal and CEO for a health care consulting firm in Phoenix, and we do a lot of consulting for other State agencies, just like Mary, on Medicaid Managed Care.
Additionally, I've worked quite a few years at AHCCCS in their office of managed care, who's the division within AHCCCS that is the interface between the agencies and the health plans, and so working in that division was a unique perspective.
Anyway, what I was wanting to say, a lot of the questions are very interesting, and I'm just taking notes vigorously, because I have comments to add to those that maybe can clarify some of the answers that you may have. And instead of, you know, maybe taking up all your time with them, if I get your mailing information, I'll have someone send a written comments to some of these questions that you're asking, because I think a lot of the questions, at least that I'm hearing, seem simple on the surface, but they're actually very, very complex.
Like, for example, when we were talking about the eligibility requirement in back data versus what the health plans have, what a lot of people don't realize, is that AHCCCS, the Medicaid agency, does not do any eligibility data themselves. They do not make a person eligible for the system.
That's done by the Department of Economic Security, and they have their own computer systems for doing that which often are incompatible with the AHCCCS' system, and then again, it's incompatible with a lot of the systems that the health plans or their vendors have, so it's very complicated in the sense of resources, time, money, whatever, to make those -- to make that data more useable for everyone. And when a lot of these systems were designed years ago, managed care was not a thought when these computer systems were designed, and so they're very huge systems, very inflexible, and are not easily clique to handle a lot of the managed care issues.
And so what you often see, is that you have a whole army of programmers and system support people trying to work these systems to deliver the type of data that's necessary. It's just a very confusing system. And for the states who are new to this process, they are looking at a price tag of about $18 million for a new computer system to handle Medicaid Managed Care.
And a lot of states, without some type of assistance, just cannot flip that deal alone, and so, therefore, what they try to do is take their existing system and remodify it to handle as much as it can. Even, there are a lot of vendors that supply sort of off-the-shelf computer systems for that. But, still, depending on how the agency's program will run, those systems need to be modified quite a bit, as well.
So, there are a lot of interesting questions. But, as I said, if you make sure I get your mailing information, we'll do a, sort of a written response to the questions, and give you a different perspective on some of this stuff.
MS. IEZZONI: That would be super.
MR. HALL: Okay.
MS. IEZZONI: We would very much appreciate that. That's the exact kind of thing we need to know.
MR. HALL: Okay.
MS. IEZZONI: Very helpful.
MR. HALL: Thanks.
MS. IEZZONI: Jason will talk to you about getting the mailing information.
Okay. It's time to break for lunch. (Whereupon, a lunch recess was taken.)
(Whereupon, the afternoon session began at 1:36 p.m.)
MS. IEZZONI: We're going to get started with our afternoon session. Thank you for coming.
This is the afternoon session of our first day in Arizona, and the morning session was great. We learned a lot. And we expect that we'll learn a lot from the afternoon session, as well.
You all got a list of 37 questions, or something, to answer for us. And, hopefully, you'll feel comfortable emphasizing what is appropriate, given what you do in your daily life.
Dr. Lockhart, you're scheduled first on this agenda. Do you want to lead the way?
DR. LOCKHART: Okay.
MS. IEZZONI: And, can you just introduce yourself, and tell us just a little bit about yourself, as each of you speak?
DR. LOCKHART: Actually, I've done -- I'll do that verbally, but it's also, I think, on the handout that you have.
MS. IEZZONI: Thank you.
DR. LOCKHART: Excuse me if I, at times, have problems. I've been fighting with walking pneumonia, so one of those awful colds decided to go right to my lungs.
Thank you for this opportunity to address the Committee. I'm Carol Lockhart, president of Lockhart Associates, a health systems relations and policy consulting firm, begun in January 1991. I can't believe it's eight years now. But, we provide assistance to local, national, and international organizations planning for and implementing health policy and program change.
My Ph.D. is from the Heller School at Brandeis, where I was a Pew Doctoral Fellow in health policy. I'm speaking to you today as a long-term observer on the Arizona Health Care Cost Containment System. I've represented the Arizona Department of Health Services in the design debates that transpired in Arizona from 1978 until 1981, when we finally enacted our version of Medicaid, AHCCCS.
At that point, I became the acting director, and managed the program for the first five months of its existence, which was five of the eleven months used to make the program fully operational, we did it in a very short time frame.
Later, at Brandeis, I did my dissertation looking at AHCCCS as a political innovation. Now, one of the things I do is speak with health care audiences and legislative groups about managed care and Medicaid Managed Care, with particular emphasis on the lessons learned from AHCCCS.
I'm also speaking to you as a former participant in another innovation, that of the Medicare resource based relative value scale. I served for five years as one of the original commissions of the PPRC, and as such, had an opportunity to observe its creation and implementation. Certainly, my comments today are informed by participation in both of these innovations.
My remarks will focus on policy, design, and context, rather than specific data issues, since they will be more adequately addressed by those scheduled to speak who are more intimately involved with them than I. The remainder of my remarks are not written out fully, but, rather, presented as summary bullet items on which I will comment.
I might also add, that part of my observations come as an old public health person, Sundin and I both were at the State Health Department together, and so, therefore, part of it, as you will see several references to public health, you also can assume I'm an advocate for public health and populations.
One of the -- I'm addressing, basically, three issues: the effect on beneficiaries in the system; important issues of Medicaid Managed Care; and what sanctions enforcement and monitoring is needed.
First, Peter Drucker stated, "Everything new runs into trouble; if it's complicated, it cannot be repaired or fixed. All effective innovations are breathtakingly simple."
I like to point this out, because the realty is, new Medicaid Managed Care systems are not simple and, therefore, will experience difficulties. I say that, because somehow when legislators pass them, they seem to think they will automatically go into existence and have everything work, and they don't.
In the first one to two years, nearly all processes are new. Individuals and providers will be at some risk. For the patient, their safety net has proved to be providers who still care for them, even as the system struggles to establish itself.
And we have seen this over and over in Arizona, Tennessee, and other places where there were real problems in the system, but with less providers, they still delivered care. And so patients may have fallen through the cracks often, but not as badly as they would have, had providers not been committed to seeing their patients.
Significant resources, both money and time, are needed for implementation and data collection. These are largely ignored, or under-funded, thereby compromising service delivery and the ability to gather data and monitor progress. I guess one of my best examples of that is, when AHCCCS was created, 25 physicians were funded to administer the entire program. AHCCCS -- the rest of it was supposed to be done by a private contracted group. AHCCCS now has over 400 people doing regulatory activities, and monitoring, and so forth, in one form or another.
But, again, this was a legislative expectation, that somehow they would not need to fund all of what would be needed around a managed care system. And I mention this, because I think there still persists an attitude similar to this across the land, and people don't want to fund all those trappings. So one of your major issues, I think, is convincing people that you need the data to be able to do something, and I think there is a bias against funding that.
The other thing I think I would say is, that there's also a bias, I think you heard comments this morning about the different agencies and interfacing, and I heard you discussing that. The reality is, agencies create their own phyctums (phonetic), and they don't always want to share, and they don't always want to cooperate. And I think that is another barrier to you effectively getting the data and the information that you need.
Data and information from previous innovations is frequently ignored, since each state sees itself as unique and unlikely to have the same results. We see states repeating the same mistakes that California did in the 1970s, when it instituted Medicaid Managed Care for counties, Arizona's mistakes in the early '80s, and Florida's mistakes in the early '9Os.
As I said, I speak with legislative groups, and when I speak with them, and as they talk about the design of their systems, they sort of vaguely know those problems are out there and that they were done, but they're not going to do that again. And, unfortunately, every time we talk with groups, they are often recreating some of the very same problems that were experienced in those times.
Limited insurance and capital requirements which, again, we see over and over, minimal oversight and general and grievance processes, and marketing, and in particular, have continued to place patients and providers at risk in the system.
I might add, too, that the lack of data that's been available about AHCCCS -- and when I say that, you probably say but there's all these reports, and I know you will hear it from Nelda McCall -- but one of the things that has confused the public, I think, and certainly legislators and others, is that every time you look at a report of Medicaid Programs, you see a blank spot for Arizona, and this has been true for years. It's because we are not a fee-for-service Medicaid Program. This is obviously going to change, now that there are more managed care programs.
But, for years, those of us from Arizona have tried to explain to the rest of the country that we do have Title 19 money, so that HCFA has not made it readily available -- the data readily available to others to be able to look, or even do some comparison in a simple way with what's going on in Arizona, what population was covered, what the costs were, and so forth. So as those reports were issued by HCFA, Arizona was not included.
I might also add, you had some comment about simple and keeping it to the point on data. I might say that's not just for the public, it's also for legislators. I find legislators will not deal with lots of difficult data, so the easier we can present the information, the better. We have to remember that Medicaid Managed Care distributes and redistributes both services and income.
I think that's sort of self-explanatory, but the reality is, that when AHCCCS came into Arizona, we had a program of not quite $60 million going into health care in one year; it doubled to 1.2 million, and it is now at over $2 billion. This changes people's behaviors, and it changes what goes on, and who gets served, and how they're served, and so forth.
It also means that many programs and plans are so interested in competition or market penetration, that they are not looking at what's going on with the patient, and they may be willing to sacrifice some of what is needed for patients, in terms of market control.
Important issues that I think I've seen, as the time's gone by, is that Arizona's program parallels -- its creation parallels a lot of what's been going on in the early the '90s, fiscal constraints on states, new presidents wanting to bring about change, and for those of you that are not terribly familiar with ours, ours happened because Reagan told the HCFA folks to make it happen. And President Clinton has essentially done much of the same by really encouraging and pushing through Medicaid Managed Care.
One of the problems I've seen as I've spoken with legislative leaders across the country, is that there's a lack of legislative involvement and understanding in many of the states where these programs have been implemented. I find this troublesome, because as the programs run into trouble, and they will, they have to have legislative support. And if they've not been involved in at least discussing it and understanding it up front, because this has been mainly an administrative process, there's not a whole lot of support for it when they get into trouble. And so I find this very problematic.
Medicaid Managed Care Programs too often act as fiduciary agents. I really believe that they need to do more than that, and they actually need to use their purchasing power to guide what the system looks like, and the outcomes that come from it, both for individuals, and for populations, as a whole.
I say this again, having been on the PPRC, one of the issues we never discussed was whether the care we were trying to pay for was really the appropriate care. That was not within the charge. But, the reality is, was it what we needed.
Hello. Kathy and I both were at -- in the Pew Program, so excuse me. I didn't know you were going to be here today.
MS. COLTIN: Surprise.
DR. LOCKHART: One of the issues is, there needs to be transparency in plan certification, review criteria, provider information, patient and provider grievance procedures, and so forth.
There are parts of the system that will be at risk, and especially if we do not have the data and the monitoring in place to be able to tell they're at risk. Traditional and minority providers, medical education, research, community health centers, rural and inner-city patients and providers, and public health services.
And you asked some earlier questions about that, but certainly the tracking of sexually transmitted diseases, prenatal care, prevention, and so forth. The linkages in managed care are not there with the public health services and systems. We discussed that even when we created AHCCCS, they weren't there at the time, there was a conscious decision not to do that, things were too busy. I find too often that is the case in many programs, although in some states they are trying to build the issues that look at that, and I would encourage that and applaud it.
Sanctions and enforcement, too often, it is seen as a black box. Managed care doesn't need all the regulatory controls and the other things, it doesn't need the data. The incentives will be appropriate, plans will behave correctly, and everybody will get what they need. That doesn't happen, and I think we've seen over and over that there does need to be monitoring.
We need to define, though, some reward structures. Your questions were about sanctions and enforcement and monitoring. I think there also need to be rewards for plans that respond and creatively move patients towards good health. We don't do that often enough, and I think one of the things that we need is a new set of regulators.
Having been a regulator at one point, I really am not sold on regulation, but I find that when you have to do it, have the right kind, but we need lawyers, contract experts, we need people who are -- program and policy expertise. And I find very often the people who are taking on the regulatory control and management of the new Medicaid Programs, are the same old people that checked boxes before. They are the people that are appropriate to begin to deal with this new world.
Insurance and capitalization requirements are not adequately addressed. This is, again, an error that we repeat continually. We place people at risk. Administration and regulatory enforcement by the executive branch must be real, consistent, and supported by the legislative branch. When it isn't, you have problems, and people do get hurt even more, because there is a reluctance to move if there's not support.
Is survival or efficiency of the program the goal? I think you have to consider that, in terms of your data and monitoring, also. In the first few years of a program, simply surviving is probably more important than being able to have all of the data. By year ten, you have to have data that tells you something. You need to look at both the sanctions and rewards in light of this.
Consumer voice and exit behaviors cannot signal problems in an MCO quickly enough to trigger a market response. Experience with AHCCCS and other Medicaid Managed Care plans suggests market signals may not be wide enough, understood, or known to prevent risk or harm to patients. Market signals are not enough to ensure patient welfare.
Regulatory control, and by that, I do mean data and monitoring activities, must be a necessary part of pro-competitive indigent health care policies.
MS. IEZZONI: Okay. Thank you, Dr. Lockhart.
What I think I'd like to do is hear from the entire panel, and then, because I think some of the questions might cut across the speakers. But, briefly, are there any questions of clarification, any confusion that any panel -- any of the Committee members want to -- okay.
