Washington, D.C.
The Subcommittee on Populations was convened on Monday, January 24, 2000, in the Hubert H. Humphrey Building in Washington, D.C. The meeting was open to the public
Overview of Functional Assessment and Health Status: Issue
Identification
Robert L. Kane, M.D., University of Minnesota School of Public Health and
William Braithwaite, M.D., Ph.D., ASPE
Dr. Kane said disability status is used to determine eligibility in all sorts of federal and state programs and it is therefore critical to have accurate and honest information. He discussed the pros and cons of various methods of surveying different patient populations, including geriatric assessments, pre-admission and pre-discharge surveys, as well as self- reporting and case management approaches.
Dr. Braithwaite reviewed the various types of claims for inpatient and outpatient, the sets of standards involved and the sometimes-dizzying complexity of the forms. He also detailed the process necessary to propose a change and to get it approved by HHS.
Functional Assessment and Health Status: Lessons Learned
Dr. Donald Lollar, Centers for Disease Control and Prevention Dr. Nancy
Whitelaw, National Council on the Aging
Dr. Lollar focused types of functional limitation: personal, societal and on the impact of the environment on functioning. Specifically, he talked about eight areas of personal activities: learning, communication, simple movements, mobility, personal care, routine tasks, behavior and sensory tasks and participation in autonomous activities such as travel, work, school, community and leisure.
Dr. Whitelaw talked about her work with the Henry Ford and with The Institute of Medicine, NCQA and HCFA on the Health of Seniors measure. She said using the data in any meaningful way to predict patient functioning or to plan strategically has proved incredibly expensive to date. She recommended developing an approach that spans the continuum of care.
Functional Assessment: Risk Adjustment and Rehabilitation Focus
Dr. Gretchen Swanson, Western University of Health Sciences,Dr. Jinnet Fowles,
HealthSystem, Minnesota and Dr. Margaret Stineman, University of Pennsylvania
Dr. Swanson used a series of slides to talk about the concept of “medical necessity” and the adjudication process. She talked about how to add multiple qualifiers to the ICIDH code to detail levels of impairment.
Dr. Jinnet Fowles spoke about the experience collecting data at the orthopedic, ophthalmology, radiology and cardiology departments at HealthSystem, Minnesota, pointing out gaps in data collection and the market applications that make some data systems more viable than others.
Dr. Margaret Stineman compared data collection with national norms and talked about what happens when collectors case mix adjust. She talked about how length of stays were negotiated with physical therapists and other staff to improve efficiency and to assure patients better long-term outcomes.
Agenda Item: Functional Assessment: Selected Focus Areas
Ruth Stein, M.D., Albert Einstein College of Medicine
Dr. Stein discussed the reasons that adult standards like ADLs are not appropriate measures for functionality in childhood. She said the only feasible way to assess children on a large scale is to use measures that cut across conditions and age groups. Money will be needed to support the psychometric work of any endeavor.
Agenda Item: Functional Assessment: Selected Focus
Alice Kroliczak, Ph.D., HRSA
Dr. Kroliczak spoke about her experience working with HIV/AIDs patients at HRSA under the Ryan White Care Act. She said spending money on data collection takes away from patient services and that barriers to data collection in this population are many from homelessness, to mental impairment, to a history of trauma or incarceration.
Questions followed each presenter.
Dr. Iezzoni adjourned at 4:10 p.m. January 24, 2000. The January 25 session was cancelled due to a snow emergency in Washington, D.C.
CALL TO ORDER, ANNOUNCEMENTS, INTRODUCTIONS
Chair Dr. Lisa I. Iezzoni called the first of three or four meetings of the Subcommittee on Populations to order at 10:05 a.m. She asked for introductions and outlined the committee’s agenda as follows:
Dr. Iezzoni points out that lead speaker, Andy Kramer, could not make the meeting due to a skiing accident and will be replaced by Bob Kane.
Dr. Iezzoni framed the discussion by saying that the National Committee on Vital and Health Statistics has a long history of advising the nation about new data gathering. In about 1972 the uniform hospital discharge data set was articulated by the National Committee on Vital and Health Statistics, and it became kind of the national standard for collecting diagnostic information on hospitalizations. More recently, diagnostic information has been collected on physician claims, at least for the Medicare program, which tends to disseminate out to private payers and others. This diagnostic information is obviously helpful. It's helpful to know diagnoses. But sometimes the link between diagnoses and health or well-being is not as straightforward.
Therefore, back in the mid-1990s when the National Committee on Vital and Health Statistics had a project to identify core sets of information that should be routinely collected about people's health, Dr. Iezzoni said the committee put in a placeholder for functional health status. It was a placeholder, because the committee did not know how best to capture this data. The committee knew data about functional status was important for a variety of different reasons:
Dr. Iezzoni articulated the challenges associated with gathering this information in a series of questions: How to do it? Functional status is multidimensional. Which dimensions should be the focus? Who should information be collected from? Patients or their providers? We know people and their providers often will disagree when looking at a person's functional status. Dr. Iezzoni said more acute issues arise where children are concerned because they cannot respond for themselves.
She said the cost of collecting this information could be huge, and the committee needs to struggle with what sort of accuracy standard it will tolerate. There are trade offs not only in terms of financial costs, but also potential cost in terms of privacy concerns that people might have in responding to this information and collecting it. Finally, there is a need to look at the utility of the information for quality of care monitoring, public health monitoring, payment. After laying the foundation for the committee’s work, Dr. Iezzoni said participation by two other NCVHS subcommittees -- the Subcommittee on Standards and the Subcommittee on Privacy -- hopefully will help finalize the approach.
Before introducing Dr. Robert Kane of the University of Minnesota School of Public Health, Dr. Iezzoni said the committee needs to explore the issue openly and to decide within nine months whether or not it is worth moving forward on the proposal.
“Overview of Functional Assessment and Health Status: Issue
Identification:"
Dr. Robert Kane
Dr. Kane said the committee needs to grapple with what the “it” is, because there are a lot of different “its” floating around, some more worthwhile than others. Accuracy is extremely critical and important and no one knows how to assure it once data collection gets to the last 10 percent of the population. Another issue is, if this information is going to be used to generate income, than would you want to trust the people who are going to be paid to provide the information?
Dr. Kane said there are places where people distort data for their own individual purposes. Right now providers are not trusted to give good information, but consumers cannot always be counted on to be accurate either. There are people in the disability business who suspect clients of exaggerating their illness or disability to affect their payment level positively.
Because disability status is used to set eligibility for a number of federal and state programs, people are always going back and questioning whether these reports are as absolutely honest as they need to be. It is important to worry about both these things. Kane then discussed the most obvious flaws in the most common method of collecting data: the large survey. One common method is to train a large armada of surveyors, another is to put extra columns on discharge papers and hope people will fill them out; another method is to train people to review existing forms and see what data can be culled from them.
Each method has problems, Dr. Kane said. First, there is no evidence that anyone in a clerical position could abstract this information from discharge summaries in a systematic way that would be helpful. Functional status is collected by various people at various times and means different things depending on the perspective of the collector. Kane said his main interest is what happens to older people and how do we use functional status data right now to determine Medicare capitation rates. Most people think the existing system does not do a very good job of predicting people at the high end of the utilization curve.
Functional status data could also be used to set prospective payment rates, for rehabilitation, for nursing home care, for home health care. But that is still a short-term approach and “frankly wrong,” Kane said. The goal should be to set payment rates for post-acute care that is not modality specific. Prospective payments rates for nursing homes have nothing to do with prospective payment. Rather, it is a daily-rate payment, not an episode of illness. This method does not encourage flexibility or creativity or interchangeability among various care modalities, he said.
Kane said if the goal is to set a rate for an individual so as to estimate a person’s true risk over time, then it should not be tied to one method of care or service modality. Functional status for post-acute care is among the most predictive elements established to date in terms of what a person’s utilization is going to look like, as well as their outcomes.
It is certainly possible to do functional status as part of comprehensive geriatric assessment; this approach is expensive and works best with those with highest chance of benefiting from it. There is also a case management approach -- so far underutilized -- as a way of targeting primary care management. One can argue that data collectors do not recognize the presence of chronic diseases and that this information needs to be fed into the system in a proactive way. If this was done it would be possible to monitor people who need this kind of care and to learn when and how to intervene in the most useful way.
The next question centers around self-reporting, Kane said. Data collectors differentiate between self-report, as opposed to professionally determined information, as opposed to demonstrated functional status. It is necessary to make a clear separation between where data comes from, and how data is obtained. There is a prevalent myth in the health care system that somehow data that comes from professionals is better than data that comes from patients. But Kane argued that health professionals are notoriously poor at collecting systematic data on functional status. He said it is much better to get it directly from a patient or, when that is impossible because of poor health, from a well-connected proxy, a relative or caregiver. Of course, the question of just how accurately patients report on their disability frequently comes up but he said as long as questions are asked systematically and in the same way, patients are by far the most reliable source of functional status data.
