here, middle aged, bald, white males. not all of us. but we are the -- obviously the trial, the people in the trial. and we don't reflect the makeup of society but with a registry you see actually what we're doing and how we're treating. data, data-specific, give gate data to physician so physician can act on it and greater physician and patient interaction and shared decision making. thank you. >> great. thank you, jim. diane rowland, in our capacity, both at kaiser family foundation and mack pack, you've been thinking about high-cost

patients and challenges to delivering coordinated care, improving health outcomes and lowering the costs. so tell us about that thinking. >> thank you, susan. i think i can just do it with this. this arrow? >> well, i always come to these forums and we talk a lot about the medicare program and sometimes we talk about private insurance and we don't always when we talk about health care costs bring the medicaid program into perspective. i just wanted to remind us about why medicaid takes care of lot of people with chronic illness and why it spends a lot of its resources on that population. and of course, this is our most classic slide, showing that one in four beneficiaries on the medicaid program are disabled

and elderly but account for two-thirds of the spending. and a large reason for that, of course, is that there is a lot of long-term care expenditure on behalf of the populations. but let's focus for just one minute on that under 65 disability population for medicaid and we like to talk these days a lot as melanie mentioned about the dual eligible population. there are 9 million people with disabilities on medicaid not elderly and mote of those people are actually not dual eligibles, only 2 million of them are dual eligibles. one of the challenges in the program, and ken alluded to it to get better coordinated care, better services to the disability population for which medicaid has whole responsibility and where it has

a range of services, care coordination, case management or part of the medicaid benefit package, and could be much more effectively used on the pop population with disabilities. this is a slide, we're used to seeing in every part of our health care system. there's only a few people who account for the majority of any spending. and in medicaid the top 5% really account for a substantial share of that spending and the few people there that are children and adults are relatively small but high cost. really there is largely driven by the disability population. when we think about the disabled on medicaid we have to remember they include substantial share of the population with severe mental illness and it's often when you look at who is a high cost beneficiary, it's the combination of one or another of the disabling conditions combined with mental illness. and so a diabetic, i think ken looked at this, someone with diabetes is being treated with a mental illness is at a higher cost and less likely to follow treatment protocols than someone who is just a diabetic.

so that is a real challenge and especially as ken even alluded to, much of the medicaid care coordination through managed care carves out mental health and manages it totally separately, and now much of the drug costs is also carved out in many places, so that you don't have the integration for that disability population that could help. but we are focused increasingly -- i have to make sure i get the right arrow -- increasingly today on the share of medicaid spending that goes for the dual eligible population. and as you see from this slide, there are about 15% of total medicaid enrollment are people who have both medicaid and medicare coverage, but the -- and they account for 38% of overall spending. and a huge part of that is long-term care services. but i'd like to point out really if you're trying to manage that low income, disabled population there's another 10% of the medicaid population that are disabled and a few nonmedicare

eligible aged that account for another 28% spending. so i would say within the medicaid program we really need to look at how to really better manage and actually there's a -- an ability in medicaid to do more on the preventive side, more on preventive services, more sending people to treatment programs like the diabetes management program there's. so the opportunity within medicaid is broader. and finally, though, if we look at the people who are dual eligibles, they really have a substantial share of chronic illnesses, 55% of three or more. i also think that a lot of medicare beneficiaries have very similar levels of functional impairment. i mean, it's different but it's not so substantially different on chronic illness. it really involves really thinking about how you manage the cognitively or mentally

impaired pause that's where the biggest difference between the dual eligible population and other medicare beneficiaries occurs. so in conclusion, we're really now looking at -- and melanie's alluded to being able to put together medicare and medicaid spending. in this analysis with the urban institute, within the dual eligible population are there some higher spenders and some who are lower. and we found if you look at top 10% of medicare spenders and 10% of medicaid spender there's are somewhat different people though both dual eligibles and only 100,000 people fall into the category of being a high spender in both medicare and medicaid. and that's largely because, as we need to look forward at different ways to look at these populations, the subgroup analysis which melanie alluded to is so critical. you see that the top spenders in medicare are really top spenders because of their acute care utilization and those are

services that medicare can and should be able to better control whereas the top spenders that end up on medicaid are often in nursing facilities and are also people who are using long-term care services in the community. and they actually spent a little less on acute care because their big spending is on long-term care. in conclusion, i think as we look at and try to figure out how to better manage both technology, where there's not a lot of it unfortunately on the long-term care side, so most of the technology care would come in looking at acute care services we need to also think about how to manage different types of chronically ill patients and how the two programs can either work together better or work better within each program for the chronically ill. and i think that's where we will see better outcomes and lower costs if we can really zoom in on the disability populations and the differences by subgroup. thanks.