Dr. Greeneich.
DR. GREENEICH: Yes.
MS. IEZZONI: Thank you. And tell us a little bit about yourself. to start.
DR. GREENEICH: I'm Dr. Diane Greeneich, and I'm an associate of Fox Systems of Scottsdale, Arizona, which is a national Medicaid consulting firm. Prior to that, I was the research administrator for AHCCCS from 1995 to '97.
As Medicaid Managed Care expands through the nation, far important issues emerge centering on data. The first issue is the assessment of the value of the managed care delivery system in the care of indigent populations in various geographic regions, what data elements are the most relevant to answer questions about AHCCCS to and use of health services in this population, and how best can this data be collected, and more important, how best can electronic data be validated prior to analysis.
The second issue is, what data elements are needed to determine the effectiveness and efficiency, and utilization of services in high workload and high cost Medicaid Managed Care populations analyzed by health plan, and down to the provider group.
The third issue is the impediments that exist presently to the collection of this data. Resolution of this issue is paramount to having comparative data across Medicaid Managed Care plans nationwide.
Lastly, and I think one of the most important issues, is the articulation of this data with other existing data sets in the states. Medicaid Managed Care data is often the most relevant data for indigent populations that exist within a state.
At present in Arizona, it is difficult because of the Medicaid confidentiality issues and managed care costs to marry this data to other data sets for public and private sector needs, so that meaningful studies of diagnostic groupings can be done on a statewide basis.
Although we do not participate, and I say "we," Fox Systems, in the administration of Medicaid Managed Care, we are consultants to health plans and government agencies, and are an interested party in the eventual resolution of data and information policy for Medicaid by the Department of Health and Human Services.
An assessment of value demonstrates the effectiveness and efficiency in the prevention, diagnosis, and treatment of disease for indigent populations. The collection of encounter data in the appraisal of health care quality and cost effectiveness is the key.
Encounter data provides evidence of managed care organization performance, supports the development and evaluation of capitation rates, and also is required in the reporting by the sir system to HCFA.
In Arizona, we have found that refinement of the encounter system data allows State agencies to demonstrate the efficiency of managed care contracted plans, and that's allowing a more realistic capitation rate structure. In addition, provider data furnishes information on primary care specialists, referrals, PCP affiliations, and provider capacity.
In summary, a comprehensive approach to managed care data requirements provides a level playing field for the appraisal of value for Medicaid Managed Care services for legislators, the health care industry, itself, and other stakeholders' concern about variations in policy and costs that might be evidenced in this new structure.
I think that one of the greatest challenges we face in health care today, is -- especially for Medicaid -- is the collection of appropriate data to determine health outcomes and cost of care and utilization of services, and high workload and high costs Medicaid participants.
Indeed, this issue begs answers to the following questions: What is the most relevant data to collect? Once the data is collected, is it useable?
This challenge consists of gaps in coding accuracy for diagnosis and treatment, the level of ICD9CM specificity required by State agencies to have claims adjudicated, and the existence of supporting data sources to validate the accuracy of the findings.
A further consideration, certainly for Medicaid, is the standardization of enrollment file requirements. Two examples come to mind that demonstrate the need for this intervention. First, some demographics information is considered optional when ascertaining eligibility for Medicaid recipients in Arizona, such as ethnicity.
A second example centers on the relationship linkages between families found within different State and Medicaid databases. Differences in required information produces confusion. Standardization of required fields in Medicaid would provide consistent comparable data.
In Arizona, HEDIS measurement in AHCCCS health plans have been implemented. This process has allowed for a determination and discussion of systems issues between AHCCCS and the health plan, indicator findings and discussions of differences between plans, and plans and regions of the state.
Although the NCQA measures present a beginning approach to performance and outcome measurement in this population, it is in the in-depth outcome studies that the real evaluation of Medicaid Managed Care will take place. And I would hope the Committee would have some recommendations as far as outcome data because, presently, we have found it to be very difficult to find outcome data in Medicaid Managed Care to compare with the state population findings.
Indeed, the data system is the key to the evaluation of Medicaid plan effectiveness and efficiency. Impediments to data collection are present, but nowhere more sensitive than in the collection of encounter data. These impediments are three loosely defined objectives, cost, and technology. As Medicaid Managed Care plan systems rolls out across the nation, there has been an adoption of varying approaches to collection of encounter data at the State level.
Some essential questions to be answered are: What are the benefits of encounter data? What are the cost implications? What are the cost offsetting strategies to be utilized, and what are the regulatory requirements? In Arizona, RSP reporting mandates that HEDIS measures have proved telling in the tightening of objectives towards the collection and use of encounter data.
Certainly, another impediment is cost. And those of us that are involved in marrying data sets, as I will shortly be sharing with you, have found that the cost of data handling, processing, reporting, and retention must be weighed against the complexity of the evaluation parameters needed. Standardization of reporting parameters would facilitate realistic cost projections of needed encounter data collections for State Medicaid agencies in contracted managed care plans.
Lastly, we live in a very technological society, and the technological requirements for collecting encounter data often asked is to efficient encounter data collection operations. And these technological impediments are failure to define interface requirements, electronic formats, data exchange frequencies, the maximization of electronic data transfer, and Web-enabled technology.
I know I sound very technological with you all, but, indeed, as we move into these new stages, one of the biggest stumbling blocks that we find that our plans or our clients have difficulty in meeting these new requirements, and are not very "technologically savvy," quote, unquote.
The issue of articulation of this data through other existing data sets at both the national and state level, is important in the comprehensive picture of the health of Americans and individual state residents. In Arizona, we have been very fortunate to have several collaborative efforts that have come to the forefront, and I'm sure Sundin will share about one of them.
One of the committees that I have been privileged to work on is the Arizona Asthma Coalition. As a member of the Data Sharing Committee, we have grappled with cost, confidentiality, and difficulty of obtaining acute -- Medicaid acute pharmacy data, because AHCCCS does not carry acute pharmacy data on their PMMIS system.
I believe that it's only through these coalitions that we have an opportunity to really speak about some of the issues that we all face, and that this dialogue will bring about a partnership, as well as continue the pioneering efforts that we're all dealing with.
Today in Medicaid Managed Care we exist in the "DRIP" concept. Have any of you heard about the "DRIP"? We are data rich, information poor. And in order to provide information necessary on health and health-related factors, I have the following recommendations for the Subcommittee. Number one, plan methods of validation of electronic data. I can't emphasize this enough. Those of you that have struggled through HEDIS know what I'm talking about. It's very difficult to -- we need to make data the best that it can be, rather than the best that it can be today. And I certainly think that the federal government can aid this process.
Number two is a consideration of cost when planning standardization of reporting. What are the questions and what are the data elements required to answer the questions? And this whole process shifts from the emphasis from costly data dredging, which is asking random questions of your database in numerous ways to see if you can find the answer to what to ask next through more efficient data mining, and cost and efficiency are really our two focuses today.
The other issue is the cost of obtaining the data, and the fact that we have multiple players obtaining the same kind of data. If we can have data sharing efforts, then we can facilitate cost-effective ways in which to handle health data.
Third is a database for Medicaid Managed Care maintained by HCFAs.
And, last, is an adoption of a minimum encounter data set as an industry standard. And we have included that in your handout. What we believe, through our many years of experience in AHCCCS and other systems, as really being an industry standard that would facilitate what we need to have in data. Thank you.
MS. IEZZONI: Any quick questions or clarifications for Dr. Greeneich?
Lynette.
MS. ARAKI: I just have one that maybe -- I mean, you don't have to answer it now, but if you could describe what you think should be the minimum encounter set.
DR. GREENEICH: It's -- actually, it's --
MS. ARAKI: Is it here?
DR. GREENEICH: -- it's on your handout, the last three --
MS. ARAKI: Oh, I see it. I see it.
DR. GREENEICH: Right.
MS. ARAKI: The last two slides.
DR. GREENEICH: The last three slides, I think, I believe.
MS. ARAKI: Okay.
DR. GREENEICH: But that would ensure that we would have encounter data that would be useable in evaluation.
MS. IEZZONI: Okay. I'm sure we'll come back to that.
Dr. Applegate.
DR. APPLEGATE: Good afternoon. I bet you were thinking you would have come to Arizona for sun, right?
I'm the medical director for Community and Family Health Services, which is one of the organizational units in the Department of Health Services that's responsible for the traditional maternal and child health, WIC, those sorts of programs.
And I really struggled with this, because I couldn't figure out what perspective you wanted me to bring to this. I mean, there are obviously a myriad of programs in the Health Department which interface with AHCCCS. I couldn't begin to even list them all in 15 minutes, much less discuss and respond to the thousands of questions about each, so I just sort of picked stuff that appealed to me. And I'm more than happy to discuss any other issues that you're interested in that I may or may not know the answer to.
But I first wanted to start with a bit of barely relevant history, but of interest to me, in that we always say that we never had a traditional Medicaid Program in Arizona, and that's not quite true. In 1974, the legislature did, in fact, enact Medicaid, and it was fully staffed in the Health Department. And the only thing is, we just didn't see any patients, with one exception, and that was the EPSDT pilot program. And I joined the Department in 1976 as the EPSDT medical director, so we saw about a hundred patients in 1976 under traditional fee-for-service Medicaids, for whatever purpose, whatever reasons you want to use for that, there it is. It's a little bit of history.
But the legislature decided not to fund it, because it was one of those runaway government programs, and so that's when they struggled, and Carol referred to the history, that they wanted an alternative to traditional Medicaid, and that's how they finally came up with the Arizona Health Care Cost Containment System.
But I think the issue that I really want to discuss with you, which is very close to my heart, which is the interface between existing public health programs and Medicaid. And the one that's of most interest to me is the program for children with special health care needs. Now, does that ring -- CSHCM is the current acronym. Does that ring a bell with most of you?
Okay. Every state -- it used to be Crippled Children Services in every single state, and then it sort of evolved over the years, so they tried to find a better name, and so a lot of states would not settle on one. That's the national acronym, but many states call it Children's Medical Services, or Handicapped Children's Services, or whatever. In this state, it's called Children's Rehabilitative Services.
And we are -- we have what is commonly known as a carve-out. Does that ring a bell? And I won't go into the history of why that came about, but children who are eligible for our CRS Program are continued to be served by our program. And if they are AHCCCS eligible, we receive the Title 19 dollars directly into our agency, as well as the State match is appropriated to us directly.
The problem is, that simultaneously within receiving specialized medical services at our program, their primary care services continue being provided by the general AHCCCS program, which creates an interface problem, which is very difficult, because one child is simultaneously enrolled in two different programs, and if they're both managed care programs, they're both managing, trying to say who's responsible for what.
The answer to that, in my opinion, and this is clearly my opinion, is that I think we are moving towards an era of specialized managed care. We're seeing this, I think, with the pilot programs that are starting up in California, and in Florida, in Washington D.C., and a few other states, and I hope that that's the direction that I think we're going to be headed in Arizona; whereas, rather than carving out services, we will carve out the entire child. And I'd like to do away with the term "carve-out," because that has all sorts of negative connotations. So I'm referring to it as specialized managed care.
And the program that we have evolved in this state is, in fact, a managed care program. Many folks don't recognize it as such, but it is. We contract on a competitive basis for providers to provide all of the services necessary for these children, and we do it on a fixed sum basis. It's the ultimate managed care. They get a single sum for all children for all services all year, regardless. Whether the number increases or not, they get a once-a-month set amount of money all year.
What I'd like to see us do is expand that to include primary care, as well, so that we wouldn't have that interface problem. That's where our families struggle all the time, say, wait a minute, you know, am I supposed to go to this physician for services, or am I supposed to go to that one? And the physicians have the same struggle, saying is this -- who pays my bill in this case? Well, we'd prefer that it all come together in one location.
There are three issues around that, the key of which is definition, what is a child special health care needs. This is a national issue that we've all been struggling with for years. I think there's finally some momentum working on coming up with this.
There are a couple of initiatives, one of which is undertaken by the National Association of Children's Hospitals and Related Institutions, NACHRI, which is just now finishing up an automated system of looking at ICB9 codes and trying to figure out a combination of those to procedure codes, what would define, at least at a first level, who's the child's special health care needs.
But I don't think that's going to be enough. We're going to meet in March and try and look at that. I think what we need, in addition to that, is some sort of functional assessment, because not all children with a given diagnosis have special health care needs, and not all -- so, I think -- and so in that regard, in addition to a diagnosis approach, I think there also needs to be a functional assessment, and that's something that we are doing in this state.
We've been trying to do this for years. We think that every child that goes through the program needs to have a functional assessment, and some sort of easily definable and reportable number that can be manipulated, some data point, in terms of what their functional status is. We've elected, after -- just because there not very many options out there, to go with WEEFIMS. And I don't know if any of you are familiar with the rehabilitation system and adult rehabilitation, there's functional independence measures, FIMS. The pediatric component of that is a smaller version, and it's WEEFIMS. Seriously, that's how they came up with it. We are now doing that assessment on a pilot project. We hope to, within the next contract year, to move that to every child so we would combine a numeric assessment of their functional status in six domains, plus their diagnostic information.