Kane said the alternative to self-reported data collection is to do direct measurement through simulations, performance-based testing. But the enormous cost and sheer impracticality and inconvenience of direct methods of data collection do not fit the purposes of the committee. Kane noted while most doctors do not know what ADL stands for, most occupational therapists would not be satisfied with the simple report that a person can bathe and dress themselves. The OT professional would say that there are 18 steps in bathing and 28 in dressing, and that while someone may be able to do these tasks of daily living, can they perform them in a reasonable time and in a reasonably successful manner? Kane said deciding what level of detail the committee wants, and where and how to collect it most accurately and conveniently are questions to consider. The environment in which these ADLs are performed plays a very real role in functional status. For example, no one in a nursing home bathes themselves, not because they can’t, but because it is not allowed.
Kane said the familiar health status measure, the SF36, does a pretty good job separating the well from the sick, but is not so good discriminating the sick from the very sick. He said the same is true about IADLs versus ADLs, and where those cuts are made. The question again is where do you want to have the most discriminatory power along the spectrum, and what is it that you are choosing? Children and older people have to be measured differently with respect to their peers and their ability to perform within a group where growth and mainstreaming is the norm. For older people, the data is documenting decline in function and trying to slow the rate of decline by properly timed, creative interventions.
Arthritis is a disease with different rates of decline depending on type of disease and type of functional measurements. In arthritis Kane said orthopedic doctors look at things like grip strength or walk time to get at upper and lower extremity function. Those are clearly influenced by the disease activity, but they are also influenced by other factors. But when dealing with a rheumatoid arthritis patient with joint deformity, even if they are treated so they had no acute activity in their joints, they still wouldn't necessarily have very good grip strength, or very good walk time. The underlying problems that are chronic to the disease will affect some of those early performance measures.
Kane said more comprehensive measures like the AMES look at a broader range of ADLs related to joint conditions and consider all different scales and environments as well as the patient’s emotional status. He said the choice of measurement needs to be based on an understanding of the nature of the process being measured, and the factors that are likely to influence that, and which factors are changeable, and which aren't, and what the focus is. Depending on whether the measurements are for epidemiological purposes or for payment purposes, the factors and the weight given them may be quite different.
The question is, when evaluating functional status of say an arthritis patient, whose values do you want to use? Consumers? Professionals? Or you could actually develop a system that allows each of these measures to be weighted by each person who suffers the disease. So instead of having a constant set of weights, you would have an individually adjusted set of weights. There are advantages and disadvantages in different settings.
If you want to make policy, and level the playing field, you do not want to allow people to vary their weights, because that might allow them to manipulate the importance of their disease. But if you are trying to do things that really get at the question of quality evaluation, then if the medical care people receive makes their life better, that's probably the big payoff. There are some ADLs that occur several times a day, and there are some ADLs that occur a couple of times a week. Would frequency be used as some kind of a weight to set up importance? Or so you look at the impact on people's lives? And what does that really mean? And how well can people really make those judgments?
Kane said to get a handle on all these questions his research group did a study in which they asked experts in geriatrics, and people who suffer from the diseases, to tell us about how they felt. We asked them to look at the weights for each of these things, and use the magnitude estimation system. What the study showed was that the clients' ratings and the experts' ratings are different. And the clients tend to give much more weight to things that we call the instrumental activities of daily living, which is sort of at the lower end of the left end of the distribution. The experts tend to give greater weight to things at the more severe ADL level of the distribution. These differences make a fairly sizable difference as far as where some kinds of treatments work.
Many questions come up when doing data collection, Kane said. For example:
To what extent should the focus be on condition-specific measures? Should symptoms, as well as the more psychometric kinds of things be considered? Even using an excellent to poor scale, people rate their health very differently, and it turns out to be incredibly predictive of all sorts of things. People seem to know when bad things are happening. People’s predictions are shown to be much more predictive than professionals' predictions about how they are going to do overall.
Kane said if the committee uses surveys, then it needs to think about whether to do them on a sample or on the total population. And that will depend entirely on, for example, how the capitation rate is set up. If the goal is to identify high utilizers and to provide incentives for HMOs to enroll them, then that kind of sampling device won't work.
The cost will vary a great deal depending on how you collect this data. In at least one operational project, Kane found that most data could be collected by mail with some telephone follow-up, and a limited amount of in-person follow-up to the people that don't respond to either mail or telephone. But it is very expensive.
We originally suggested to the government that data could be collected by the HMO itself. The government -- specifically a particular office which oversaw managed care for payment purposes -- had concerns about impartiality. Kane said these reservations were interesting because there currently exists a functionally-based system for nursing home prospective payment that is collected by the nursing home. When we came to talk about paying the HMOs on the basis of data that they would collect in a systematic fashion, the people at HCFA said we could not do that, because there is real money involved there, and we could not trust the HMOs. HCFA insisted we hire a third party data collector to do the data collection, which was done at a very high cost. Then there was the problem of what to do about people whom the third party data collector could not contact? The answer was to pay them at the old rate, and not at the new rate. Kane said because this system could be either an advantage or a disadvantage to the HMO, it creates interesting kinds of incentives for gaming.
Kane suggested the committee clarify the purpose for which it wants to use this data, and recognize that for some purposes a little error can be a very bad thing. As an example, Kane pointed to a study 10 years ago by Josh Weiner which look at four national surveys of ADL data collection and showed about a 10 percent variation in projections based on which particular measure a survey used. That is a pretty big price to pay when surveying something that affects people’s lives, he said.
He also warned the committee to beware of hidden costs of data collection. Kane said there are costs to the kinds of data you include and leave out and they need to be considered before the study is done. Among questions to ask: do we want to use inpatient data or outpatient data or both? Would you want to survey six ADLs and five IADLs? What other data to record? Will everyone fill out the SF36 even if it has 36 items on it.
Somebody has to collect the information. How would you get that data when it comes time to put it on the abstracting form. One thing to think about is that recording data on an inpatient chart is a relatively rare event, and also hospitals have a whole clerical staff to do it.
But if the committee considers doing outpatient charts, there are additional questions: What is the burden that is involved if this new data is suddenly introduced on every outpatient chart? Who would do it? Would you have the clinician stop and fill out a form that would then get transcribed into the outpatient chart? Or would they put it on their hand-held computers? How are changes in functional status actually going to be recorded? Would doctors be required to enter notes every time he/she saw a patient? How would you make sure doctors really asked the questions? Suppose a busy clinician just said, “Looks pretty good to me: We'll give them all 1s.” Kane said this practice has been noted in parts of the country.
The other big question, Kane said, is what is the use of all this data? Do you really want ADL data collected at the time of hospital discharge? Most people discharged from hospitals today are in pretty sad shape. It may not be terribly prognostic of anything if you were trying to set an annual HMO capitation rate. Discharge data is very useful in post-acute care rate setting, but it may not be very useful for setting annual risk data, because people's functional status is going to be very low. So would you even want that?
Then you need to stop and say, what would it cost to collect this data? Kane said using crude, back-of-the-envelope calculations, processing 11 million Part A claims at the low price of 50 cents a claim would cost roughly $5.5 million. If Part B claims for doctors and outpatients are made part of the equation, it would cost $608 million to process the little over 1 billion forms from 1996. That price does not include the cost of getting clinicians to collect the data, but rather reflect the cost of writing the data into the form.
Then the question comes up, what would you do with that data? How would you summarize it? The goal here now is to create a risk adjuster based on an annual prediction of how people are going to do, so creating an annual score for each person makes sense. But how would you tally that score? After a transient illness and a one- time visit to the doctor, or after a longer hospital stay when someone is likely to be at their most disabled? What you are looking for is their chronic baseline level that has the epidemiologically predictive data. But Kane asked how reliable, useful and practical this data is even if it can be collected?
Kane said basically, neither the DCGs, the ACGs or the DRGs systems were designed to generate payment data. They were all basically based on a firm belief in regression modeling. He said the question is, if functional status data is to be added into the mix, perhaps it would be better to collect functional status data in a more direct and perhaps a cheaper way.
He said if another set of columns is attached to the discharge summary reporting or the billing data that might be one way of approaching the data collection problem. But whether the data is collected periodically or continually the goal should be to get useful data and to use that data proactively, not to affect payment but actually to feed that information back into the care system, and begin to encourage clinicians to practice a different kind of medicine than what we have been practicing up to now.