>> thanks so much, diane. well, bruce chernof of s.c.a.n. foundation, you've been thinking a lot about the same group that we've been discuss, those with rising preference of chronic disease and the age. what else do we need to know about this population? >> thank you, susan. i want to pick up on where diane left off. i think the last couple of slides are incredibly important in our thinking here. and as we wait for the slides to come up, we're almost there, folks, that looks good. terrific. so as i begin my presentation i wanted to start in a similar

place, which is that you have to really look at the folks who are getting care and what their needs are, and that really helps us think about targeting and building better programs. and i think building off this notion that the medicare and medicaid high spenders are different is a critically important thing for everybody to take away today. and my first slide sort of picks up on that point which is, those with chronic conditions, that's only hal of the battle. those with chronic conditions and functional limitations together drive a lot more of the high cost medicare spending, and we'll come to why that is in a second. we spent a lot of time talking about people and their diseases, being defined by your disease. well the reality is that, function is an incredibly important piece of this, your ability not only to care for yourself in a medical context but care for yourself in a

personal context. and when you start to factor in this notion of function, function in the way you live your life, not the way you live your medical life, i want to pick up on something joe said at the very beginning and turn it on its head. consumers aren't patients in waiting. patients are people in waiting. trying to get back to the place where most people, even those chronically ill, those who have cognitive impairments or serious mental illness, they're people most of the time they spend their time out and about in the world and that world is not confined by hospital beds or doctor offices or triage centers. thinking of the role that function plays in disease and the way that function plays a role in people's lives is incredibly important if we're going to look how we build effective programs and target appropriately. and this chart simply goes on to say that when you add in functional impairments, regardless of the number of chronic conditions, functional impairments is a really important cost driver in the lives of with chronic illnesses

regardless of the chronic conditions that they have. again, echoing off of diane's point which is how do medicare and medicaid hold hands? i know why you're here, it's this slide, who are the duals who are the preduals and what this slide start to raise is this issue of preduals what is a good dual program look like? when you look at individual whose have chronic illnesses and substantial functional limitations, half of them are duals but roughly half of them are not. these are folks who run the risk of spending down, because their medical problems get them by the tale and becoming duals. in an environment as we watch boomers start their retirement, we see folks with fewer financial resources and they might have had earlier on, this becomes a critical problem sway cost driver over the next 10 or 15 years for us.

so when we in the s.c.a.n. foundation talk with folks about what they really want we decided that we would do almost 20 focus groups across the country last year and a series of polls, and what we did was to choose to talk with individuals who are 45 to 65 and really in a care giving role and throws 65 plus who are either care giving or care receiving. and this represents a word cloud that sort of looks at the most important language that folks used. and i think it's really important that we look at this because these are all individuals who could exquisitely describe either the care giving or the care receiving processes. and you know i'm a general internist by training, i love the medical system as much as

the next guy but i offer there's little medical stuff on this slide. with all due respect to a lot of the great programs we've built, you don't see this riddled with disease management, palliative care, hospice, it kind of go backs to my earlier point which is function is incredibly important and individuals define themselves by the function they retain. if you look at the words that are up there, like community and independent, i mean that's how people think of themselves and so as we start to think about the kinds of solutions that we want, where does technology fit, why is this a technology talk, i want -- i want to leave you with a few points. i think the points really are that you have to ask, what's the problem that we're trying to solve here? so there's very little evidence -- picking up on a point -- surgical robots add much value. the reality that is surgical robots, at least at this point in the time for the data available serve a marketing problem for hospitals. it's good to say your a robot