Also, I think that that will enable us to track outcome. And that was one of the issues you were interested in. It's always been a challenge. How do we know what we're doing makes a difference? I think the functional assessment on a scale that's usually about a six-point scale, we can see whether or not a child is at least static, if not, hopefully, improving over a period of time. Clearly, children with chronic illnesses, it takes a long period of time before you notice it. So I think that's a value in this kind of specialized managed care setting.
The other thing is that our database also includes the primary diagnosis, that is, the eligible diagnosis. What is it that makes this child have a special health care need? Part of the problem with the encounter data, is that the diagnosis for any encounter is what brings them in for that visit.
DR. GREENEICH: Um-hum. Right.
DR. APPLEGATE: But then you have a very hard time looking at all of the visits and bringing them forward and say, well, what's the kid's real problem? And so that's one of the things that we've had to add on to the traditional AHCCCS database, is this primary diagnosis, or more than one, if there's more than one primary problem. We do report, of all the encounters that we have, we report to the AHCCCS administration, which is then merged with their database, as well.
Well, I'll be happy to -- I can talk about this for hours. I'm sure you would not want to hear that. But, nonetheless, if there are questions about specialized managed care, we have to go on.
Second thing -- third is, clearly without -- I mean, we're not looking at comparing managed care with non-managed care. I mean, managed care is a fact of life, so when we talk about AHCCCS, we're talking about Medicaid. And so we use that as a surrogate for socially economic status. So when we're looking at health data sets, hopefully, we can know whether or not the individual was enrolled in AHCCCS, and so there's a surrogate then for their income status.
We do that in this state on our birth certificates, and we do report whether or not they are on Medicaid, on AHCCCS, as well as other payors.
DR. GREENEICH: Right.
DR. APPLEGATE: We include that in our hospital discharge database so, again, we can sort those based on economic status.
And we also have, in terms of fatality, again, my -- I'm a pediatrician, so my interests are with children. We have a very good child fatality review program. It reviews every single death of children under the age of 18. And one of the data big elements that we collect on that is their payor. So, again, we can -- although we don't have family income, we have a surrogate for that.
And, if we ever get access, as Diane says, if we can get access, that is spelled the usual way, with AHCCCS, the program, they also have rate codes --
DR. GREENEICH: Right.
DR. APPLEGATE: -- which tell you why they were eligible for AHCCCS, whether it would be because they were on TANIF, or because they were on SSI, or medically needy, medically indigent, you know, low-income, you know, there are, what, 21 codes or something.
DR. GREENEICH: Right. Exactly.
DR. APPLEGATE: Which would give us a further breakdown, in terms of income status, so I'm -- we think that would be a very useful data center.
But I guess the other -- and Diane talked about this -- I think there's great value in managed care from a public health perspective, because it gives us a handle on identifying a population. When you have a public health program that's population-wide, it's very hard to deal with.
DR. GREENEICH: Um-hum.
DR. APPLEGATE: And with managed care, you at least have subsets of the population.
DR. GREENEICH: Right.
DR. APPLEGATE: And you have some sort of a system to work with.
DR. GREENEICH: Um-hum.
DR. APPLEGATE: And it also gives you, once you have gathered data about the public health issue that you're concerned about, it gives you a point of entry for intervention.
And that's the other struggle that we've traditionally had in public health is, so what, you've got a great idea, how do you do anything about it? With a managed care organization, they have an infrastructure for dealing with their members, as well as with their providers.
DR. GREENEICH: Um-hum.
DR. APPLEGATE: And so whether the issue is patient education or provider education, you have a mechanism right within that organization to deal with that.
Two examples, in terms of the partnership that Diane alluded to, is that we -- probably the premier example we have is The Arizona Partnership for Infant Immunization, otherwise known as TAPII, it started several years ago, where we brought together public health -- county, local health agencies, Medicaid, that is, the AHCCCS, Medicaid Managed Care Plans, as well as commercial plans. And we had participation, I think, from all of the major commercial managed care plans, where, jointly, they agreed on assessing the status of two-year-olds, in terms of their immunization status.
Part of the problem was, that all of these plans were going into a doctor's office doing chart audits to see what their immunization status was, and then, of course, a single physician might be a member of several plans, and so we have several different organizations coming and auditing his charts. They finally said, hey, wait a minute, why don't we all get together, and we'll do one visit and share that data with all of our partners, and they did that. And it's been very effective. We have increased our immunization rate significantly, I think because of that initiative.
The other one, again, Diane mentioned, is the Asthma Coalition, who would like to use exactly that same approach, in terms of the partnership. Asthma in children is a major public health issue, how are we going to intervene with them, first identifying the kids, and then having some kind of a program. Again, it calls for both patient education, as well as provider education. I think managed care organizations are a perfect venue for that.
A couple of other things you did mention, I think in one of your questions, performance indicators and, was it GRPA, the Government Reporting Performance Act, or whatever, it is. And I don't know if you're familiar with the maternal and child health block grant, and that whole venue, but we do have -- we're moving towards agreement on a national set of performance indicators.
I think there's -- I think, obviously, Medicaid and Medicaid data will be one set, a source of data for those performance indicators. Again, there's a lot more information on that, if you want to go after it.
And one other just sort of final issue that popped into my mind, in terms of data, is the whole idea of national provider codes, and sharing data --
DR. GREENEICH: Right.
DR. APPLEGATE: -- across the state lines.
DR. GREENEICH: Right.
DR. APPLEGATE: I think of the health insurance portability, and I can't remember what the other "P" is, but --
MS. IEZZONI: And accountability.
DR. APPLEGATE: Something. But, at any rate, I think there's great value there, and if you have an opportunity for recommendations in that area, I think --
MS. IEZZONI: We're laughing, because we're actually written into the legislation --
DR. APPLEGATE: Good.
MS. IEZZONI: -- and we spend 90 percent of our time on that.
DR. APPLEGATE: Good. Good. Because I think we spend a lot of time trying to figure out just who was who.
MS. IEZZONI: Right.
DR. APPLEGATE: And with a common agreed upon provider identification, I think it will make life so much simpler.
One of the -- right back, and this is not in my outline but it popped up when we were talking about, one of the other values of managed care, and one of the programs that I work with is Newborn Screening. So we identify a baby in the hospital with a positive screen. We need to then find the family, find the physician, and do the diagnostic tests on them then.
Well, part of the problem, as you know, is the children are seen by a physician in the hospital who never sees them again. Well, what we have now is access to the Medicaid AHCCCS Program where we can identify, through their managed care plan who their primary care physician is, and we have a relatively direct contact, then, with the right person for follow-up.
So I think there's some great advantages of managed care, as well as -- when I go to my Medical Association meetings, of course, that's heresy, but I think there's promise.
Let me just stop there and respond to questions.
MS. IEZZONI: Okay. Thank you.
Members of the Committee? Who wants to start? How about you?
DR. AMARO: I was interested in pursuing a little bit more your comments about linkages and interface with public health, because it's an issue we've been talking about.
And I just had some questions, I wanted to make sure I'm understanding what you're saying. Are you thinking of a model where managed care providers are reimbursed for carrying out prevention or traditional public health functions?
DR. APPLEGATE: Well, that could be part of it. No, I think what we're saying is, within the managed care structure, and the services that they provide, is an opportunity for public health intervention.
DR. AMARO: Oh, okay. Sure.
DR. APPLEGATE: Because it's in their best interest, as well. We've done this with diabetes, we've done this with immunizations, we're doing this with asthma. And those are big issues for them, as well.
DR. AMARO: Uh-huh.
DR. APPLEGATE: And so what we're saying is, let's get together in a partnership.
DR. GREENEICH: Right.
DR. AMARO: Yeah. It seems, from a little bit of reading that we were provided for background, that a lot of that may not be going on. We don't know how much is going on, whether here, or in other places --
DR. APPLEGATE: Well, I can --
DR. AMARO: -- whether that providers have been motivated to do that, especially when you think about the average time of plan membership, you know, and the changes in --
DR. APPLEGATE: Well, you know, that's a -- in fact, I was just at a meeting this morning, and somebody was saying, well, you know, the plans don't care, because they only have a member for a year. I think that's changing. I think that -- the feeling that I get now is that they realize they're in this for the long haul --
DR. AMARO: Right.
DR. APPLEGATE: -- whether they're enrolled in their plan --
DR. AMARO: Right.
DR. APPLEGATE: -- or somebody else's plan, they may be back with them by the time --
DR. AMARO: Right. That is true.
DR. APPLEGATE: -- they need an intervention.
DR. AMARO: That's true.
DR. APPLEGATE: So I don't think they're saying now, I'm not going to pay for prevention, because I'm not going to save money. I may not be --
DR. AMARO: So that your sense is that that's changing.
DR. APPLEGATE: I think it is.
DR. AMARO: Right. Right.
DR. LOCKHART: Let me make a comment on that, though. I think it's changing in those areas where you have stable systems. Managed care organizations are not like managed care organizations, are not like managed care organizations, you have to look at the longevity of the organization, how long it has survived as an entity, itself, how long the system has survived.
And one of the things in the new systems that come up, is everybody wants to get members, turn members, if they can, claim members, and get the right members, but then also sell their plan, if they can, and get out and make some money, so that you have to look at the longevity.
And one of the things I always talk to people about is, if you're going to make a choice, pick a plan or a company, even if it's relatively new in terms of doing Medicaid Managed Care, that has some history in your state. And so that I think those plans that have history, that have roots in a community, they may not do it all right -- the right -- at the beginning, but they will work and then begin to have a commitment to that local community, because they are part of it.
And I think that's a piece of what we have to be aware of, is that some of the mechanisms have been put in place for new plans to be created with little capitalization, and so forth, simply to respond and get into the market. We bring in new plans, but they don't have that kind of commitment. So, working with a Kaiser, a CIGNA, and others that are in the market, and then decide to go into this group, is very different than working with some of the plans that come in and have no ties to the community.
DR. GREENEICH: And I think I would like to second what she's saying, just based on my experience at AHCCCS, especially in the rural communities, that they very much were focused on what needed to be done for people who live in the community.
DR. AMARO: Are the current data systems able to provide information on the extent to which prevention work is being integrated?
DR. GREENEICH: It depends on the data system. I think one of the best data systems in the state of Arizona, is a small rural health plan that has a PCP based data system, so it depends.
DR. APPLEGATE: Yeah, I mean, for instance, with asthma and diabetes, the first question he has, you know, is which of our members have that diagnosis?
DR. GREENEICH: Right. Right.
DR. APPLEGATE: You know, that's a tough question, and it's not easy to get at.
DR. GREENEICH: No, it's not. It's not.
DR. APPLEGATE: And so, there's a ways to go.
DR. AMARO: And so that would be a priority, is that you would identify the --
DR. GREENEICH: Right.
DR. APPLEGATE: Yes.
DR. AMARO: Okay.
DR. LOCKHART: I would just add to that. I was recently doing some work with our local Hospice, and one of the things we found in identifying asthma, or anything else, this is including Medicaid Managed Care plans, they were unable to identify categories of patients, say, VHF, cancer, and so forth, and then, say, what was happening to them as they were going through the death process, you know, what kind of services they got, how long they were in the hospital, and so forth, so that we have isolated data points.
But we don't have things linking together, and we don't have the pharmacy link so that we know what services they're getting and how often they come in, is it a readmission, and that kind of stuff. It's too often just isolated pieces.
DR. APPLEGATE: I mean, in order for us to establish a primary diagnosis for a child in our system, somebody, a clinical person had to sit down with the medical record --
DR. GREENEICH: Right.
DR. APPLEGATE: -- and say -- synthesize that and say -- and then fill out a form. And you couldn't do it in medical records.
DR. GREENEICH: Right. That's true.
DR. APPLEGATE: So, and that's a process that's missing in many systems. It's difficult.
MS. IEZZONI: Kathy.
MS. COLTIN: I think you talked about some of the problems with linking data, and I'm curious whether you've thought about the impact of the carve-outs on fractionating the data?
I mean, one of the things that we see, is that, take the mental health area as an example. If the State decides to carve out mental health, then you've got that data somewhere in the data repository for the vendor, the carve-out vendor, and then you've got primary care data and other data in the MCO's data repository.
If you then wanted to try to bring the two together, you would come up against a data linkage issue, and various confidentiality restrictions come into play; whereas, if you didn't have a carve-out and it was all in one system, like if the MCO had that benefit, the data could be linked at that level --
DR. APPLEGATE: Well, you see, but you can turn that around the other perspective. All of the children with special health care needs are in one system. Their primary care may be in a dozen different MCOs. And all of the kids with special health care needs, not only Medicaid eligible, but non-Medicaid eligible. We accept kids, regardless of income. Now, they have to pay over a certain level.
For instance, every single child with spine bifida is in our system, regardless of who their payor is. And so all of the data about those children is in one location; whereas, otherwise, they could be enrolled in one of dozens of MCOs.
So it depends on the perspective that you're coming from. But I really, I think there's a great problem with the disconnect between primary care and specialized care.
MS. GREENEICH: Right.
DR. APPLEGATE: The solution, obviously, my biased opinion, is to bring the primary care in with the specialized care, rather than the other way around.
But, in terms of data linkage, it's less of a concern, because for Medicaid, they all have the same Medicaid identifier. And so all of our encounter data is shipped monthly over to the AHCCCS administration and incorporated into their database.