Finally, Kane said the country is still fixated on a 19th century acute care model, when it needs to address the 21st century chronic disease model which takes different data and different strategies.
AN OVERVIEW OF FUNCTIONAL ASSESSMENT AND HEALTH STATUS: ISSUE
IDENTIFICATION:
Dr. William Braithwaite
Dr. Iezzoni requests questions for Dr. Kane be held until after Dr. Braithwaite’s remarks.
Dr. Braithwaite focused his remarks on what is involved in collecting data and what process is needed to put it into administrative transactions. He defined administrative transactions as things like claims and enrollment eligibility requests and answers. The claim and the claims attachment are two places where information is provided from the provider to the payer for the purpose of getting reimbursed.
Some problems exist with motivation and corruptibility, but we need to focus very clearly on the function of these administrative transactions. The payer conducts these transactions to prevent having to pay when it is appropriate, or can otherwise be justified. There are many types of claims, for inpatient and outpatient as well as claims for dental and vision, mental health et cetera. Each has its own set of standards.
Standards also differ for paper and electronic transactions. Until recently, the standards for both were set by the payer. Every provider that had to provide a claim or claim attachment transaction for a patient had to figure out what payer this claim transaction was going to go to before filling it out. Because the rules for the standard claim form are different from every payer. The typical provider has to have about 400 three-ring binders to spell out the procedure for filing a myriad of different claim forms. Some larger providers have to deal with 1,500 different standards for how to fill out a claim form. Most of them look the same, Braithwaite said, because all payers ripped off the HCFA-1500 form or the HCFA UB82 form, depending on whether it's inpatient or outpatient. The problem is they put out different rules for each of the fields in that form. Some of the fields are optional fields, to be defined by the payer. So from HCFA's perspective even, there is no definition for that field.
If the Field is 33, a payer must got to a specific three ring binder, and look up field 33, and find what to put in that field, for what kind of patient, at what time. The providers, as you can imagine, are spending a great deal of money doing this and so far have not found a way to move all of this claim filing to the electronic, online world. One reason is that expensive software would have to be updated annually every time one of 400 payers decide to make a change, at a cost of $10,000 to $20,000 to the technicians making the changes.
Braithwaite said all of this confusion and duplication led to HIPAA, the part of the Health Insurance Portability and Accountability Act of 1996 which required HHS to define standards for the electronic submission of these administrative transactions, like claims and claims attachments.
The HHS is responding to HIPAA by telling the standards developing organizations, or SDOs, to come up with a consistent single set of standards that all payers must use across the country, a single set of data definitions for each of the data items that go into those electronic transactions, and to create a maintenance mechanism that is consistent, and easily trackable for everyone to know what to do when you want one of these standards changed to meet a need. Braithwaite said HHS has come up with a memo of understanding between us, the HHS, and the SDOs, as well as the organizations that currently deal with changes in the content of the claim form particularly, to come up with an agreement on a common electronic process that is able to submit proposed changes, and get those changes through in a reasonable way.
In addition to HHS, there is the Accredited Standards Committee X12 and the American National Standards Institute and others like Health Level 7, (HL7) which are also accredited by ANSI. There are organizations like the American Dental Association, that do accreditation. But the standards are data content standards in the claim process, the administrative processes. So they have come up with a Dental Content Committee. It's a new name for a function that the ADA has been doing for some time. Pharmacies have the National Council for Prescription Drug Programs. There are committees for inpatient and outpatient work called the National Uniform Billing Committee and Claims Committee. These groups have all agreed to follow a common process.
The SDO goes through a similar kind of process to maintain the data models, the dictionary, the structure, the syntax of the electronic transactions that they use in electronic data interchange, or EDI. They are all accredited by the American National Standards Institute. Braithwaite said there is also a steering committee, which does oversight and investigations, and provides for an appeals process consistent across all of these organizations for making changes in HIPAA data standards. Soon there will be a Website so a member of any organization can submit changes.
While still incomplete, a transitional change is underway, from optional fields to conditional fields. If the state law requires that race and ethnicity be included in this transaction, then this is a required field. These are the core changes the process is going, said Braithwaite, urging everyone to get involved. He then outlined the formal appeals and review processes to the steering committee which requires a two-thirds majority to move a proposed change forward.
Finally, all significant changes come to this body, the National Committee on Vital and Health Statistics, which can make recommendations to the secretary. The secretary then can incorporate these change into the regulations through a sometimes long and arduous process, involving attention and lobbying at each decision junction, the end goal of which is to save time and money.
Braithwaite said if there are a significant number of payers and providers involved in this sort of transaction, there’s a good chance of getting the request through the process. When lobbying to change the language around how a claim is processed proponents should use a coherent approach similar to making a business presentation to a CEO.
But problems do arise. Payers, for example, can tell a specific provider that they have to attach information to every claim, because of a lack of trust, a deception or past fraud conviction. There are also conditions under which claim attachments must be provided. Braithwaite said while the process has worked in the past, the public health realm has not been well represented on these bodies. Thanks to Dr. Greenberg, these data content committees have accepted representatives from state and federal public health agencies.
Braithwaite said under Dr. Greenberg’s guidance a Public Health Data Standards Consortium has been founded, and has succeeded in making some moves in the direction of introducing standards to this process. Now we have to convince the standard developing organizations to accept it. If that happens, then the next version of the standard electronic claim at least, that comes forward will have that data field as a conditional field.
Dr Iezzoni opens the floor to questions.
Dr. Newacheck complements the speakers on raising a number of “daunting conceptual and logistical concerns for us,” and then asks Dr. Kane about measures of functional status.
He said in examples you often referred to ADLs and IADLs as potential measures of functional status. Those measures do work very well in many cases, but they often do not work very well for children. In thinking about measures that have been developed that go across the broad age spectrum, have you thought much about the WHO's ICIDH system, the International Classification of Functioning and Disability, and whether that would be perhaps a more appropriate direction to move in as we think about functioning across the life-span?
Dr. Kane claimed no expertise in children and said the first question is why do you want something that goes across the life-span? What is wrong with saying that you want these measures for this group, and those measures for that? We have a tendency to start by saying what kind of data we can collect, and then in a time capsule kind of mindset, hope somebody will dig it up some day and find a use to put it to. Maybe the way to start this is to say, okay, what are the two or three most important envisioned uses? It doesn't mean that somebody won't come up with a better idea ten years from now.
But the pressure to have this committee meet and to do something is driven by some immediate anticipations of uses. The uses that are coming up most actively from an administrative standpoint are going to be rate-setting uses, or risk-determining uses, in trying to see which are the high risk groups. I hope a close third would be trying to improve clinical practice. Now all of those argue to me for much more age-specific measures, rather than generic measures.
Dr. Newacheck agreed and said the committee needs to think what our real purpose is here. Is it really for risk adjustment? Is it for payment standards? Is it for epidemiological purposes?
Dr. Iezzoni said the committee hoped to hear from people who might be using it. The committee wants to explore the placeholder and to see whether there can be a business case for this. I wanted to ask whether quality of care monitoring was ever something the standards committee considered as a business case argument, or whether it is purely adjudicating and paying claims. Under capitated plans, that isn't really an issue.
Dr. Braithwaite said the same electronic form is used for documenting encounters as submitting a claim. I see no reason why the payers and providers wouldn't agree on a cost-effective mechanism for improving the quality of care. That certainly is up there on their list. And I think that if there was a cost effective way of doing that, they would adopt it.
Dr. Kane said he favored quality of care. The issue is: are we talking about quality as an input measure or an output measure? Or, are we going to try and use the functioning as an outcome for looking at how effective the treatment was? The problem with the latter is of course that much of the problem in quality and outcomes is incomplete follow-up. What do you do about the people who are not seen again? The people who don't turn up are usually the ones whose quality of care you worry about the most. So then you could say the failure to turn up was already a bad sign of an outcome. But again, that may or may not always be accurate. It's a question of whether to trust to an administrative system to make a determination of quality. To mandate a national system that would collect that data on every encounter of whatever type, might be a big price to pay.
Dr. Starfield said it's fair to say that in the generation of the core data elements, this committee was not thinking only of payment. If the committee considers population users pursuant to year 2000 goals in terms of documenting systematic differences across population subgroups for the purpose of eliminating them, would it think differently about the kind of measure used and about collecting it for a clinical purpose?
Dr. Kane said in talking about population bases, the committee is talking about epidemiological sampling that would relate to shared group characteristics, ethnicity, income. On that basis, one doesn't need 100 percent data. There is a variation in how good the data is from different kinds of providers, not just by profession, but by location. Free clinics provide different kind of data, than do Park Avenue specialists. What is the risk of generating bad data, biased data by virtue of the fact that the people we may care the most about don't even appear on the radar screen, because they are not seen at all. The functional status of people who are underserved needs to be a crucial focus.