and surgeons love them. it actually is kind of keeping your medical staff intact. that's a different problem. solving a marketing problem is way different than solving a clinical care or care coordination problem. when we start to look at population that has substantial medical problems but substantial functional limitations, thinking carefully then about the problem you're trying to solve is key and it really may be that it's more of a low tech solver. so what's the role of the telephone and the pieces of technology that do work where there is evidence? remote patient monitoring, places where a little bit of technology, a small investment can go a long way. if we're going to introduce ex-technology, what is the problem we're trying to solve with it? the second thing about technology in this environment, in the environment that diane described and i'm trying to build on, technology is not an

end-to-end solution. technology rarely solves any problems in the seriously chronically ill functionally limited person's life. it is a tactic, not a strategy. so at the end of the day, to just introduce a piece of technology is going to get you nothing but costs, and actually may be more risks than benefits. most older individuals when they get sent home from a complicated hospital stay get technology, the dme comes out and drops something off. if there isn't a substantial and robust plan, that piece of technology may bring more risk than benefit. and so i -- it kind of gets to the point that technology without a good care coordination plan is of questionable value. i think that as we build systems, and really melanie, as we think about the work that you're doing in the care coordination office, it's not just about the medicare model of care in that sort of nice model of care way we like to think about it. it is the model of care coordination and person centered care coordination that is going

to be at issue here. as you look at the states who are proposing, you know we would encourage you to look hard at not just is there a plan for the pills and the thises and thats and ins and out of the nursing homes but what is the land that supports people's goal of retaining the function that they even if they have serious illness or functional loss. my last point, picking up on one of the comments in the audience is this issue of targeting. targeting is really, really, really important. and you're not going to solve again, i think diane's slides hint at this, for the high spending medicare population, you know, medically oriented solves are going to take you a long way. and so the nice article published in health affairs that

cover the data make the observation that's a place where a medical home may make a lot of sense. you folks with lots of doctors and nurses and pharmacists and others and coordinating the medical cats is half the battle. that's a good place to start but for the medicaid population where the needs may be more functional and community based, the model of care may look very different and the medical home may not be the solution because the problem with the medical home is, you know, we're glad to talk to you in a medical context or come right in, we have the same-day appointment but for somebody's needs socially related being drawn into the medical system may not be the solution. are we trying to solve a medical problem or a functional problem? >> thanks very much, bruce. now to susan, now that we know who the chronically ill are, the needs are not all the same, and we've talked about consumer engagement or patient

engagement. how do we bring all those things together? >> thanks, susan. i figured you left because you wanted the patient perspective, which i'm happy to try to bring to this discussion. can you hear? is this on? okay. so what i want to talk about is this idea that i know ken does such a great job in all of his work talking about the need for better patient and family self management and the need for tools for that. so as we talk about who are the chronically ill, how they're spending their dollars, the technology that is certainly has to be used by the patient and family, what are the patients telling us in any model that we might develop or use? and so a couple of years ago, we at the public policy institute conducted a national survey of both patients and family caregivers, and people with multiple chronic conditions who had experienced transition.

so that's the focus of this work. we talked about what this experience was, what their concerns were, and just to cut to the chase, many of these patients and caregivers talked about poor communication. so as we're talking about technology and the use of patient self management tools, many of them didn't know that they even existed. so here's some of the data i just wanted to share with you that i see as the challenges for what at the end of the day we have to con front. which is one in four lack confidence in the health care system. they may love their doctor or their nurse practitioner, but the system is very overwhelming to them. we know from other literature that the average person on medicare has two primary care physicians and five specialists across four different practice settings. so that's a little -- a lot to take on, and to have some

confidence that this is all going to work together. 30% said when they went to visit their doctor -- usually their doctor,caregivers particularly felt that. 21% said providers do not talk to each other. and this is where it really gets to be very tricky. so we talk about adherence. how important it is that patients adhere to their medical regimen, but they get conflicting information. one in four say they get different information from two or more clinicians and feel their own health is suffering because of that. this is the one that really got me when i saw this. you know, 27% said they admitted this. this is an admission on a survey where you know usually you don't want to admit things you're doing and these folks saying they had not done something recommended by a health care professional. in other words, they were non-adherent. most of them. 32% said, they didn't agree, with what was being told.