DR. GREENEICH: May I comment on that? That's true. But at the same time, before I left AHCCCS, we needed to do -- we did a big study on inethicacy of a drug that utilized their database. And it wasn't easy to get the data, and we ended up having to have special reports run.
So there's a very good example of the kind of issues that even though we're in the same system, we still have problems.
MS. ARAKI: Was the issue because of confidentiality, possible breaches of confidentiality, you couldn't get AHCCCS information?
DR. GREENEICH: No. The issue had to do with the data and how it was linked and how it comes across into the system, and the kind of data that I needed to get for the study was not -- I was not able to get it through our big PMMIS system, so I had to go directly to CRF's to get it.
MS. ARAKI: So the incompatible systems --
DR. APPLEGATE: So the data was actually in the specialized side of the --
DR. GREENEICH: Right. So that's a good example of the aggravation that you have to go through.
MS. IEZZONI: Don.
MR. DETMER: Yeah, I enjoyed all these presentations. But, I wanted to pick up on one of your comments about the definitional issues, especially, and the value of functional status, if you can find a way to pre-objectively track that.
I'm not familiar with the six-point issue, or approach that you talked about, and I guess one of the other -
DR. GREENEICH: Well, I think --
MR. DETMER: Two questions. Actually, one, how you feel about that; but, two, does that shift with age, too? I mean, it seems to me like, you know, depending on the child's age -- I'd just like to hear you talk about that.
DR. APPLEGATE: Well, yeah. Essentially what they've done, and there are other systems that do something similar to this, and, in fact, had we not elected a certain governor a while ago, we would have had a system in place --
MS. IEZZONI: Can you be more specific about that?
DR. APPLEGATE: It's old history, but it still hurts. -- that we -- and I have to be careful, because I don't want to mischaracterize WEEFIMS.
But, essentially, you look at various domains, whether it be ambulation, or intensive care, or whatever it is, and then you grade them on a scale that says they have no impairment, to a minimal, to moderate, to major, to severe, et cetera. And so that if you --
MR. DETMER: These are quite objective, in terms of DR. APPLEGATE: Yeah, as best as you can do, but it's still a clinical decision.
MR. DETMER: That's the tricky part of it.
DR. APPLEGATE: That's absolutely the tricky part. And you don't get it by just running it through a computer. I mean, you have to have --
MR. DETMER: Yeah, it seems --
DR. APPLEGATE: -- it's a clinical assessment that somebody has to make that. But it doesn't have -- the hurdle that we have, is that you don't have to have a physical therapist make the determination about ambulation, and a social worker make the determination about social functioning, and a nurse make the decision about what's a bowel and bladder. You know, I mean, I think what we pronounce, we can do that at a lower level.
MS. IEZZONI: Actually, Don, FIMS for the adults, the functional independence measure for the adults is part of a proposed perspective payment system for rehabilitation hospitals called function-related groups that HCFA is now debating about, and will hopefully be one of the things that we'll hear about at our March 2nd meeting.
DR. APPLEGATE: And OREX.
MS. IEZZONI: OREX. That's the Joint Commission --
DR. APPLEGATE: Yeah, the Joint Commission requires some -- and WEE -- and FIMS or WEEFIMS is one of those that will meet the large requirement. And so our providers are very interested in that. So --
MR. DETMER: Well, I like it conceptually very much. It's a question of operation within --
DR. APPLEGATE: Well, I mean, I've been harping on this for, you know, 15 years, so, again, we're slowly beginning to get there.
What would be nice, is if we had some sort of national agreement on it. I don't think we're there yet.
MS. IEZZONI: Well, we heard a very eloquent presentation this morning, though, from Betsy Trombino, from Arizona Family Voice, talking about her son, who's now 28 years old, who had been a child with special needs, and is now an adult.
But she spoke very eloquently about concerns on the part of parents about revealing everything about the health of their child, including their functional assessment, even though there would be a guarantee, virtually, that this data wouldn't be used to harm the child, that it would be held confidential, that it would never, in any way, cause a breach in the insurance.
Still, I think parents might be very concerned about having this kind of assessment done of their child, especially in the context of health insurance, or a payment system. So have you talked through with the parents and families how these data are going to be used, collected, how willing people are going to be to have that kind of functional assessment done on their child?
DR. APPLEGATE: Yeah. No, it's -- you're absolutely right; and, yes, we do -- we have a cadre of parents on contract, and parents sit on all of our policy committees, and we pay them. If everybody else around the table is getting paid, why shouldn't the parent get paid, as well. And try to grapple with that.
And we have the same issue with a single application for services across multiple programs. While it makes sense, from an efficiency perspective, the parents say, "Why do I have to fill this form out 16 different times?" But then on the other they say, "But I don't want to share my medical history for your program with somebody else's program."
MS. IEZZONI: Yeah, see, here's --
DR. APPLEGATE: And so, it's a dilemma that no one has resolved yet.
MS. IEZZONI: How are you thinking about resolving it, because we heard very eloquently, again, from Mrs. Trombino, that there are some people who, every 30 to 60 days, are having to fill out a different form?
DR. APPLEGATE: I think if we -- one of the ways we're going down, is we've sort of settled on a basic demographic profile that will fit everybody's basic input. But then everybody has program-specific eligibility requirements, and that may be an addendum, and not try to put all of that kind of information into a single database.
So they wouldn't fill out the entire application, but they would fill out the second part that related -- that was specific to that particular program. And then we may just have to leave it up to the family to say do you want a single application, or do you want multiple applications, and let them decide.
MS. IEZZONI: George, don't you want to ask about encounter data?
MR. VAN AMBURG: No, I'm more interested in the comments, and you've all kind of intimated, that it's difficult to get access to the data for analysis. And I wonder if you would comment a little bit more about that, and what you think the solutions are.
DR. GREENEICH: Well, one of -- I think one of the solutions is a national standard and a national database. One of the real problems, I think, no matter if you're doing HEDIS measurement, or you're doing studies within agencies, and you're a consultant, such as I am, doing studies for managed care plans or government agencies, that you are constantly confronted by the lack of really good data to work with, and that's one of the issues that I see that the federal government needs to have standards.
The other thing that I alluded to, the study that brought me into Sundin's domain was his data, and I think that's the second issue, is that the dialogue and the discussions that we've had have facilitated really understanding how best to get our data.
I do not believe financial data was ever meant to be used for research, but from one who has spent hours in financial data, I think that we need to have better ways of working it, as well as better dialogues about systems and evaluation, and how they need to articulate and work together for what we're going to be doing.
Anything you'd like to add?
DR. APPLEGATE: Yeah. Well, you know, I think the answers are there; the will has to be present to make it work. And people throw up confidentiality, and all of that, and that's just a bunch of bull. I mean, you know, if they really are serious, you can do it. But if they don't want to do it, they can find a thousand reasons why they cannot do it.
And I don't know that it needs a federal mandate to resolve that. It might help, I guess. I mean, and you --
DR. LOCKHART: But, can I comment, too?
DR. APPLEGATE: Go ahead.
DR. LOCKHART: I'm more along the line of Sundin, maybe it's because we've both been regulators, I don't know. But, the other thing is, it is difficult to access the data, and certainly to get comparable data, too.
But, one of the things I do is serve on a State Data Advisory Committee, and even getting hospitals, and nursing homes, and everybody to comply with their UB-92s, and everything else, or something, is very difficult. And for all that it would be good to have some standardization, which I fully support, I think the other thing I see, having been on the PPRC, is that we get a little carried away with the fact that we can either count it or collect it.
And I would be very concerned, and would suggest that you be cautious, that just because you can do it, don't do it. Think about whether it's really necessary. PPRC tried to create a perfect market, simulate a perfect market. We rearranged the chairs on the Titanic a lot, and they're still doing it, but we still didn't create a perfect market. And you may be trying to create a perfect data system. You're not going to do it.
So, I would suggest, there is some standardization that really is necessary. There's some things that I think are better done within the plan, or at the State level. They can be responsive and change more quickly. It's very difficult for you to sort out, I realize that. But, because of our technology, I think we get a little carried away sometimes that we can do all of this, and I really would ask you to be cautious.
MR. VAN AMBURG: Sundin, you feed data into the AHCCCS system on your program. What do you get back? I'm trying to be a politic here.
DR. GREENEICH: Yeah, right.
DR. APPLEGATE: Not a lot. In fact, we were just talking the other day. You know, we wanted to have another program have direct link to their data set so that we could do some clinical follow up, and we have to jump through an incredible number of hoops in order to do that.
DR. GREENEICH: Right.
DR. APPLEGATE: You know, I think we've actually been much more successful in working with individual plans. We have a couple of pilot programs. I was talking about integrating primary care. So, down in Tucson, we've worked with two of the major Medicaid Managed Care plans down there who are very interested in this, and they have shared at that level, and that's actually been very successful.
MR. DETMER: I share your views that managed care does give us some opportunities to start just aggregating some of the public health leverage points.
And it seems to me one of our biggest challenges is policy perspective, or putting in incentives that not only being an individual health improvement, are also population improvements, and being able to both measure, essentially, the health status of that population.
So, in fact, are they in a position to actually gain gains that are not, you know, likely --
DR. APPLEGATE: Um-hum.
MR. DETMER: -- what it costs, and it seems to me where some this cutting edge in health services research seems to be.
But, I just would like to hear you talk a little bit more around that, because it seems to me, when you look at what we spend as a national initiative for health services, it's enormous, and what we gain from that --
DR. APPLEGATE: Um-hum.
MR. DETMER: -- designs -- the denominator assessments are not what they ought to be, and it seems to me like probably one of the richest potential areas for improvement in our health care system nationally, because it's probably going to be a set of systems. It's not likely going to be the system.
DR. APPLEGATE: The trouble --
MR. DETMER: Can you kind of reflect on that a little?
DR. APPLEGATE: Let me respond, if I may.
MR. DETMER: Yeah.
DR. APPLEGATE: I think the trouble in tracking long-term outcome is this affordability problem.
MR. DETMER: Yeah.
DR. APPLEGATE: And the fact that people change providers, change systems. And so if you want -- you know, in the aggregate it makes sense to say if we have a prevention program here, we're going to have -- we hope to show an improved outcome. But if you want to look at outcomes for individuals, then you're going to be able to keep track of the cross-various systems.
DR. GREENEICH: Right.
DR. APPLEGATE: And I think that's a challenge, and I don't know the answer to that one.
DR. GREENEICH: Well, I would like to share, I think that looking at different service delivery models, and it's very important, one of the last studies I did at AHCCCS had to do with a chronic population and the ethicacy of a drug being given. And I was very surprised at the findings, and how the agency used those findings to really make decisions.
I think that we need to spend more time looking at specific populations and how we can more effectively and efficiently serve them.
MS. IEZZONI: Diane, can you be more specific about that, or is it confidential?
DR. GREENEICH: It's confidential, but I --
MS. IEZZONI: Oh, okay.
DR. GREENEICH: -- but I think that's, to your answer your question, that's where the money needs to be spent, because it really showed the differences, what worked, what didn't work, and maybe what could be done differently in those two populations next time with the same diagnosis.
MR. DETMER: That's right where I'm thinking.
DR. LOCKHART: Did you want to follow up on that?
MS. IEZZONI: No, go ahead.
DR. LOCKHART: Okay. One of the concerns, I think, is that for all of us that would really like to push a public health agenda, and a better agenda for populations, which I agree, I think managed care gives us that option, I think that the reality is, that most of these Medicaid Managed Care Programs have been created to control costs. They have not been created to really do anything with health care -- I mean, deliver it, but not change health care status, actually, neither was insurance.
So, I think one of the things that I see, and I don't know how you do it exactly, but in those states where there is an executive and legislative commitment to positive health for the citizens, and there are some, you know, Wisconsin, Oregon, some others, I think, do some very innovative things.
MR. DETMER: Yeah.
DR. LOCKHART: And built into the design of their systems, things that then say you are rewarded for certain behaviors.
DR. APPLEGATE: Right.
MS. IEZZONI: Right.
DR. LOCKHART: One of the things Florida did not do in its managed care contracts was, they have no effective review process, data being present or absent, it didn't matter. They simply renewed contracts. They never looked at what happened to the populations within those plans.
There's some change in that now, but I think that the managed care -- the Medicaid Managed Care Programs have a very real ability to set some very clear agendas about when you take care of our population, which you can define, and it's very large, we expect certain things to happen. You know, they will get prenatal care and we'll see certain things, some of the HEDIS measures, whatever, but that -- and if you don't reach it, there are consequences.
There's a reward if you do it, and we maybe gave you a few more patients, or whatever it might be, a reward that would be attractive, or a better price, whatever, and there's a sanction if you don't. But you just don't get another contract if you haven't done something.
And I have not seen enough of that done, and I think that is probably one of the best ways we could build in public health agendas for populations, is if the fiduciary agent didn't act just like a fiduciary agent and just pass through the money.
DR. APPLEGATE: Um-hum.
MS. IEZZONI: Hortensia.
DR. AMARO: I had a couple of issues that I wanted to continue to discuss. You know, I agree that this should be a goal, but I wonder how prepared or appropriate the personnel are, because the kind of services that we're talking about that would be traditionally provided by local health departments, have used a very different profile of workers than health plans use.
And there have been priorities placed on being able to speak the language of the community, having culturally and linguistically relevant materials, really knowing community resources, doing, you know, outreach, street-based outreach, community-based outreach, so that the model of public health is quite different than the models in medical care.