Dr. Starfield asked for comments on the WHO system.
Dr. Iezzoni said that subject will be taken up in the afternoon session. The ICIDH offers a code set for capturing functional status information and asked for questions for either Dr. Kane or Dr. Braithwaite.
Ms. Coltin told Dr. Kane some important points made about the value of these data elements for targeting populations for case management, for disease management programs, for special services, and so forth. Could you comment more about whether you have had any experience with that, and whether that use might be considered appropriate from a business standpoint? Dr. Kane said his experience in this area is very mixed. It really does require changing the mind set of most of the people who are out there in terms of how they do their business.
There is a difference between cheap and good care and some managed care providers are struggling to provide both. Suppose they actually became good at it? And suppose people got to know about it? What would happen? Of course all the people with tough problems would come to them. So right now you've got a managed care system that if anything, is making money by getting paid more than it costs them to give the care by basically having a favorable case mix selection. Now all of the sudden the system turns on them. There is a strong disincentive to become good at this. In the second generation of the social HMOs, we created a risk-adjusted payment system that was individualized risk adjustment for every enrollee. We set up this system. We made the Medicare Current Beneficiary Survey a model, estimated what subsequent utilization would be using the full array of data elements in that. And developed an annual survey that looked a lot like the Medicare Current Beneficiary Survey that we administered to every enrollee of this social HMO.
HCFA, the Office of Managed Care said providers cannot do this and so HCFA went out and hired a third party data collector, which was expensive, to go out and collect this data that we had previously collected the first year from the provider. Then we designed a system, and took this data, wrote the computer programs that set off the triggers, sent out notifications, set up a tracer system, and then used repeated measures to look at progress over time in order to get an outcomes measure in there. And we collected more than function status.
Dr. Lollar asked did you say the provider was the person who completed the Medicare beneficiary-type survey?
Dr. Kane said, “No, the provider collected the data for a year until we hired the third party vendor.”
Dr. Lollar asked: “Have you looked back at the power of the various types of data that you collected there in terms of predicting outcomes?”
Dr. Kane said he would send several articles to Dr. Lollar on that topic.
Dr. Iezzoni asked about having patients completing the information. We have talked about the fact that patient reports are much more valid than provider reports. Is OMB one of the memorandum of understanding signatories?
Dr. Braithwaite: No.
Dr. Braithwaite said OMB gets to review and approve every rule that we propose. And if we propose a rule that has that as a requirement in it, because the industry has decided that its standards should include that, they might want to have input. We have not yet negotiated with OMB exactly how that process is going to work.
Ms. Coltin said this would certainly not be precedent setting. Many of the data elements on the administrative transactions are in fact reported by patients.
Dr. Iezzoni said there is something qualitatively different.
Dr. Kane said that raises an interesting question. The reason that we particularly wanted patient report was that we were using as our predictive model the HCFA Medicare Current Beneficiary Survey, which basically is a survey of people, of Medicare beneficiaries. And this gets you into the question of perceived health, versus real health if we had a health-o-meter to measure it. If the data that you have is calibrated against perceived health, in a sense what your real health is may be less accurate in predicting the utilization from the data set. The context you are trying to do this in is important as real data or simply as risk indicators. The individual's self-perceived health has always been one of those sloppy measures.
We never really can tell you that an individual’s self-perceived report measures health, but it may measure the foreboding of impending doom that somebody has an inner sense for based on some change in some totally as yet undetected biochemical metabolic event in the brain.
Dr. Starfield said self-perceived health, the excellent, very good, good, fair, poor, you mentioned that that has relatively good predictability but he asked about children.
(Discussion follows about whether to use a 13 or 14-point scale)
Dr. Kane said it comes down to whether we are willing to invest probably ten years to collect a new round of data based on new measures yet to be introduced, or you're going to go with extant measures that may be less terrific than the best ones you could think of, but for which there is no data now that norms them. Often health services research is always doomed to use what's there, because those are the things for which we have correlations. But there is a pragmatism to doing that.
Dr. Iezzoni asked for other questions. One of the potential outcomes of our process that I articulated before was not a recommendation that we go forward with this, but a recommendation that it be studied further through a demonstration project. Dr. Kane are there any projects that have already so we don't need to recreate the wheel, but could give us that kind of demonstration project type of information that would be practical? And how accurate and costly would this information be?
Dr. Kane said the committee should look at the Social HMO-2, SHMO-2.
Dr. Iezzoni said we want to look at an entire population, not at the high end.
Dr. Kane said the other problem is that it's not done as part of a routine administrative data collection. It is a separate survey. I don't know any group that is currently collecting that data as an add-on to every visit. There were small studies that were done, again, not quite administrative. You know this literature better than I do, using the SF36 in office practices, and trying to get people to routinely collect that. Again, it was all self-selected, practices that did it. So what would happen if you tried to get it in every practice? But I think a review of that literature would be a good start for this committee.
[The meeting was recessed for lunch at 12:00 p.m., to reconvene at 12:45 p.m.]
Dr. Iezzoni recognized one audience comment.
Ms. Mary Harahan with ASPE said she came to the subcommittee because I have an interest in working with international organizations from a government and policy point of view, to try to get enough comparability in data to understand and measure disability trends for the purpose of defining policy interventions, from pension policy to health policy.
The second reason I'm here is because it is certainly clear to lots of us that we are requiring the collection of an awful lot of functional data through the OASIS, through the MDS, hopefully through the FIMs. The consequence is that you can't track people across a group of settings, where a lot of us think there are a lot of commonalities among the patients who are discharged from the hospitals into these settings, and where we don't think we'll ever get a handle either on cost effectiveness or quality if we can't track patients across settings. So now those purposes are incredibly different. What kinds of functional status measures do you need for clinical purposes? My comment is that it might be useful for this committee to weigh in, in trying to clarify and distinguish those purposes, all of which are legitimate.
Dr. Iezzoni thanks the commenter and agrees the committee will have to deal with the issue of diversity of purposes. She introduces the first afternoon speaker.
Agenda Item: Functional Assessment and Health Status: Lessons Learned
Donald Lollar, Ed.D., CDC
Dr. Lollar introduced himself as a public health professional today representing CDC's Disability and Health Branch. Before coming to CDC, he spent 25 years in clinical practice in rehabilitation psychology, working in community mental health, working in rehab hospitals, as well as private practice. If the first 50 years of the 20th century were devoted to mortality classification and measure, and the last 50 years of the century focused on morbidity, then the next few years ought to be spent on disability. He said he will try to answer some of the questions raised so far.
Question One asked what types of information on functional assessment and health status does our organization ideally look for and collect. Where does this type of data fit? Is the collection a priority? Our branch has been particularly interested in functional assessment of person level activities. Our unit's mission is to improve the health of people already with a disabling condition. If primary prevention of the specific condition is not one's aim, but rather improving the health of people who already may exhibit or have some kind of health problem, the diagnostic category is of less utility. In addition, it's clear diagnosis alone doesn't adequately represent a person's condition individually, and aggregate data from the group with the same diagnosis likewise does little to provide us better information. Therefore, the type of functional limitation with which we are most interested is of two types: person level activities, and societal participation activities.
Specifically, CDC’s Disability Unit is interested in assessing personal activities related to those eight areas that you see listed: learning; communication; simple movements, which is the term often used synonymously with functional limitations as in reaching, grasping, bending, stooping, et cetera; mobility or moving around; personal care; routine tasks, which are often called IADLs; behavior and sensory tasks; as well as societal participation in areas such as autonomous functioning, travel, work, school, community activities, leisure. Environmental factors generally look at physical, attitudinal, and policy issues that may affect someone's functioning. We have heard that since physicians don't seem to be able to do it well, is there a reason to complete any data collection? This morning’s speakers were not saying don’t do it, but it is important to understand the limitations.
Quality assurance could be improved by relating functional status or activity limitations, which is the negative part of what I would call functional status, to receipt of appropriate services and procedures. It also could look at HEDIS performance measures, to look at for example the percentage of individuals with severe mobility limitations who receive seating evaluations, or the incidence of skin sores, or other kinds of things that we don't do so much of now and try to eliminate disparities.
The Healthy People 2010 document to be unveiled this evening includes a disability status as one of its defining variables. It does not break down the functional differences in many of those data sets, but in fact if that were achievable in clinical records, it would add substantially to our understanding of those issues and the disparities that we believe most certainly do exist from a public health standpoint.
Question Two, does our organization currently collect data related to functional assessment and health status? What types, and does it include children? In addition, are different measures used for specific groups, and how are they selected and tested?
Because we use already existing data sets, what we have done is used the perspective of activity limitations as the basis for analyzing the health interview survey.