now, we need much more work and maybe some in this room know if there's more. i want to drill down on this. but it's a serious problem. we know, for example, adherence that more than 30 years of research that i've seen on community dwelling elders and prescriptions for them, about 25% of those prescriptions are inappropriate, to begin with. and we know the polypharmacy is a huge deal. so my argument for years has been, maybe it's a good thing that many of these people are non-adherent. they may be saving their own lives. so i really think whatever we do, we've got to be talking about this in a way that makes sense to people. we also don't talk -- i didn't hear anybody talk about health literacy, for example. a few years ago that was really hot. i think we've got to come back to the hot health lit erroeracy issues. a feiser case study, i think, a woman -- chronic kacare conditi,

a woman taking care of her child who had an ear infection. kept coming back. the ear infection was getting worse and worse and worse. a liquid antibiotic she was putting in the ear instead of the mouth. she figured, ear infection, put the medication in that. we also know from the work on hot spots, for example, in camden, that there was a gentleman there many of you probably know this particular case. i think it's very telling. a person with diabetes who kept coming back into the er. a certain pattern. what's going on here. finally someone said, let me see you, give your insulin. why that wasn't done years before is beyond me. but that's the nurse in me, i suppose, what he was doing was putting the syringe -- he the bottle on the syringe and pupping up instead of flipping the bottle. in the beginning of the prescription, probably getting the insulin.

but as the insulin -- kept doing it, he was just getting air around jecti injecting air. a big revelation. now we know how to manage this gentleman's condition. this is a health care delivery, are re giving anticipatory guidance which used to be fundamental to the art and science of health care. we keep talking about the technology, but there's an art here. very deeply involved in communication. and culture. and outside of hospitals, what goes on. so we used to do anticipatory, like you're going to find this is going to happen and when this happens, this is what you should be doing. and we also used to do what was known as teach-back. so let me tell you how do it. now show me how you're going to be doing it. these are really basic interventions, and you're talking about -- basic skills

that seem to have been lost. diverse caregivers. this is not uncommon. this is a gentleman, federal worker, pretty high level federal worker for a number of years. retired. went to take his mother home. as caregiver. went to take her home from the hospital and they said you'll have to give these injections. nobody showed him how to give an injection. he thought, okay. i'm just going to go home. he started -- they, there must have been, heparin or something, right jt he goes home and starts giving this, bruising the whole body, not knowing what he's doing. and wound up taking him back to the hospital, in which case the health care team in the emergency room said what have you been doing to your father? this is the experience of family caregivers, might have been good if you showed me how to do this. so there's a lot going on, i think, with trying to get to that point where we're talking about competent, knowledgeable, skilled people who can be engaged, but they've got to

better understand what's happening to themselves so that they can do it. >> well, with that, miraculously we ended this part of the program almost exactly on time. let's take advantage of that and get started and go to our break and then come back for a vigorous discussion where we try to knit all this together and get to more discussion about actionable solutions. enjoy the coffee break. see you back near 15 minutes -- 10. okay. 10 minutes. >> and speaking of actionable facts, the restroomsen in this corner, out the hall and turn left, and, please, do get back in ten minutes to continue these conversation. first real day back for the house after the memorial day break, and we're here at the

cannon house office building in just a few minutes a house veterans affairs subcommittee will hold a hearing to look at the department of veterans affairs purchasing practices of prosthetics. according to the department's inspector general, the va's prosthetic supply costs increased by 80% over the past four years in large part due to overpurchasing, and the hearing should get underway shortly. meanwhile, on the house floor they have gavelled in this afternoon a dozen or so suspension bims. also today the house will be taking up the fda user fee bill. their version of the bill passed by the senate last week, and also today, extension of the national flood insurance program. the house is under way and you can follow that over on c-span.

again, we're waiting for the start of a veterans aface subhouse committee hearing looking at approximates for prosthetics. the inspector general report talk and the increased supply, the costs of increasing by