And it would really require, I think, it's not that I'm opposed to it, but I think it would require a lot of changes in integration or expansion of the model within it.
But going back to the issue of data, one of my concerns is how well we can capture, as we look at whether certain goals are being met with certain populations, especially if you're talking about outcome.
But even other things, like receipt of, you know, adequate prenatal care administrations, which often aren't only the result of the work of a plan, but also the of work public health programs locally. And so if you don't have that information in your data sets, how can you attribute, you know, whatever the outcomes are to that source.
And those are some examples, but another one that's very clear, for example, if you're looking at patients with AIDS, and substance abuse treatment of mental health services, are not covered sufficiently, or only minimally. We understand that behavioral health, for example, for individuals 22 to 65, are not covered --
DR. APPLEGATE: They're not.
DR. AMARO: Huh?
DR. APPLEGATE: They are.
DR. AMARO: Okay. This morning we heard they weren't, so I'm not clear.
DR. GREENEICH: Yeah.
DR. AMARO: Yes, they are?
DR. GREENEICH: Yes, they're covered at, but as --
DR. APPLEGATE: But --
DR. GREENEICH: But, go ahead.
DR. APPLEGATE: -- but, again, I hate to you the "C" word, but it's a carve-out.
DR. GREENEICH: Right. Right.
DR. APPLEGATE: All of the confusion is, because we entered with a whole slew of waivers that we sort of did away with piecemeal, is that things came along in parts, in terms of how AHCCCS evolved, so we added children zero to eighteen under EPSDT for mental health care, and then we added nineteen and above --
DR. GREENEICH: Right.
DR. APPLEGATE: -- for mental health care, both of which were provided by the State behavioral health system. But through a quirk, 19 to 21 is not, and so they are included in the managed care plan --
DR. GREENEICH: Right.
DR. AMARO: And is substance abuse treatment also provided, then, in that carve-out?
DR. APPLEGATE: Yes.
DR. AMARO: Okay. Well, in most states, okay? In most states. And I have to look closely at what's covered, because that's the other issue, you know, is that oftentimes that what's covered is so minimal for mental health and substance abuse, that you really are left with an incredible need, still.
But, in most states, substance abuse services are only minimally covered, like detox and, you know, very extreme needs for short-term residential, you know, or psychiatric care. And the rest is covered, at least in substance abuse, through the federal block grant, so that you have this sort of parallel system saying substance abuse that's not -- that's within the Department of Public Health and community agency that's not where the bulk, especially for the population we're talking about, of substance abuse treatment, takes place outside of the system that we're going to be gathering data in.
Yet, the availability and receipt and quality of substance abuse treatment is very relevant for outcomes with somebody with AIDS who is, for example, an injection drug user, and whose chances for improvement are absolutely related to that, but, yet, we wouldn't capture any of that.
DR. APPLEGATE: Well, this is sort of the pro-carve-out argument. And part of the problem is because eligibility for Medicaid waxes and wanes with changes in your income, people are eligible one time and not another.
DR. GREENEICH: Right. That's right.
DR. AMARO: Yes, that's right.
DR. APPLEGATE: And so the pro-carve-out folks say, if we have the same service system, then it doesn't matter. Again, in the program I know, CRS, it's absolutely transparent to the families whether or not they're on Medicaid or not, they're receiving exactly the same services for their children. Because, at one point we bill Medicaid, and one point we bill our State budget.
DR. AMARO: Right.
DR. APPLEGATE: But the services that they get are exactly the same. And that's what happens to a greater or lesser extent in behavioral health.
DR. AMARO: Right.
DR. APPLEGATE: The problem in behavioral health, is that monies got sucked away, the State monies got sucked away in matching for Title 19, that there was far less money available for non-Medicaid eligible clients.
So if you are Medicaid eligible, you can receive more services. You're entitled to services.
DR. AMARO: Right.
DR. APPLEGATE: Whereas, once you go off Medicaid, then you're sort of in the que in terms of what's available in the budget, but the provider system is the same. And so, if you are enrolled, if you're signed up with the substance abuse counseling service, it doesn't matter whether you're being paid for by the Medicaid route, or being paid for by the non-Medicaid route, it's the same system.
MS. IEZZONI: Yeah, that's true.
DR. AMARO: Let me just say a little bit more about that, because I'm still concerned. For example, I have two substance abuse treatment programs. During -- while women are pregnant, you know, the "X" number of visits that we can get Medicaid --
DR. APPLEGATE: Uh-huh.
DR. AMARO: -- reimbursement for, and after that, that's it.
So, where do they go for -- they end up going to -- they actually could end up being in the same program, but it's paid for in a different way, so they no longer will appear, you know, we wouldn't have to hand in any information related to them because they would no longer be being paid -- their services wouldn't be paid through Medicaid.
Or, if we had contracted the managed care company to provide this service and then, you know, there's only "X" number of visits allowed after that, they end up up being reimbursed through the State system of care which, you know, the money flows from the block grants.
So, my concern is, that in those two areas, mental health and substance abuse, because usually the services are so limited, what's approved, that, actually, people end up going -- you know, getting services through another system, and we wouldn't be able to capture that in any --
DR. APPLEGATE: But I guess the point that I'm not making very clearly, is that that's irrespective of managed care. There's a single behavioral health system, whether it's for Title 19 or not.
DR. AMARO: Yes. Yes, it is irrespective of managed care.
DR. APPLEGATE: Right.
DR. AMARO: But when we go to answer questions, because these populations rely --
DR. APPLEGATE: Oh.
DR. AMARO: -- a lot of these, and community agencies, et cetera, that we would come to -- we would have an incomplete picture, because they are over-representing people who rely in those sort of systems of care that are outside of what's being counted.
DR. APPLEGATE: Well, and that's true. And I don't -- although behavioral health is in the Department of Health, it's in another whole area.
DR. AMARO: Right.
DR. APPLEGATE: And so I don't --
MS. IEZZONI: Yes?
DR. APPLEGATE: -- pretend to answer for that, but --
DR. AMARO: Yeah.
DR. APPLEGATE: -- and it's simply a limitation of funds, in general.
I don't know, you know, how much you know about the recent history of behavioral health in Arizona. But the major managed care provider for behavioral health in this county went bankrupt.
DR. AMARO: Right.
DR. APPLEGATE: It's under-funded.
DR. AMARO: That's right.
DR. APPLEGATE: And, so, yes, that's a problem, and I don't begin to have an answer to that.
MS. IEZZONI: Yes, that's true.
Yes, Carol.
DR. LOCKHART: I wanted to comment a little bit about the question relating to public health. I would go back, again, to the contractual demands that the Medicaid agency can put into its agreements.
MS. IEZZONI: Right.
DR. LOCKHART: There is no reason you cannot specify, which some do, you know, that you put culturally appropriate translation, and so forth. Again, we have to begin to understand that in a Medicaid Managed Care world, it's a little different. And the agency has to specify what it wants, just like it did with community providers, but do it in a contractual way, and so that we can specify that this is what they need to do.
The other thing is, I think that some of the more stable plans are, I think as Sundin mentioned, beginning to look much more at prevention, and so forth, and they're turning to public health providers and saying, "Can you teach us?" And I think, you know, public health struggles sometimes for its identity.
That is certainly a role it could play to help managed care begin to understand how to respond to the public health needs of populations, and the broader needs of populations, so that I think that we really have an opportunity to move forward on that.
And I'm blanking on the title of the project, but Ross Lasker ran the project out of New York for the medical society -- medical association and public health, talking about how you blink, and how you help the individual physician look from the individual and out more broadly, and how you help the public health community look from the broader scope into the individual.
And I think that they did some nice work in that project, and it's something that you all may want to take a look at --
MS. IEZZONI: That's a good idea.
DR. LOCKHART: -- relating to that.
MR. DETMER: I think it's an excellent idea, because I've seen --
MS IEZZONI: Yeah. We should maybe have Ross Lasker come --
MR. DETMER: And I don't think there's any question we've overly emphasized the medical model, and as you're really talking about this, you're talking about a change in mix --
DR. LOCKHART: That's right.
MR. DETMER: -- in your strategies, and ultimately --
MS. IEZZONI: Right.
MR. DETMER: -- there's a lot of different systems out there.
DR. APPLEGATE: Well, I mean --
MS. IEZZONI: Um-hum.
DR. LOCKHART: Right. And the potential.
MR. DETMER: But some of the people receive health care --
DR. LOCKHART: Right.
MR. DETMER: -- rather than medical practice. So --
DR. LOCKHART: That's right. And responding to both needs.
MR. DETMER: Yeah, exactly.
MS. IEZZONI: Um-hum.
DR. APPLEGATE: Public health agencies across the country are trying to figure out what they're going to do. And, you know, the local Health Department in this county decided to become a Medicaid provider.
DR. GREENEICH: Right.
DR. AMARO: And I think that, you know, while the scope of our work is supposed to be to look at how do we -- you know, the recommendations we can make for better data systems, but as we go to answer that, all of these other issues, you know, intersect because --
MS. IEZZONI: Right. Exactly.
DR. APPLEGATE: Uh-huh.
DR. AMARO: -- they're facing us, you know, they're right in our faces, and they haven't been adequately addressed, and so we're forced to, you know, make it even more complicated, because if we're looking toward what we should have in the future, as opposed to what we can get with the current system, we need to be able to think ahead a little bit more about the changing nature of health care and how public health would really be a bigger and more integrated part of that.
DR. APPLEGATE: I mean, when AHCCCS started, all the county health departments ran well baby clinics, and prenatal clinics, and family planning clinics, and many of you shut those down.
DR. AMARO: Yeah.
DR. APPLEGATE: And then they discovered that there was still an unmet need out there.
MS. IEZZONI: And what did they do?
DR. APPLEGATE: Well, they've slowly started setting them back up again.
DR. LOCKHART: But, I mean, part of the unmet need happened because the State did not put the appropriate demands on the managed care organizations that were providing care.
DR. AMARO: Yes.
DR. APPLEGATE: Um-hum.
DR. LOCKHART: Some of that has begun to change with TAPII, and some of the other efforts to say, you know, immunizations are still important guys, and those kinds of things. But, you know, the agency has to be willing to make the appropriate kind of demands and have the support to do that. Because it's much easier to say no, no, you're stepping on toes, we don't want you to do that, and they really need the support to be able to say you will lose the contract unless you respond.
MS. IEZZONI: Right.
DR. AMARO: So, Dr. Applegate, my last question. Today in the Health Department, and I work closely with both my State and my City Health Departments, what do you think about the need to develop some kind of data system to really track the services received by people from public health, you know, public health services receive, so that either we can link those more closely, or document the extent to which they're contributing to changes in the health of a population?
DR. APPLEGATE: Well, there would be two levels. One is the very traditional sort of infectious disease, you know, the STD, that sort of stuff, and I can --
DR. AMARO: No. I'm talking about sort of encounter --
DR. APPLEGATE: Yeah. That's where I think that the opportunity is there to work with managed care.
DR. AMARO: Um-hum.
DR. APPLEGATE: We just have to learn how to do things differently now. But I think there's a real opportunity there, if we can figure it out, to actually do things better, and that's what we're working on. But it's a reorientation for local health agencies.
DR. AMARO: Yes.
DR. APPLEGATE: They're used to doing it themselves, and now they have to work with their partners.
DR. GREENEICH: At AHCCCS, we developed developmental disability indicators, and we did work with DHS in bringing our data systems together, which was no mean feat. And I think that that's -- what you're speaking to will occur as we work more on indicators and have more dialogue.
MS. IEZZONI: Elizabeth.
MS. WARD: Picking up on the -- is that an example of what you were trying to say earlier about your minimum data set, that if you had -- were spending less time and less money on a database this big --
DR. GREENEICH: Right.
MS. WARD: -- and on a database this big, that then you would have --
DR. GREENEICH: Right. Exactly.
MS. WARD: -- more time, money, and people on effort --
DR. GREENEICH: Right.
MS. WARD: -- to do the special kinds of things as they came along?
DR. GREENEICH: Exactly. Because it took us a long time to really learn to speak each other's language. And, finally, one day, the AHCCCS contingent just went over to DHS, and we looked at the databases, and we understood where they were coming from and where we were coming from, and we were able to solve the problem. But that is exactly what I'm talking about.
MS. IEZZONI: George.
MR. VAN AMBURG: You made some recommendations for a minimum encounter data set.
DR. GREENEICH: Yes.
MR. VAN AMBURG: But that really is not worthwhile unless you can look into an eligibility or enrollment file --
DR. GREENEICH: That's true.
MR. VAN AMBURG: -- some basic information. Do you have recommendations on what should be in that file?
DR. GREENEICH: Yes. I did not bring those, but I do, and I think that's another critical issue, the enrollment file.
MS. IEZZONI: Yeah.
MR. VAN AMBURG: Could you send those to the Committee?
DR. GREENEICH: Yes. I'd be happy to, if you give me your business card afterwards.
MS. IEZZONI: As Dr. Applegate mentioned, HIPPA, the Health Insurance Portability and Accountability Act, and what our Committee has been spending a huge amount of time on, is coming up with data standards for various transactions.