This includes ages 5 through adults. It suggests that 19.3 percent of people in the U.S. report at least on activity limitation ranging from 12 percent for children 5-17, up to 52 percent for persons over 65. While this is survey data, the analysis has convinced us that administrative data can be generated using this perspective.
Now I'll talk about more enclosed or circumscribed collection of data. While this is survey data -- in another analysis the new, Medical Expenditure Panel Survey (MEPS) data which came out two weeks ago. And also using -- is it appropriate in government to use the word 'gerry-rigged' for definitions of activity limitations. We got six of the eight categories mentioned previously. We have $5,500 per year expended on people who report an activity limitation; $1,200 expended on those without activity limitations. Now what this suggests is a lot more questions.
We are interested in knowing if that $5,500 is focused on the primary disabling condition, or in fact if some is related to secondary medical or other conditions that in fact are preventable. With appropriate public health interventions it is likely that $5,500 could be reduced.
And as I said, there are already numerous standardized instruments basically around the different professional disciplines. In communication issues you're going to see a lot of speech and language instruments. In mobility you're going to see the physical therapist involved with a lot of routine activities, and you're going to have occupational therapy. Psychology is involved with learning and behavior.
Question Three: Organization. What data should be collected, and what if that process was used to decide on functional assessment? In addition, are there other existing data sources?
Based on our mission to promote health and prevent secondary conditions among people with disabilities, collecting information about the functioning and limitations of personal activities is the most plausible way to assemble data about people who share common characteristics. That is, across diagnostic categories again. Once you move from rehab or acute care -- diagnosis is the primary way of collecting information. Once you move out of the rehab setting and into the rest of the real world, there are many more commonalities than differences among folks with varied diagnostic categories. Whether you have a mobility problem because of a spinal cord injury or multiple sclerosis or spina bifida, or the issues of pressure sores, patients all share things in common beyond just the diagnostic category.
The heart of the matter is that ICD codes address common etiology, but to assess characteristics of people, we need to know something more about what is going to contribute to their health and well being. We have talked to the Rehabilitation Services Administration, but they don't look at functional status per se in their evaluations. Social Security doesn't officially collect functional data, but the listing in Social Security certainly are imbued with functional status information as a core. Once you move toward the social participation the issues of environmental barriers become much more involved. If you don't have a ramp, that's a whole different level of environmental barrier than if you don't have a wheelchair, for example.
It is possible to measure a person's performance of activities moving around without the assistance and with the assistance. That's not a difficult thing usually to do at the personal level. But it also indicates whether or not the environment is being supportive of personal needs. I believe in using the professional, and looking at activity limitations, and using the professional as the way to do that from an administrative standpoint. My notion is that the most expeditious way to address this is through the HCFA-1500, through the patient encounter forms, and as a field in those forms.
Question Four: Quality of Care and Quality Assurance These are crucial, but we are concerned not only of medical and physical outcomes but about well being as defined by the World Health Organization. That includes family and social issues, emotional concerns and participation in work and community activities.
Standardization of the framework, instruments, terms and case definitions is important first.
You may only need a broad definition at one level for some purposes, like a learning disability. But for other purposes, for example clinical changes, you may need a much more detailed level of specificity. What kind of learning problem? Is it a memory problem? Is it an association problem? Is it problem-solving? Is it generalization? It's not an overwhelming challenge to try to work on that. Severity codes are another problem area
Question Five: Logistical Instruments. If overcoming logistical impediments were easy it would already have been done. It wouldn't take subcommittees on populations. Training professionals in coding, activity, limitation, severity, and assistance will be enormous. In my 25 years of clinical experience I have completed some 35,000 HCFA forms. It is possible to learn the codes. It may take more time. It may take more money. But the question is, is health going to be improved? That is the bottom line. The committee cannot afford to forget that fact.
Advice and Recommendations -- In addition to our contacts with professional organizations, the CDC is in contact with Kaiser Permanente of Northern California about a pilot project to assess the potential for inclusion of activity limitation codes. Dr. Lollar recommended the acceptance of the ICIDH to the classification of functioning and disability that comes out of WHO, also the conservator of ICD and challenged the subcommittee to look seriously at how to achieve this inclusion, beginning with the professional and scientific issues and proceeding to address the political issues.
He said future plans include the development of tools to measure activity limitations, societal participation, and environmental barriers in surveys and on clinical records. Work with the United States DISTAT Group and the U.N. will continue as will work with NCHS and HCFA, professional organizations, and insurers to insure the continuity of data within the U.S. Although inclusion on patient encounter forms presents a major challenge it is clear the current level of information does not do justice to the needs and health of people with limitations.
Dr. Iezzoni opens the floor for questions.
Dr. Starfield asks in your MEPS study how many questions were used?
Dr. Lollar: I think about 30. Dr. John Huff has the preliminary analysis.
Agenda Item: Functional Assessment and Health Status: Lessons Learned
Nancy Whitelaw, Ph.D., The National Council on the Aging
Dr. Whitelaw described her nine years at the Henry Ford Health System in Detroit, which is a large vertically-integrated system, serving about 800,000 people in southeast Michigan. The Ford system also has a 500,000 member not-for-profit HMO, including a Medicare risk contract there, operates a few nursing homes and has a large home care agency. In her official capacity as associate director of the center for health systems studies, Dr. Whitelaw oversaw demonstration programs designed to improve care for older people and became increasingly involved in strategic planning and in the operational side. She helped shape the development of the Medicare risk program’s service package and other initiatives to care for older adults.
Dr. Whitelaw called her presentation a “lessons learned” talk with insights from Henry Ford and the National Council on the Aging and an array of national committees investigating these issues, including the NCQA and HCFA, the Health of Seniors measure as well as the National Chronic Care Consortium. Her primary experience relates to functional assessment deals with assessing seniors and older adults, which is a very clinical driven initiative. Functional assessments were used primarily by nurse practitioners in developing and implementing care plans. They were not protocol or guideline driven, although they did have some general guidelines. The total assessments were available in the chart. There is a lot of debate about what goes in a chart. Dr. Whitelaw said notes were dictated in the electronic medical record to supplement those in the chart. This was a research project, so researchers also measured functional status with a mail survey to about 1,000 frail elderly in both a treatment and a comparison group. They did that at baseline and 12 months later.
The Geriatric Health Systems in San Francisco did a baseline assessment of new enrollees, and provided data organized into a one-page summary. High-risk individuals were the primary focus of the screening at time of enrollment, but this data was also used for strategic planning, for development of specific program initiatives for people with memory loss, or training clinicians on urinary incontinence, etc.
Eventually this tool was replaced with the PRA, the University of Minnesota sort of Chad Bolt tool that could be administered by phone and yield much quicker, albeit, more limited, results.
Dr. Whitelaw said even at a place like Henry Ford, representing the high end of America's health care, there is still no organized strategy for standardizing data collection of any kind, much less the collection of functional status information. Whitelaw said the BBA generated more than 1 million extra sheets of paper at the large home care agency run by Henry Ford. She said people whose skills are supposed to be devoted to the improvement of patient outcomes are spending an inordinate amount of time filling out paperwork with almost nobody paying any attention to the quality of that, or the standardization of it, let alone its utility. The clinical, regulatory and/or accreditation bodies that influence different parts of the health system rarely talk to one another about what data they would like collected.
She said caregivers refused to talk about how absurd it is that the discharge form filled out at hospital can’t possibly be used to help get the same person admitted to a nursing home or home care program. This is absurd, and a time waster, especially when delivery of timely, appropriate care is the real issue. Every discipline from orthopedics to low back pain to asthma and diabetes has a specific form or tools which make standardization very difficult.She talked about the tumultuous marketplace where hospitals, medical groups and hospices are acquired and dropped on a daily basis and said, “we can barely standardize the payroll system or the benefits system, let alone the data collection system.
She enumerated some issues being confronted:
Whitelaw said her group ultimately abandoned the baseline assessments of enrollees in our Medicare risk program, done by GHS and all but abandoned the PRA. She said her group lost $60 million in 1998 and will incur about a $200 million financial hit due to the balanced budget amendment over a five-year period of time and Medicaid managed care.
She said in her nine years at Henry Ford, they built about 12 model care programs for older people in a variety of different settings and sectors, including case management, team-based geriatrics, and inpatient geriatric service, a PACE program, et cetera. There are only two of those left. All the rest were closed in the last two years due to financial losses. It takes a tremendous amount of time, money and effort to train people to change the medical culture.
Dr. Whitelaw also was concerned with development of the continuum of care. She said those patients most likely to benefit from good functional assessment are people who use multiple sites of care. She shared some concerns about the Health of Seniors measure. There are a lot of factors, particularly around older people, that contribute to their functional abilities and functional deficits and the medical care they receive. She believes we need to have a much clearer idea about exactly what aspects of function the medical care system per se should be held accountable for. She said providers are really ill equipped and conflicted about how to address functional status issues. General Motors feels total freedom to demand that Health Alliance Plan, and therefore the Ford Medical Group collect whatever information they want, regardless of what they want or what anybody else may want. They are a purchaser. They can make these same demands, and they do. She said it is difficult, perhaps impossible to use a single instrument for strategic planning, risk adjustment, screening, care plan development, performance measurement, et cetera and said the Health of Seniors measure may serve as an audit the performance of health plans. What drives people to fill out a standard HCFA form and to do it accurately is payment. The potential for reimbursement is key.
Whitelaw said the method and timing of data collection as they relate to health internentions are other issues.Based on nine years of studying these issues, Whitelaw made the following recommendations:
Dr. Iezzoni opens the floor to questions.
Mr. Handler asked Dr. Lollar whether it wouldn’t be possible to use the HCFA-1500 form for certain types of functional assessments, not the whole range. He pointed out that the Census Bureau collects data every month using the same form, but adding and dropping questions in supplemental follow-ups. He asked if the HCFA form could be uses for certain assessments, for certain types of disabilities, for a year and then hone in on certain things for that period of time.
Dr. Iezzoni said before we talk about mixing and matching from year-to-year, we have to figure out what we would do in year one.
Dr. Newacheck asked presenters to comment on whether you think this initiative to consider adding functional status as part of the administrative data systems is a worthwhile effort. Should the focus be risk adjustment or payment levels? Should it be for quality improvement? Should it be for statistical epidemiologic purposes, like for example reporting on 2010 objectives? Or some combination?
Dr. Whitelaw said she has fairly strong reservations as someone working on behalf of older people since 1971. Most important to her career has been how to help well- meaning and solid providers do a better job serving populations. She said attention to functional status could lead to better outcomes, but it will not get there by a mandatory requirement of the coding in an administrative database.
Dr. Whitelaw said her group’s ambulatory social workers were just laid off. “Our physicians are doing 10 and 15 minute visits. And they do not have the skills or the time to do this. They don't have the time to do it. I don't think they should do it. Take something like medications which we know contribute to functional status. If a pharmacist cannot get reimbursed for reviewing the medications for people on six or eight or nine or more drugs then it is not going to happen.”
She said if HCFA and large purchasers want things done, they need to figure out ways to help pay for it. She urged a closer look at the delivery system issue, especially through either the HMO Research Network or the Chronic Care Consortium. She said there are a group of providers who would be willing to work with the committee to try and solve this, but it would be more incremental.
Dr. Lollar said he believes the medical care reimbursement system is under sufficient siege and that the subcommittee on populations is probably not going to address all questions. But long term he said it’s important to explore the value of adding functional status from a professional and scientific standpoint. He said if HCFA forms of certain medical specialties or diagnoses required this data, “you would get it.” He encouraged the committee to “think hard before deciding it’s not worth even pursuing.”
Dr. Iezzoni asked what it is the biggest barrier to having a conceptual model of the data that should be collected across the continuum of care? Are the HCFA “fiefdoms” a conceptual barrier or a territorial barrier?
Dr. Whitelaw said when she had a subcommittee on this at Ford, representatives from rehab, nursing homes and the health plan all recommended a standard format for a progressive set of data for this targeted population group.
Dr. Iezzoni thanked all presenters and called the second panel to the table.
Agenda Item: Functional Assessment: Risk Adjustment and Rehabilitation
Focus
Gretchen Swanson, D.P.T., M.P.H., Western University of Health Sciences
Dr. Swanson said she was asked to participate because of the use of function in the adjudication process. She said our health care system needs health data. Where the functional data comes from is crucial, and the patient is a huge source of this information. A key question: is the service warranted for the condition set remains. She brought up the concept of “medical necessity” and the burden it places on providers to justify that medical services are actually necessary and appropriate for a patient.
Dr. Swanson used Donald Patrick’s definition of health as “a relationship between current and future function” to begin a larger discussion of medical necessity and said if the country is going to move to a secondary prevention model of health care, it needs to find a way to reduce the potential for future loss of function. Data is needed to manage and monitor risk, to improve future function and to optimize activity. It is a model for healthy aging in some ways. She mentioned Medicare claims attachment form 700 and the Medicare form UB-92 as possible forms which could be use in a convenient, cost- effective way to collect additional data. She said this variable should be applicable across payer types, so persons can go from a commercial carrier to workers compensation to a federal health program and also used for adjudication and quality of care.
For example, she said data making it easier to manage a person with hypertension or diabetes could be contained on a single card or document, using ICIDH codes. The coding on the document would convey a variety of information from how difficult this particular person’s disease is to manage, to an code that tells how impaired they are and how treatment is likely to improve function. Dr. Swanson said the payoff for providers, patients and caregivers is the functional picture.
Dr. Iezzoni introduced the next speaker.
Agenda Item: Functional Assessment Risk Assessment and Rehabilitation
Focus
Jinnet Fowles, Ph.D
Dr. Fowles introduced herself as a health services researcher who manages a research organization affiliated with a vertically-integrated delivery system. She talked about the functional status measurement at HealthSystem, Minnesota as having two threads: the quality of improvement thread and a risk adjustment for financial or payment thread.
The orthopedics department at HealthSystem began collecting health status information in 1988 on patients undergoing total hip arthoplasty because they wanted to help in their daily activities and to be able to compare their patient outcomes with those of other facilities. The purchaser coalition, the Buyers Health Care Action Group, also wanted a demonstration of improved outcomes.
Certain mistakes made the orthopedic pilot a failure, including a sample size that was too small; an epidemic of missing or incomplete data, including such basic things as a patient’s height and weight; the pre-operative part of the form was missing in one-fifth of the cases. Only the site with a continuous project manager monitoring data collection had complete data. There was also a variation in the way doctors did follow-up visits. Finally, three years into the study, one site unilaterally modified its forms, leading to non- comparable data.
Dr. Fowles echoed the concerns of Dr. Whitelaw regarding the complexities of trying to collect this type of data, even with institutional support and a real interest in outcomes research. For two years the ophthalmology department collected both the SF-36 and disease-specific functional status measure for patients undergoing cataract surgery, but never managed to develop a reliable mechanism for routinely providing feedback to doctors.
She said the situation was not uniformly bleak and pointed to the inpatient rehabilitative medicine department where the functional independence measure, or FIM, was incorporated into routine care on admission and into discharge preparation. Dr. Fowles said the data are maintained separately, and in fact not compiled. She said while the department is aware of the availability of a comparative database, the Uniform Data System for Rehab Medicine, UDS, it has been unable to convince hospital administration that the comparative information is worth the cost of acquisition. Dr. Fowles said HSM is facing a $10-20 million shortfall for 1999, a major financial dilemma.
She said what drives this organization to collect some kinds of data and not others is largely financial management. Billing is an especially critical data point in commanding resources. Business management, whether it's regulation or accreditation or marketing, also are factors. She said annually the HSM sets strategic objectives from which flow the objectives for each department, so that in theory there is a system for prioritizing what kinds of data are collected. For the year 2000 Fowles said there are four information management projects: a new billing system; service-related information management products relative to monitoring phone access; a database for radiology, which is driven by the need to more closely manage the high resource use in radiology; and fourth, a database for cardiology, deemed to be a core product for the institution.
Next, Fowles discussed marketing issues and notes that cardiology has a privileged niche system that includes functional status measures because of its marketing priority for the organization. The cardiology's data system is not on-line yet, but the purchasing decision is being made. Such a system has been deemed critical for cardiology, not only because of its designation as a core product, but also because the care delivery is spread over many sites -- clinic, hospital, noninvasive lab, nuclear imaging. Patients are often seen at all of these sites. She referred the committee to a study she conducted for the Physician Payment Review Commission. The data set included the results of a health status survey, the SF-36 for a sample of adults 18-64, and a sample of the elderly 65 and older.
Dr. Fowles said the study’s limitations included: its relatively small sample size, and the limited size of the population over 65. The study population did not include Medicaid recipients or children younger than 18. A paper detailing the study’s results was given to committee members. Researchers were also concerned about the role of non-responders. The crucial issue of evaluating the usefulness of any kind of health status as a predictor for total health expenditure for groups of enrollees is the extent to which this kind of non- response such as we observed, results in biased predictions about what the expenses will be in the future. Lack of language facility increases bias.