Kathy, you might be the member of the Committee who might know what is in the encounter forms, the best. Have you had a chance to look at the recommendations? Because the HIPPA provisions actually apply to all health care transactions for the --
MS. COLTIN: Right.
MS. IEZZONI: -- designated types within the country, not just Medicare, and not just federal, but apply to everybody.
And, is that something that you in Arizona are aware of and working towards, realizing that you are going to HIPPA mandates, follow certain standards that will be promulgated by the federal government about these kind of transaction data sets?
MS. COLTIN: Just looking at the --
MS. IEZZONI: Yeah, the proposal for the minimum.
MS. COLTIN: Yeah. I don't see anything on here that isn't either in the data set, or could be derived from the data set. So, for instance, I'm not certain that big supply of the drug is there, but if the quantity dispensed and the dosage is there, you can calculate the day's supplies.
So, you know, you can get at these, whether it's a derived data element, or an actual raw data element.
MS. IEZZONI: Good. I think, though, it is an important question about whether this is something that the State is gearing up for, and the health plans. We heard this morning from Mary Temm that there are some wonderful health plans, I think, and Betsy, you referred to it, that maybe have four or five hundred clients out in the rural areas.
MS. TROMBINO: Yes.
MS. IEZZONI: Is this something that your State folks are aware of and gearing up towards, including the smaller health plans, the standardizations that are going to be coming down from the HIPPA mandates?
DR. APPLEGATE: I can tell you, from my perspective, no. But, I'm sure there are those who are.
DR. GREENEICH: Right.
DR. APPLEGATE: So, like it's not widespread.
DR. GREENEICH: Right.
MS. IEZZONI: Um-hum.
DR. APPLEGATE: Let me put it that way.
DR. LOCKHART: Yeah. And some of that would be at the DHS regulatory arms --
DR. GREENEICH: Right. Right.
DR. LOCKHART: -- and data collection folks, and they're aware of it. I think everybody's sort of waiting to see what's coming.
DR. GREENEICH: What happens.
MS. IEZZONI: Well, I think it's getting pretty close, isn't it, Don --
MR. DETMER: Yeah.
MS. IEZZONI: -- in terms of being able to suggest what the transaction standards are?
MR. DETMER: Oh, yeah. Yeah.
DR. LOCKHART: They review those regularly, and from thinking of some of the other data -- I mean --
MS. IEZZONI: Well, actually, Carol, the context of my question is, that we are afraid that people are not aware of it.
And so my question was loaded, in a sense, that I expected you to say no, and we would not have been at all surprised about that. There may -- there probably are, as you say, people in the State who aren't gearing up for it, but our observation is that a lot of people don't really realize that this is coming down the pipe at them.
DR. LOCKHART: It's probably two or three people that know about it --
MS. IEZZONI: Yes.
DR. LOCKHART: -- and are working in the specific area.
MS. IEZZONI: Right. Then the 400 people that --
DR. LOCKHART: And I think it is not the broader group.
DR. GREENEICH: Right. That's true.
MS. IEZZONI: Yeah. Okay. How about the Balanced Budget Act? It had a number of provisions for Medicaid data, Medicare data, encounter forms.
DR. APPLEGATE: We're much more interested in child health insurance.
MS. IEZZONI: Okay. Yes, I can understand why you would be. But, do you hear any scuttlebutt around the State around the Balanced Budget Act and the implications of that for data systems?
DR. GREENEICH: I think that people are aware of it. And, certainly, one of the meetings I just attended last week was on skilled nursing facilities. And I think they're really getting a wake-up call, as far as data, what they're going to do.
MS. IEZZONI: We're after 3:00 o'clock. Dale.
MR. HITCHCOCK: Just following up on the last question about knowledge and awareness of the HIPPA, there is a really good Web site that people have put together, and I wish I had the URL for it, I don't, it's called an FS simplification that reviews all the activities, especially that --
MR. DETMER: I think I know what it is.
MR. HITCHCOCK: Yeah.
MR. DETMER: It's s-t-t-p, go on, slash, slash, o-s-p-e-o-s, dot.
MS. ARAKI: Dot, d-h --
MR. DETMER: -- o-s dot, d-h-h-s, dot, g-o-b, slash, a-d-m-i-n, slash, a-p-l, slash --
MS. IEZZONI: And that's further than, you need to
identify everything.
MS. ARAKI: It's the same --
MR. DETMER: That's what it is.
MS. ARAKI: It's the same Web site as our national committee address, except instead of n-c-v-h-s, you do admin sim, without -- it's a-d-m-n-s-i-m.
[ Correct addresses are: http://aspe.os.dhhs.gov/admnsimp/ and http://aspe.os.dhhs.gov/ncvhs/ ]
MS. IEZZONI: I think we need --
MS. ARAKI: But we can definitely send that out to you.
MS. IEZZONI: Yeah. And to the extent that you can, just let us know whether this is an issue for you, in terms of educating colleagues about HIPPA. That would be helpful for us to know, because it's been something that we've been concerned about, how widespread the knowledge is about this, these standards that are going to be hitting you in the face, in what year, Don?
MR. DETMER: Well, some of them have already started.
MS. IEZZONI: Yeah.
MS. ARAKI: Sixty to -- I think in a matter of weeks --
MS. IEZZONI: Right. Weeks, exactly.
MS. ARAKI: -- we're anticipating at least two of those --
MR. DETMER: Yeah, provided that --
MS. ARAKI: -- notices to be --
MS. IEZZONI: Exactly. Noticing facilities to start.
Okay, from the audience, a comment?
MR. HALL: I just have a quick comment. I agree with Dr. Lockhart, that when we're talking about Medicaid Managed Care, that's a completely different animal than just standard commercial managed care.
One of the things that I think is very important to keep in mind when we're talking about collecting data, there are a lot of partnerships that have to happen in order to collect this data. One of the partners in this is the commercial health plans. We need to understand that. They're not going into Medicaid Managed Care for the good of society, they're going into it to make money.
If the states put too much, too many restrictions and regulations on health plans and physicians to participate in those programs, they will not do it. I've worked with several states who had the ideal requirements for data collection, and all of that, but from the plan's perspective, they say this is nice, but you're not paying us enough to do all of these things.
And from the physician's standpoint, if anything that makes it more burdensome for them to do business, a lot of them feel as though what the states are doing through these Medicaid plans are turning their offices into a data center, instead of a physician practice. And a lot of them find that trying to capture all of this data is really interfering with how they provide medical services.
And so when we talk about, you know, getting the health plans on board to do this, we have to understand that they can also take their ball and go home, or play it to somebody else's backyard, because they're in it for money, and if they realize that there are just too many requirements, even though these are very logical requirements for them for the State's perspective, it will be difficult for them to participate because, again, the reason 99.9 percent of them are becoming involved is to make money.
But as we've seen also throughout the country where a lot of plans that have gone into it, realize that they're not making money, and then they get out the first opportunity they get.
So, that's something always to keep in mind, is that the states don't control the health plans or the physicians, you know, they are trying to, through a cooperative effort, to get them to participate so it's not a situation where, you know, they can dictate -- they can't enforce once the contract is in place, but if those health plans or providers have really bad experiences from those states, then they're not going to participate in the future, or they're not as likely to, so that -- okay.
MS. IEZZONI: Thank you, that's makes --
MR. DETMER: We had two academic health centers for a dozen years with about, you know, a hundred physicians, we didn't control them either, so --
DR. LOCKHART: I might also say, though, it depends on how hungry the groups are --
MR. DETMER: Yeah, that's true.
DR. LOCKHART: -- and how much the penetration of the market is.
MS. IEZZONI: That's right. Any final comments?
MS. ARAKI: Well, actually, I just want -- one of the projects that this Committee is also doing is on a separate track, but related to the public hearings we're having on Medicaid Managed Care, is we actually have a contract where we're trying to develop, working with Sarah Rosenbaum at George Washington University, we're trying to develop model language for something that you just mentioned about including that bid contractor.
DR. LOCKHART: Contracts. Right.
MS. ARAKI: And so what my question was, are there some specific recommendations that you think should be in there?
We're trying to look at it at a broader perspective, rather than just categorical clock random kinds of information. But data's -- public health data, you know, having to collect this is -- this need of data that all Medicaid contracts should actually collect.
DR. LOCKHART: Are you asking specifically about data, or general contract language?
MS. IEZZONI: Data.
DR. AMARO: Data.
MS. ARAKI: Well, data reporting.
DR. LOCKHART: Contract language around data reporting.
MS. IEZZONI: Around data reporting.
MS. ARAKI: Well, we really should make sure it is in there. I mean, I gathered from your presentation that you had thought about it, and that you felt that there were some things that really should be part of every Medicaid Managed Care contractor.
DR. LOCKHART: I can't say I've specifically sat down and sorted that out. I know in looking at some of the contracts that some of the states have and some other plans, I mean, it's sort of like a pick-and-choose.
MS. ARAKI: Yes.
DR. LOCKHART: There's a good comment here, and a good piece there, and I don't know that -- I mean, it's an excellent idea. I ought to sit down, probably, and look at it, but I haven't yet.
DR. APPLEGATE: Well, Diane, when we were sitting outside earlier, was saying that, and I just assumed that all Medicaid Managed Care across the country was submitting encounter data totally, and was --
DR. GREENEICH: Right.
DR. APPLEGATE: -- surprised that -- I mean, that at a bear minimum --
DR. GREENEICH: Right.
DR. APPLEGATE: -- seems to me, should be an absolute requirement.
DR. AMARO: We've heard also that, while in some contracts it's stipulated, adherence to that has been quite variable, and --
DR. APPLEGATE: Well, this goes back to the sanctions.
DR. AMARO: Yes. And that --
MS. IEZZONI: Right.
DR. APPLEGATE: I mean, one of their payment mechanisms could be --
DR. AMARO: -- there has to be sanctions.
DR. APPLEGATE: -- we get a tape with your data, you get a check.
DR. AMARO: That's right.
MS. ARAKI: But I was kind of interested in the rewards, too.
DR. LOCKHART: Yes.
MS. ARAKI: I mean, there might be -- I mean, that was a good suggestion, and --
DR. GREENEICH: One of the issues, I think, with encounter data, is that in the early days of AHCCCS, at least I've heard, that the benefit of contributing encounter data was not always seen, but as the plans began to see the benefit from the demonstration of efficiencies, as I alluded to, that it was a smoother process.
And I truly believe that encounter data makes a great deal of difference in the AHCCCS system, as far as monitoring quality of care, and also the costs of care.
MS. IEZZONI: Um-hum.
DR. APPLEGATE: Well, I was at a NACHRI conference, to a quality assurance conference, and I was telling them that we get all the encounter data from our contract providers, and then we run our own reports --
MS. IEZZONI: Um-hum. Right.
DR. APPLEGATE: -- which we share with them. They don't have the burden of producing those reports. We consider that -- they just give us the raw data, and we then run the analyses and the indicator studies, and then bring that back to them in a sharing situation. And we think that's a workable way approaching it.
MS. IEZZONI: Kathy had a comment.
MS. COLTIN: Yeah. I was going to say, we had an interesting presentation from Rachel Block at HCFA at our meetings in Washington, and apparently there were 38 states that currently had contracts with managed care organizations, and 36 of them were getting encounter data. Massachusetts happened to be one of the two that was not.
But our newest contract proposal that just came from the State does require us to provide encounter data for the year, beginning this July. And what struck me, as I looked at it, is that it contained a list of data elements. And having sat at the meetings in Washington and seen the list of data elements that Nebraska had on their list that they had provided, and there is no -- and looking at your recommended minimum data set, there is no uniformity --
MS. IEZZONI: That's right. That's true.
MS. COLTIN: -- across the states around which data elements they're asking the managed care organizations to produce.
Now, for managed care organizations that have multi-state operations, that creates some added layer of complexity. But, from the standpoint of being able to create any kind of bench mark data --
MS. IEZZONI: Right.
MS. COLTIN: -- you need to have the same data elements to work with. And it seems to me that, you know, your recommendation that there be a minimum data set, and that it be uniform across the states, would make a great deal of sense.
HCFA has not stepped into that particular void, as I see it. The Balanced Budget Act has required them to do it for Medicare, and they are actually specifying the data set for submission of hospital encounter data for this year, and then we'll be moving on to get the outpatient, and they'll issue specifications for that, as well, not for this year, but in the future.
And there'd be a nice opportunity to piggyback off of that, then, you know, for the states, because from the managed care organization perspective, once you write the program to produce the data for Medicare, you could produce the exact same data for Medicaid. It doesn't seem to me there's any real coordination, though, going on --
MS. IEZZONI: Well, this might be part --
MS. COLTIN: -- around that.
MS. IEZZONI: -- of our recommendation, Kathy, that we need to think through from our Committee. Yeah. Good.
Other comments? You all have been very generous with your time, and we thank you for your thoughts. They're very interesting.
DR. APPLEGATE: Come back in a couple months when the spring flowers are out.
MS. IEZZONI: Right.
DR. APPLEGATE: All of this rain, we don't get that very often.
MS. IEZZONI: We're evidence based medicine practitioners here. We need the evidence. So, thank you.
DR. LOCKHART: At least we don't have the California floods.
MS. IEZZONI: Right. That's true. Thank you. No, it looks beautiful outside.
Okay. Let's see. I think -- why don't we just take off, or do you want to spend any time talking, or --
MS. WARD: Your original idea to do some chatting about a report. Have you thrown that out?
MS. IEZZONI: Yeah. Well, I wasn't sure, because it was the three of us who talked. I hadn't had a chance to talk to Hortensia, Don, Kathy, Mary, actually.
What the thought was among the three of us, Elizabeth, George, and myself, was that we are stopping a little early. It might be a good opportunity to talk about the report that we want to write based on this initiative, and what themes we'd like to emphasize.
Are people willing to stick around for a few minutes to do that?
We'll take a short break. And then, why don't we come back and maybe spend until about 4:00 o'clock. Does that sound okay to people? Okay. Is there a problem? Does this need to be public?
MR. VAN AMBURG: Probably.
MS. IEZZONI: Lynette, does this need to be public and transcribed, and stuff?
MS. ARAKI: Well, it'll be helpful for the minutes and stuff.
MS. IEZZONI: Well, I know. Is there going to be a problem with you guys staying until 4:00? No? Okay.
We'll be back in about five minutes, and we'll stay until 4:00.
(Whereupon, a recess was taken from 3:19 p.m. to 3:29 p.m.)
MS. IEZZONI: We do want this to be transcribed so Jason, and Mary, and Carolyn, back at the ranch, can hear what we're saying, we should probably get started right now. Okay?
So, basically, here's the deal. Mary Moien has been contracted, or will be contracted to help write the final report from this initiative. Keep in mind, however, that Sarah Rosenbaum and her colleague at GW, are also going to be writing a report based on the investigation that they're doing under contract to us about, you know, contractual language, et cetera, for data reporting for Medicaid Managed Care.
And so, at some point, the information coming from the meetings that we've been having here has to be merged with what Sarah Rosenbaum from GW has come up with, so we can produce a complete and final report.
And I think what we're going to do, too, as a subcommittee, is to identify themes, areas that we view as particularly important that might ultimately lead to specific recommendations that we'll be making at the end of this kind of project.
So, Elizabeth and George, I asked you this morning, since you're both the State folks here, and, George, you were actually the person who suggested that we focus on Medicaid Managed Care, to begin with, it's all your fault, in other words, so it's all now your responsibility.
If the two of you could just talk through, kind of maybe even stream of consciousness, if you would, what you think we've been hearing, and what are the kind of themes that we might want to organize our report, and then, ultimately, our recommendations around?
George, you want to start?
MR. VAN AMBURG: Well, the one thing that's kind of surfaced in this, is that no one is looking at population outcomes. They're looking at plan outcomes, but not population outcomes, and I think that's got to be part of the focus of the report, is how you'd integrate the data to get population specific outcomes.
For example, going to the public health side, one of the things that should be in the Medicaid Program is smoking cessation or smoking prevention, tobacco use prevention programs for kids, and looking at what the outcomes of those are, at some point in time. It has to be done.
Everything referred has been how do we compare Plan A with Plan B, and how do we look at the bids, and what have you, but nothing is looking at the Medicaid population as a whole. I haven't heard anything about that. And --
MS. IEZZONI: So thinking of plans within Medicaid.
MR. VAN AMBURG: Um-hum. So I think that's an issue that has to be looked at.
I think this whole issue of the analysis of data and the feedback of data to the plans and to the population is critical, and we haven't heard a lot of that, either. Sundin puts data in, he doesn't get anything out. And I'm sure that's pretty typical of the plans. I'm not sure.
Maybe Kathy could talk about that a little bit. But you're not putting data in right now to assist them, are you?
MS. IEZZONI: Not in Massachusetts.
MR. VAN AMBURG: Not in Massachusetts.
But that's been typical of data systems forever, that people put data in, and it sits there, and nothing comes out.
MS. ARAKI: Now, he mentioned, Sundin mentioned that he does give the plan -- I mean, just towards the end, remember, he made a --
MR. VAN AMBURG: He does his own analysis, right.
MS. ARAKI: Okay. I see.
MR. VAN AMBURG: But that's not the Medicaid Program, that's the --
MS. ARAKI: He's just looking at public health?
MR. VAN AMBURG: That's a public health program, yes.
MS. IEZZONI: So, basically, George, can I just expand upon what you're saying and just make sure that I'm clear. You basically feel that if plans or providers are going to be required to report data, that there needs to be a quick pro quo.
MR. VAN AMBURG: Yes.
MS. IEZZONI: It needs to be sent back to them in a useful way that they can --
MR. VAN AMBURG: Or giving them access to the data so they can do their own analysis, as well.
MS. IEZZONI: Um-hum.
MS. WARD: Okay, I think, then, we'll just expand on that same thing. I think we are still not saying what the purpose of the data is, justifying them, what the data is that people are sending in. I think we've heard the basic sort of ABC's data systems, but I can't find them, which is, don't ask for data unless you know what you're going to do with them.
MR. VAN AMBURG: Um-hum.
MS. WARD: And don't ask for them, unless you know what it is that it is, and make sure that it's somehow explainable and standardized.
We've done everything possible wrong here, and I don't want to just -- I don't want to have the report part blame. I think we need to figure out --
MR. VAN AMBURG: Um-hum.
MS. WARD: -- things are really bad. Now what can we do to really encourage things to get better? Unfortunately, I think we're on the backs of data standardization, and so we can use that as a platform to say this is the best possible environment of which to try to fix this up, and that is standardize.
And maybe you need to ask for less. I mean, having a minimum data set --
MR. VAN AMBURG: Um-hum.
MS. WARD: -- was some of the best news we've -- I've heard so far. I agree that we're asking plans to submit unbelievable amounts of data, and I don't think anyone's proved why they need it, or if they can use it to answer any of their questions.
MR. VAN AMBURG: Well, a lot of their decisions about what to ask is based on paying bills and fee-for-service, and then carrying a lot of it over, certainly in the dental area, that's been true.
Maybe the report that we're looking at should be pointed towards some principles that would be practices that we'd like to see happen.
MS. WARD: Yeah. And I think some of the -- I liked when she started talking about they have a -- asthma's important to Arizona. Diabetes is important to Washington state. I have some diabetes program managers who say that Medicaid and managed care, generally, whether it's Medicaid, or otherwise, is the best thing that happened to diabetics in the state of Washington.
But if we -- because of the ability to get together and do the kind of we're going to count every diabetic, and we're going to do something together. But the reason we're able to do that, is that people are stilling willing to collaborate with each other. The plans are still willing, but they're not sinking to the degree under these other kinds of reporting systems, but they're willing to take some time and energy to look at some denominator population-based public health issues.
But if we keep going the way we're going, I don't think these plans are going to have the time, the energy, the dollar to do anything with us, with population data, if we keep just overwhelming everybody with give us more data, give us more data.
MS. IEZZONI: Let me see if I can understand, Don, and then -- because one of the things that we've also heard, though, pretty clearly from a lot of people, is that they are interested in standards.
MS. WARD: Yeah.
MS. IEZZONI: That they do want some national standard or some national suggestions about what would be the ultimate thing to collect.
So, what I'm hearing here is attention, and it doesn't need to necessarily be attention, it could actually be a positive thing --
MR. VAN AMBURG: Um-hum.
MS. IEZZONI: -- that there might be a standard that is very, very minimal, and then kind of allowing for the site-specific, or state-specific asthma versus diabetes kind of overlay on top of that very specific, but standard minimal data gathering.
Does that sound like something like we have been hearing? Am I summarizing that correctly?
MR. VAN AMBURG: I think it could work that way, if you orient it towards the data collection system should allow the group to do this and that, or the monitoring asthma, or to monitor diabetes, or what have you, rather than specify all of the individual elements.
Everybody wants standardization because the states kind of go overboard and have all their specific requirements and unique things, and we might be better off with some principles, than -- because we've given them data sets that the Committee has put on.
MS. WARD: No, I was struck with, Kathryn, you were commenting at the end about what's happening because of the Balanced Budget Act in Medicare.
MS. COLTIN: Um-hum.
MS. WARD: How can we, as government, be going to providers, whether they're hospitals, or individuals, or collections, and say the Balanced Budget Act is asking you to standardize for Medicare, but we'll call you in a couple years about the other side of the government and its part?
MS. COLTIN: Um-hum. Right.
MS. WARD: Everything we're doing is continuing to fragment and disintegrate the care at the level. If Medicare is going to standardize, for heaven's sake, let's standardize government reimbursed care.
MS. IEZZONI: So can we use the same standards for Medicaid as we're using for Medicare?
MS. COLTIN: Um-hum.
MS. WARD: At least --
MS. COLTIN: And are the standards that they've put out for Medicare consistent with the standards that we're recommending under HIPPA?
MS. IEZZONI: Uh-huh. Do we know the answer to that question?
MS. COLTIN: Well, they're using different data --
MS. IEZZONI: I mean, don't they have to be?
MS. COLTIN: -- elements that, right now, at least for the hospitals, they're using '92 data elements. The problem is that there's a lot of flexibility, at this point in time, on how those data elements are actually formatted and transmitted, so -- because the time line.
I mean, it would be moving the time line up two years to plans to say and you must submit them this way today, as opposed to saying submit them however you can or however you're doing it currently, but move toward submitting them in a standardized format by 2000.
MS. ARAKI: I thought that's the plan, was to do it that way.
MS. COLTIN: I think it is, but, right now, the specifications really just list the data elements and provide no direction, whatsoever, around the format.
MS. ARAKI: And you're saying that's just for Medicare.
MS. COLTIN: That's just for Medicare, at this point.
MS. ARAKI: Right.
MS. COLTIN: And it's just hospital, at this point.
MS. IEZZONI: Yes, Don, you had a comment?
MR. DETMER: Well, I just wanted to reinforce what George was saying. I think the idea of trying to lay out some principles is really a good idea, and also probably some directions --
MR. VAN AMBURG: Um-hum.
MR. DETMER: -- where we'd like to see things start aiming, and that is to incentives for population health as it relates to this, and some of those things that relate to special population's needs, because, I mean, that's also what this group is also particularly close to.
MR. VAN AMBURG: See, I think there's an interesting problem with managed care, and particularly Medicaid, is that -- and I'll immunization as an example, because it's both a public health issue and a private provider issue.
Right now, public health is accountable for the immunization status of the state, essentially, that's what's going on. If something's wrong, it's the Public Health Department's problem to get kids immunized, and to get them in the medical care system.
Under Medicaid Managed Care, there's going t be questions as what is the immunization status of the Medicaid population under managed care? Before, they were paying for a fee-for-service. If you've got the service, fine, they got paid for it. Now, we're managing their care. And they're going to start asking those questions. They're going to start doing the same thing for infant mortality.
MS. IEZZONI: Um-hum.
MR. VAN AMBURG: And they'll probably do the same thing for tobacco use for teenagers. They'll probably do the same thing on substance abuse.
MS. IEZZONI: Um-hum.
MR. VAN AMBURG: So it's going to be a very interesting problem. They're going to have to come up with these population measures. And that means they have to have some standards and some principles of uniform data from all these different plans.
MS. IEZZONI: And the Health Department, as we were talking about, or the other providers, the other safety net providers.
MR. VAN AMBURG: Um-hum.
DR. AMARO: I think that, you know, before talking about data elements for encounter data, which I would love to see something standardized, but so that we don't fall into the same mistake of coming up with this long --
MS. IEZZONI: I don't think we're going to, now.
DR. AMARO: Okay. But then, initially, we at least need to be clear what are the questions we want answered, and then things should stem from there, because we could end up --
MS. IEZZONI: Yeah. We're not doing another poor data set project.
MR. VAN AMBURG: No.
DR. AMARO: Okay. But I think --
MS. IEZZONI: But I think that was valuable.
DR. AMARO: -- articulating the questions that need to be answered, especially by whatever data should be collected, especially if it relates to the concerns of this Committee, I think, would be a great contribution.
MR. VAN AMBURG: Um-hum.
DR. AMARO: Articulating those very clearly.
MS. IEZZONI: Um-hum. Yes, Kathy.
MS. COLTIN: In thinking about a framework for this, when we were in Washington, someone had brought up the analogy of a camera that we had developed a while back, and it actually, I think --
MS. IEZZONI: Was it us who brought it up?
MS. COLTIN: No, actually, somebody brought it up, said, "Oh, that's the camera."
MS. IEZZONI: Right. It is, our camera's everywhere.
MS. COLTIN: Yeah. But it seems to me that, and this kind of fits with what George was saying, too, it's starting out with, you know, what are the key questions about the Medicaid population as a whole, not just the managed care. And then, how does the managed care play into that, what are the specific questions that you want to ask.
DR. AMARO: Yes.
MS. COLTIN: Not necessarily about an individual plan, but about a managed care --
DR. AMARO: Yes.
MS. COLTIN: -- overall --
MR. VAN AMBURG: Right.
MS. COLTIN: -- compared to a fee-for-service, how does managed care play into -- what are the traditional sources of the information that the states had, and how are those sources being affected by managed care, are they, or are they not being affected, and I think it differs by state, in fact.
DR. AMARO: And the other way around, too.
MS. COLTIN: Yeah. They may be getting more, they may be getting less, depending on how --
DR. AMARO: Or that managed care population, as well as the data reflecting are going to be impacted by changes in public health programs, if those populations are over -- you know, relying on those public health programs. And so some linkage, I think --
MS. COLTIN: Um-hum.