Referring to earlier remarks by Dr. Kane about corruptibility, Dr. Fowles said the issue of gaming surveys to increase payments has not been addressed and suggested the committee might do a pilot on to test how surveys could be gamed, even using patient coaching. Dr. Fowles said there is no risk adjustment approach that is free from either intentional or unintentional bias.
Other criteria to consider in selecting a risk assessment approach includes: ease of data collection, cost of collection, its acceptability to providers, and in particular, the compatibility with rating and payment timelines. Dr. Whitelaw talked about the timing of different kinds of health status information. Dr. Fowles directed committee members to detailed information on these issues in the packet.
In closing, Dr. Fowles noted HSM is being paid on a health-based risk adjusted basis using ICD-9 codes, and it is a miracle what is happening to the ambulatory diagnosis coding. She said it is crucial to be extremely clear about the question(s) the committee wants to answer. “If you can't get the question right, everything else is a mish-mash of stuff, and you won’t know what you've got.” Dr. Fowles is very wary of requiring assessment in lieu of actually doing interventions.
Agenda Item: Functional Assessment: Risk Adjustment and Rehabilitation
Focus
Margaret Stineman, M.D., University of Pennsylvania
Dr. Stineman, a practicing physiatrist from the University of Pennsylvania and principal investigator on the project that led to the function-related growth system, now being modified and implemented by HCFA, said she would answer questions from the morning session because live data from her study will show the committee how functional status was actually used.
Dr. Stineman said the rehab industry has had the uniform data system for medical rehabilitation since about 1987. At one time about 60 percent of the rehab facilities around the country were using it so they could create national norms. The FIM was endorsed by numerous national organizations with the explicit desire to create a functional status instrument that would be appropriate for acute rehabilitation, defined as the period of time when a person has a new onset disability, and they have the potential for functional restoration. The data measures the type of activities necessary to get a person back into the community. The FIM needs to measure change, so there is a seven- level scale which is most sensitive at admission and at discharge. After using FIM for 10 years, Dr. Stineman said her clinical teams now have benchmarks which they use at quarterly meetings to achieve the best patient parameters which they can compare over time. Those parameters stay in the system until any problems identified are solved.
She recommended the committee use standard parameters that are always measured, that don't change, that are fundamental as well as sets of parameters that are adjusted based on the issues identified in the clinical population.
Dr. Stineman proceeded to show slides and to comment on the data presented. They included information on length of stays, which averaged 33.1 days in 1991-92 and were subsequently reduced by 1995 to be more cost effective. Soon after that therapists and attending physicians complained that the length of approved visit had been so reduced that it was impossible to restore patients to optimal function. Average length of stays were then adjusted upwards based on negotiations and program evaluations.
Referring to another slide, Dr. Stineman said a decision was made to encourage the admission of more severe patients, because the cost containment pressures to get people in and get people out fast was eroding the type of quality of care being provided. We were turning away patients who really needed to be in the hospital. In 1996-97, the case mix was less severe than the national norm. But at discharge they had the same level of disability. By the most recent year the functional outcome at discharge had improved, even among the most severely disabled and she attributed this to flexibility in the system which allowed those patients with the potential to improve, more time to do so.
Community discharge rates were discussed and she said people who did not have easily available caregivers were not excluded. She said the last slide is the most exciting because it looks at case mix adjustments. She said her team has FRG systems that will predict length of stay based on the patient's rehab impairment categories, their level of physical disability at admission, and their level of cognitive disability at admission. She said the slide shows the discharge motor FIM FRGs, which is the module that predicts outcome. And it predicts the level of physical disability at the time of discharge from the rehab facility for groups of people who have come in with similar clinical characteristics. She said it is important to look at physical disability and discharge data because it is really what determines the degree to which a person is going to need help at home, whether or not they will be able to function at home, and have sufficient help. Using an FIM scale, Dr. Stineman described how the graph charts dependency on X and Y axes, comparing patients across several clinical and other variables. This kind of comparison could be a powerful tool in designing services.
Dr. Stineman concluded by saying that functional status is extremely important for improving the health care of all Americans, but with some caveats. In the rehab settings, in the long-term care settings, in the home care settings this is true, but the committee needs to be sensitive to costs. She said the key is to design very simple trigger questions to ask patients and then if the answers are affirmative to have a supplemental series of questions. She noted the VA system did develop an FRG-adjusted clinical guideline where they used the FRG system for stroke and amputees, and established benchmarks that were case mix adjusted. They did it across the full post-acute care continuum, not just acute rehab and the findings are very appropriate for the committee to consider.
She said if the committee wants to get accurate functional status information, how the question is asked is as important of who you ask. She said sometimes doctors with waiting rooms bulging with patients are asked to fill out functional status reports on someone they saw six months earlier and when the medical records are at a remote facility blocks from the doctor’s office. There will much less accuracy under these circumstances, Dr. Stineman said. She said the health care system in many ways is broken because doctors do not have the time to do all tasks, including data collection.
Dr. Iezzoni recessed the meeting for 15 minutes and resumed it at 3:20 p.m. at which point she introduced the three final speakers.
Agenda Item: Functional Assessment: Selected Focus Areas
Ruth Stein, M.D., Albert Einstein College of Medicine
Dr. Stein, a pediatrician who has spent two decades looking at the care of children with chronic physical conditions, focused her remarks on some of the special ways clinicians assess the function of children and how this affects care choices.
She said the committee needs to remember children are not little adults and they are not all the same. Instead of infancy, early childhood, school-aged children, adolescents, we need to see different functioning levels. Children’s functioning is interdependent with an adult caretaker. Learning disabilities also are a factor in childhood morbidity as are reliance on developmental norms, which are not accurate measures of an individual’s potential.
Adult standards of measuring function are not appropriate so the committee must think in terms of developmental issues, which preclude static measurement. In addition, the cognitive changes that take place in children's understanding of the questions that they are asked, and of their understanding of what other kids do, make it very hard for us to rely on their self-report, and increase our dependence on respondents, especially in early childhood. When the reality of a disabled child is added to the mix, or an individual who also may have communication problems that involve sensory, motor or some other deviations, it makes it very hard even to think about an age group where there are no data collection problems. Data collection surveys must take behavioral inventories of children because their health status is affected both by the illness or condition or impairment, and by its treatment.
She said many kids try to do a lot of exploratory things, and to take on new tasks. Activities that are measured need to be able to reflect the range of circumstances under which it would be appropriate to know about the individual's performance. The task of childhood, the work of childhood is development.
Some controversial questions for the committee to consider:
Do we want disease-specific measures? Or non-categorical, non-disease measures? Dr. Stein advocated for a non-disease approach because of the epidemiology and the presence of co-morbidities, but said that is part of the debate.
Do we want to focus more on capacity or performance, on depth or on breadth? Different measures have different ability to distinguish parts of the spectrum. Another question that comes up frequently, particularly with children with organic medical disease is static, versus fluctuating, functioning. Dr. Stein said there is some evidence that kids with the fluctuating functioning have the most long-term morbidity. Do we want their best, their worst, the range, their median or mean?
Then there are questions about an age-specific versus a broad-range measure. For the sake of consistency we would like to have a broad range measure, but that's hard to achieve. And then there is an issue of what are the future risks? Should they be incorporated into an assessment of a child's functioning? Then are we talking about broad or narrow dimensions. Do we want to focus primarily on the physical? If so, we're going to leave out the psychological, the social, and the educational functioning, which is the source of much morbidity in our child population. Finally, she said there is the issue of whether we should be child-specific or take into account the impact of the caretaker or the independent functioning of the child and caretaker?
She said in many instances it will not be possible to totally eliminate chronic diseases. But the functioning of individuals with chronic conditions can be improved. Dr. Stein said emphatically that ADLS don't work in the assessment of child functioning especially under age 5. We know 4.9 percent of children are unable to perform major activities when they are defined as play or school, and that 28.8 percent on the NHIS disability supplement were limited in major activities of play or school. So if only ADLs are measured, we are not doing the job for children. She suggested the committee study the child health questionnaire developed by Jean Landgraf and her group, because it includes both a child and a parent version and goes through the whole age spectrum.
She mentioned Barbara Starfield’s CHIP adolescent version for adolescents over the age of 11, although work is continuing to shorten the measure which now takes 45 minutes. She also mentioned the FS II(R), a continuous measure from 0 to 16 years of age which she helped develop. The Denver and Vineland assessment tools measure mental health for children above age 4 or 5 and another by the Foundation for Accountability called the Living with Illness Measure to measure chronic conditions. Dr. Stein said the “four Ds of childhood” have been suggested as a way of remembering the big difference about children: developmental change; the dependency on parents and other adults; the differential; the differential epidemiology; and the difference in demographic patterns.
In summation she said, child health care and protocols measuring functioning in children is a small proportion of the annual cost of health care. Most projects are afterthoughts. Little attention is paid to the cumulative financial impact of the childhood impairment over the lifetime, which is not so inexpensive. These measures are needed very urgently, and will not happen without substantial financial support the psychometric work.
Dr. Iezzoni introduces the next speaker.
Agenda Item: Functional Assessment: Selected Focus Areas
Alice Kroliczak, Ph.D., HRSA
Dr. Kroliczak began her presentation on the individuals the HIV/AIDS Bureau at HRSA serves by saying they are not currently doing functional assessments. The population is unique in that it is served through the Ryan White Care Act of 1990, which funds about $6 billion a year to about 500 grantees. The HRSA program helps those with full-blown AIDS who have neither private insurance or Medicaid. Each of the grantees has a whole separate network of service providers, ranging from primary care providers to transportation bus drivers, to support services.
The different title programs fund different eligible populations from that larger group. Title I funding goes to EMAs that are eligible, with large HIV-positive and AIDS rates. Title II goes to states and territories in the United States, every one of which is funded. Under Title III, public and non-profit entities for outpatient early intervention re funded and under Title IV we fund public and private non-profit entities for projects that will coordinate services to improve access and availability of services and research for children, youth, women, and families and gaining access to clinical trials.
In the HIV/AIDS Bureau we do different types of data collection, but our main type of data collection is collecting program data as part of our ongoing monitoring of the $6 billion that we administer every year. We also collection information from program data for program evaluation purposes, but we fund about six small local evaluations a year, each of which is about $50,000. And so in the attempt to encourage local sites to do their own program evaluations, we can only offer about $300,000 a year.
Dr. Kroliczak said her group had a study done by the Harvard School of Public Health and found that one-third of the data they collect annually is duplicated data.
She said that spending energy on data collection subtracts from patient services. The Care Act allows for a maximum of 5 to 10 percent of a grantees’s funds in any one year for administrative costs and that would include data collection. She said the clients her group serves are unlikely to voluntarily fill out surveys or self-report on questions of functional status because of a basic lack of trust and a history of trauma, mental illness, limited literacy, education and/or homelessness. Similarly it is difficult to determine good outcomes at this point because the population it looking at life or death.
Dr. Iezzoni thanked Dr. Kroliczak for her remarks especially as they pertain to questions of confidentiality and privacy and introduced the final speaker.
Agenda Item: Functional Assessment: Selected Focus Areas
Sally Kaplan, Ph.D., Medicare Payment Advisory Commission
Dr. Kaplan began by explaining that the Medicare Payment Advisory Commission has a broad mandate to consider, develop, review, and advise Congress on improvements to the Medicare program. In addition to advising Congress on payment issues, MedPAC is tasked with analyzing access to care, quality of care, and other issues. As such, MedPAC does not collect original data, but is a huge user of Medicare administrative data and the group has “huge concerns” about functional status in the post-acute area.
Earlier, Dr. Kane told the committee how functional status explains a great amount of variation in resource use and therefore payment. The BBA and the Balanced Budget Refinement Act mandated new post-acute payments systems for basically every aspect of post-acute care. They also mandated risk adjustment payment for Medicare+Choice, which also has an effect, because that includes special programs such as PACE, SHMO, SHMO II, Evercare. Most of those special programs are now exempt from risk adjustment, but there is a question as to whether they will be exempt perpetually.
Dr. Kaplan said the main point she wanted to share was the diverse ways we are measuring functional status in post-acute arenas. She proceeded to show a series of slides to illustrate how difficult it can be to conduct analyses across settings, especially in the SNFs or skilled nursing facilities. Here a questionnaire 300 questions long is used to assess patients and from this survey the payment is derived. She contrasted the scoring mechanisms used on various surveys, including the MDS-PAC and the OASIS, used by home health agencies.
MedPAC believes it would be extremely useful to have standardization of functional status measures at least in post-acute care so that if similar patients are treated in different post-acute settings, or if patients are treated in successive post-acute care settings, we would have a means of measuring them.
Dr. Kaplan talked about the difficulty in an integrated system when patients move from one modality to another, and several different measuring systems. Dr. Iezzoni asked Dr. Kaplan the same question as Dr. Whitelaw, i.e. “What is the barrier to doing this? To doing what seems totally rational? Is it a conceptual barrier, or is it the fiefdom barrier?”
Dr. Kaplan did not believe it is a fiefdom barrier. HCFA decided to develop these systems and let out an RFP. A group of researchers has responded to that RFP, and we always know a better way to do something, rather than taking something that has been used, that had been tested for reliability, validity, was universally used, and incorporating it. There were also issues of copyright in the past that may have applied as well. So we ended up with all these different tracts. She said Dr. Kane is working on a project that theoretically is going to make it all, all right, but she said it will take a massive effort to make payment across post-acute settings. She said functional status information is critical to pay these providers for the care that they provide to these beneficiaries. But it also is crucial to be able to assess quality.
Dr. Iezzoni asked,” Who was saying they have a million pages printed out for doing OASIS on the home care side?”
Dr. Kaplan replied: “The OASIS is 79 questions and 18 questions are used for payment. But then the other questions are used for quality initiatives.
Dr. Kaplan said the MDS was basically developed for nursing homes and care planning, and now is being used to pay skilled nursing facilities for Medicare beneficiaries.
Dr. Stineman said there is concern with using instruments that were developed for one type of care, and trying to make them work for another type of care. Whereas, the FIM is basically something therapists use in the PT or the OT gym, and actually see the patients, whether or not they can perform a set task in a standard way.
Dr. Kaplan said we are encouraging HCFA to move to one functional status for all the post-acute settings. There is going to have to be dual data collection on functional status once a decision is made as to which is best to use.
Dr. Starfield asks if HCFA has any interest in functional status assessment for people who are neither in home care nor in post-care facilities, any interest in most of your Medicare patients' functional status assessment?
Dr. Kaplan believes there is interest in it. But if you have this big a problem with the millions of beneficiaries who use post-acute care, and have all these different ways of measuring functional status, I would hope you would standardize.
Ms. Rimes brings up the HCFA initiative, the Health of Seniors. Those are all separate and unconversational discussions across HCFA.
Dr. Newacheck asks Dr. Stein: if we need to have a separate measure for children, or we can get by with one of the measures, perhaps using the ICIDH, that has been developed to use across the life-span.
Dr. Stein said the ICIDH has a promise for children. Many of us hope it will work so we will have a system that will run across the life spectrum. I also think the perfect is always the enemy of the good. We need to get started in the concept of measuring functioning, whether we have a perfect measure or not. Because it will only be through that we will get some refinement, and some better measures. I don't think that the diagnostic approach works.
Dr. Newacheck asked if Dr. Stein recommends any of the current functional status measures for the committee to pursue in the case of children?
Dr. Stein said there are really only two: the one that I helped develop and the CHQ. The CHQ is a very multidimensional functional measure in which it is not clear what the total score means, to be very blunt. It is being marketed very heavily, and has been translated into many languages, but it is 50 items long. It does not measure compensation issues at all, which is important. Of existing measures, the FS II(R) does as good a job, but I think we need another generation of measures.
Dr. Swanson asked Dr. Kaplan whether knowing the test score is important? A lot of these tools referred to today are composite scores. We will talk more about the ICIDH tomorrow, which is not a test score, it's a description. It's a conclusion, a classification system. I think it would be worthwhile to distinguish tomorrow the importance of OASIS, FIM, MDS are the composite scores of many different functional variables that come forward under different domains of function.
Dr. Kaplan: The OASIS and the MDS and the FIM -- well, I can really speak to as whether they are now being used or will be used as of October 1 of this year. The SIMS is already being used to pay providers. I cannot remember whether it pays on a composite score, or whether sometimes those scores are parsed out in different ways.
Dr. Iezzoni asked for further comments or questions.
Dr. Starfield (who cannot attend tomorrow’s session) said meeting was extremely helpful, because it convinced me we shouldn't be overly ambitious. It also suggested that maybe there is something that we can come up with that is only one or two questions.
Ms. Coltin said for some purposes a single measure at a point in time is sufficient if it is a case mix adjustment. But for quality improvement you need to look at changed scores over time. The detail in the gradients that you may need to measure when you are looking for change may be far finer than what you would need if you were just looking at the point in time. I think we are really going to be challenged to try to decide which way we want to go.
Dr. Iezzoni adjourned the meeting at 4:10 p.m. The Jan. 25, 2000 session did not occur due to a snowstorm in Washington, D.C.
I hereby certify that, to the best of my knowledge, the foregoing summary of minutes are accurate and complete.
/s/Lisa I. Iezzoni, M.D., M.S. September 17, 2000
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Chair Date