DR. AMARO: -- is needed. I'm not sure yet how that would happen.
MS. COLTIN: And then, you know, what are the key questions about the plans. I know some of the speakers had, you know, how do they use this encounter data that they get from the plans, what are the key questions, like value assessing value, or setting capitation rates, and evaluating. There were a bunch of things that were identified today, and some that were identified at the earlier meeting.
And then moving down to what data are needed to answer those questions, and which of those are needed at the aggregate level, and which of them are needed at the individual level, because that's where some of the confidentiality issues come in, and it's also where some of the data credibility, et cetera, issues come in.
Like, are the states content to get HEDIS data from the plans, or do they want to create it themselves from encounter data.
California is creating it themselves from encounter data. Well, that has a problems, based on what we find about the completeness of administrative data for some of these measures. On the other hand, it may enhance the credibility. If you're going to get it directly from the plans, do you want to require that it be audited, that sort of thing. So there's that aggregate, and then individual level data.
And then, given that, you know, these are the questions, these are the data, what are the states actually getting from the managed care plans, how does that vary by state? Because as I was saying, the lists of data elements we got from Massachusetts are different from New Hampshire. How are they getting it? Are they getting it through contractual provisions? And there's an area to link what Sarah's doing. Or, are they getting it through disease by disease collaborative efforts, where you share specific pieces of information, or is there some voluntary reporting going on? How good are the data they're getting?
We heard some things about the completeness of the information, the accuracy of the information. What are the gaps? What are they not getting, based on what they said they need and what they're getting, what are they not getting that they'd like to get?
I think Donna Moonla (phonetic), from Arizona, mentioned they can't get test results information, so they can't evaluate glucose control in diabetics, for instance. So there are those kinds of issues about what you apparently can't get, given certain kinds of regulations.
How are they using the data they're getting to answer the key questions that they've identified, and what are the impediments to getting, improving, and using the data? We heard things like not having the right mix of personnel. They get all this data in, but you don't have people who know how to analyze it, because the traditional staff that you've had in these programs aren't the staff who know how to work with these kinds of data, or that the data aren't standardized, so you have to go through all kinds of data manipulation to try to standardize them.
But we've heard a lot of different things about impediments. And, so -- and I think that at each step along the way you could bring in where do contracts have a role in this, and what states have actually developed language in their contracts that speak to these various points, like data quality, or completeness, or timeliness, or all those sorts of things.
MS. IEZZONI: That sounds great. Can we sign you up?
MS. COLTIN: No, but I'll give you my notes.
MS. IEZZONI: Yes, Elizabeth.
MS. WARD: One of the things that occurred to me in listening to Kathryn, is that -- and it might address some of the things that a couple of us were talking at lunch, is what you're describing, Kathryn, is a collaborative effort, I think more than just with our researcher who's on contract, but interacting with HCFA about this report.
MS. IEZZONI: Um-hum. Um-hum.
MS. WARD: And I think this is going to be an enormous -- our effort will be a total waste of time, if it is seen as an audit by this committee over here --
MS. IEZZONI: Right.
MS. WARD: -- on an agency. I hope that that's what we want to be doing, is an audit on HCFA.
What we've got to do is share with HCFA what we've been able to do, in terms of getting some testimonies. They're questions that only HCFA can answer on some of our questions, and if we could, if at all possible, find some collaboration there about how to answer these and put it out as a shared interest, about how to keep -- how to make managed care work better in the state, particularly in this country around Medicaid, and what kinds of --
MS. IEZZONI: You know, Rachel Block from HCFA had been planning to join us at these meetings, but, unfortunately, she has the flu.
MS. ARAKI: I think the flu.
MS. IEZZONI: And so she called at the last minute to say that she wouldn't be able to be here. But I think -- do you know if she's planning to come to Massachusetts to our Boston --
MS. ARAKI: I think that was her plan, was to --
MR. GOLDWATER: Yes, she is.
MS. ARAKI: -- come with me.
MS. IEZZONI: Yeah. Because that would be a really -- she seemed really great and really interested in hearing from the people who are speaking to us in January. And, so I think that maybe working through with her where we're going would be a good idea.
Hortensia.
DR. AMARO: I don't know if you talked about this, but I think that in addition to the encounter data, what I heard was also the need for a standardization on the enrollee satisfaction, solely, because it's needless, it's like there's no standardization, we haven't developed the criteria of what's appropriate, or how do we use it and report it.
And the other issue that was brought up in testimony was some way of looking at analyses of denials for service, or specific types of care. I think this is particularly the case with populations who utilize the system a lot. I'm most familiar with it in mental health and substance abuse, and it happens all the time. And people tell me -- I tell them, but, you know, it shouldn't happen if they just did this, and, you know, we're on the other side, the provider's side trying to deal with the system. It happens constantly.
And, so I think looking at that area of denials of care is very important, in terms of the customer satisfaction, and kind of know the limitations.
MS. IEZZONI: Kathy. You have --
MS. COLTIN: This is an area where there really hasn't been much in the way of standardization, even by NCQA as it applies to health plans, around how do plans track complaints, you know, where do you cross a threshold between when something is a suggestion and when it's a complaint and it should be logged and reported; how do you classify them and categorize them so that you can report on them in some standardized way as to, you know, whether they relate to care, or whether they relate to paperwork, or whether they relate to choice of providers or, you know, AHCCCS issues.
I think, you know, to the extent that this is an important area, I don't know what different states have put in their contracts, and maybe this is something Sarah can look at, around the tracking and reporting of complaints. I know that, you know, certainly, beneficiaries can complain to the State directly, but can also complain the plans. And there's another area around data linkage. I don't know the extent to which any of that information ever gets aggregated. You've got some, I've got some, you know, maybe if we put it together we get a clearer picture kind of thing.
And I agree with Hortensia about the satisfaction and --
MS. IEZZONI: Yeah. Well, there are different categories of data, obviously, that we need to focus on, and one of them is patient reported functioning, patient reported experiences with their care, or satisfaction, depending on whether you buy into the pick or model, or whatever.
But, are there any other broad themes? I know, Mary, as you're sitting here, what do you need from the Subcommittee to help you begin to think about sketching out?
MS. MOIEN: Well, I would say, having sat through this meeting, and from what you all are now talking about, I'm thinking, oh, my God. You know, I don't know that I see these themes coming out of -- I mean, certainly some of them, but I don't see a lot of these themes coming out of what these people were talking about today, so that makes me a little nervous.
MS. IEZZONI: Well, I'm actually a little surprised by that, because I did feel some of that, but it might be formed --
MS. MOIEN: No. I definitely --
MS. IEZZONI: Yeah.
MS. MOIEN: Yeah, I think I definitely felt some --
MS. IEZZONI: It might be formed by what we've heard, because we've had three other meetings thus far where we've heard from people, one in January, and two in 1997, and so, obviously, it'll be more in-depth --
MS. MOIEN: Yeah, I have not read those yet.
MS. IEZZONI: -- the detailed transcript of those.
DR. AMARO: I think the other major theme that we heard, and maybe it's because we've been -- you know, we've had a number of meetings, and so we're just picking -- like extracting out the real big picture theme, but the other theme that we heard -- have been hearing from the beginning, is that whatever the changes are, there's going to have to be some thought and some support structures to fund these massive system changes, or people aren't going to be able to implement it. There's going to have to be some way of supporting that.
MS. IEZZONI: Right. And we heard --
DR. AMARO: At some point, we need --
MS. IEZZONI: -- we heard that clearly today. And it kind of goes to what George and Elizabeth have been saying, is don't require expensive data systems, unless, you know, the expense is going to be worth the benefit. I mean, it's kind of a classic cost benefit --
MR. VAN AMBURG: Right.
MS. IEZZONI: -- kind of thing. And, you've identified somebody to pay the costs.
DR. AMARO: Right.
MS. IEZZONI: Who's willing to do so, and able to do so.
I know that we have to pack up the transcribers and the little box in about five minutes. Are there any other kind of -- Don?
MR. HITCHCOCK: Maybe I missed it because I was late coming back in, but that was the other issue that the incumbent accountability side in trying to again relate more to the users, if you will, as an active participant in all this. And we clearly hear that, especially with the kids that have some of those problems, and maybe it's already on our plate, but I think that's a perspective that --
MS. IEZZONI: Yeah. George talked about making sure that anything that are collected are sent back to the providers or some group that really needs to know that information and can use it productively to improve the care of people. You know, so --
MR. HITCHCOCK: Well, I think it coming back to the public --
MS. IEZZONI: Right.
MR. HITCHCOCK: -- is part of this --
MS. IEZZONI: Yeah. I think you're right, and we didn't specify that that needs to be there, too.
MR. HITCHCOCK: Right.
MS. MOIEN: Lisa, earlier today George had mentioned, and he also mentioned at lunch, the issue of this overall data collection, versus doing sample surveys.
MR. VAN AMBURG: Um-hum. Well, I think that --
MS. MOIEN: Did --
MR. VAN AMBURG: You know, I think you could go under the philosophy, and I think Elizabeth agrees on this, the minimum set of data. You always have the option of going back for more detail, because you have the sampling frame, to begin with. When you try to collect everything in the data set to whatever data analysis you'll ever want to do, it'll fail, there's no question about that.
MS. IEZZONI: And it goes to what Kathy was saying about you need aggregated data --
MR. VAN AMBURG: Um-hum.
MS. IEZZONI: -- you need individual data. I mean, at what level do you need the information.
MR. VAN AMBURG: Um-hum.
MS. IEZZONI: And, so it's all actually part of a big, broad theme, Mary, I think, of feasibility and cost linked, then, to the utility of the information.
MR. VAN AMBURG: I think one thing we don't want to forget, is to be able to do these plans; and, particularly, Medicaid needs to be able to do the analysis, that's one of the subpopulation groups that are unique to their area.
MS. ARAKI: Yeah.
MS. IEZZONI: Yeah. That we don't have good information about --
MR. VAN AMBURG: We don't have the --
MS. IEZZONI: -- to identify.
MR. VAN AMBURG: Right.
DR. AMARO: I can't see why an enrollee --
MS. ARAKI: The encounter database problem, that's the other issue.
MS. IEZZONI: Yeah.
DR. AMARO: But, yeah, I mean, the reason given is because it can be enrollment data, but, yet, I can't see why -- enrollment data at the level of Medicaid, right?
MR. VAN AMBURG: Um-hum.
DR. AMARO: So I don't see why plans just can't gather that. People are asked that information all the time.
MR. VAN AMBURG: But they don't, and that's an issue.
DR. AMARO: Right.
MR. VAN AMBURG: In fact, they said it was voluntary --
MS. IEZZONI: Right.
DR. AMARO: Right.
MR. VAN AMBURG: -- on ethnicity this afternoon.
MS. WARD: And in many states, whoever is determining eligibility is not the Medicaid agency, it is not a health plan, but the system --
MS. IEZZONI: Right.
MR. VAN AMBURG: Right.
MS. COLTIN: And that information is then transferred to the plans.
MR. VAN AMBURG: Um-hum.
DR. AMARO: Right. So you either have good measurement there, and good linkages to encounter data, or you figure -- or you make it part of the minimum data that plans could gather.
MS. IEZZONI: Okay. Yeah.
MS. COLTIN: That's a real problematic thing. I mean, how do you ask the plan to gather that information. The plans could --
MS. ARAKI: Like age, and gender, and race?
MS. COLTIN: The plans have two ways to gather the data. One is to get it from the State Medicaid agency, or whoever is enrolling -- the plans don't enroll the patients. So --
MS. ARAKI: Right.
DR. AMARO: So you may have patients who you never see, or don't see --
MS. COLTIN: No. But then I'm saying then you ask the providers. That's the other -- that's the second way, is to ask the providers to supply that information.
MS. IEZZONI: Yeah. I think what we're going to probably end up doing is having specific recommendations for our recommendations, and we can argue this back and forth.
MS. ARAKI: Yeah.
MS. IEZZONI: And that will be the time for us to get to some more detail. But, Mary, I think what we need to do, at this point, is begin to at least have a very broad outline --
MS. MOIEN: Um-hum.
MS. IEZZONI: -- of where we're going, and I very much like the way Kathy framed it, because it has the camera metaphor to it, but I think starting with the questions, and then going down from the questions, but bringing in the cost and feasibility issues in very early on.
So, unless anybody has something pressing to say, it is 4:00 o'clock, we should --
MR. HITCHCOCK: Plans for dinner. That's pressing.
MS. IEZZONI: Well, why don't we officially adjourn the meeting, okay, so that way those folks can pack up and go home. Do I have a second to that? Do I need one?
MS. COLTIN: Second.
MS. IEZZONI: Thank you. Bye.
(Whereupon, the deposition was concluded at 4:00 p.m.)
CERTIFICATE OF REPORTER
STATE OF ARIZONA )
) ss.
COUNTY OF MARICOPA )
BE IT KNOWN that I took the foregoing tape recorded proceedings; that I was then and there a Notary Public in and for the County of Maricopa, State of Arizona; that this is a true and accurate recording and transcription of the proceedings consisting of 195 pages, done to the best of my skill and ability.
WITNESS my hand and seal of office this
day of February, 1998.
Angela T. Thornton Notary Public
My Commission Expires: