Measuring Quality for Person-Centered Accountable Care

12:00 – 12:10 p.m.      Welcome and Introductions

• Sarah Dash, @AllHealthPolicy, Alliance for Health Policy

12:10 – 12:45 p.m.      Presentations

• Bruce Chernof, The SCAN Foundation
• RoAnne Chaney, Michigan Disability Rights Coalition
• Erin Giovannetti, National Committee on Quality Assurance
• John Bernot, National Quality Forum
• Nelly Ganesan, Avalere Health

12:45 – 1:30 p.m.        Question and Answer Session

Twitter:
#AllHealthLive

The Alliance is grateful to The SCAN Foundation for its support of this briefing.

PLEASE NOTE: This is an unedited transcript. Please refer to the video to confirm exact quotes. SARAH DASH: Alright, good afternoon everybody. Thank you so much for joining us today. I am Sarah Dash, I’m president and CEO of the Alliance for Health Policy, and for those who may not be familiar with us, we are a non-partisan organization dedicated to advancing knowledge and understanding health policy issues. We are delighted that you are here. Hello as well to those who might not be in the room, but might be following us on Twitter at Allhealthlive. We are here today to examine quality measurement for people with complex care needs, and the important implications of quality measurement for related work on policy issues such as Medicare, Medicaid, and delivery system reform. Our goal is to better understand the essential attributes of person-centered care, and how to translate these into quality measurement and real-time practice. Before we begin, I would like to thank the SCAN Foundation for making this briefing possible, as well as to the Valerie Wilbur Health Policy Fellowship Fund for additional support. We are really lucky to have an excellent panel here with us today, and I’m going to go ahead and introduce our panelists now. All the way to my right, to your left; RoAnne Chaney is Executive Director of the Michigan Disability Rights Coalition. Her expertise is in long-term care, community and agnation and meaningful consumer involvement. The patient perspective is important to everything we do here at the Alliance, but it’s particularly critical for today’s discussion on person-centered care. So, thank you, RoAnne for being here. Next, Bruce Chernof is the President and Chief Executive Officer of the SCAN Foundation whose mission is to advance a coordinated and easily navigated system of high quality services for older adults that preserve dignity and independence. Immediately to my right, Erin Giovannetti is Senior Research Scientist at the National Committee for Quality Assurance, NCQA. Her work focuses on developing healthcare performance measures for older adults and for vulnerable populations. John Bernot is Senior Director of Quality Measurement at the National Quality Forum. Dr. Bernot is also a part time practicing family physician at Wake Forest Baptist Peace Haven Family Medicine Clinic in Winston-Salem. I almost got it out. Thank you for joining us. Finally, Nelly Ganesan, is a Senior Director at Avalere, where she advises clients on the implications of quality related healthcare policies, including public and private quality reporting programs, value based care, and payment and delivery models. We are going to go ahead and start with Bruce Chernof. BRUCE CHERNOF: Terrific. Good afternoon, everybody, it’s really a pleasure to see all of you today. For those of you who are watching on the screen, our room is full, which we just see as an incredibly positive sign about the value and importance of quality measurement. Let me just say quickly that the SCAN Foundation fundamentally believes that all older people should live with dignity, choice, and independence. All of those with functional limitations should live the same way. Our discussion today is really about, where does quality go to help measure that beyond the way we measure today? The Foundation has focused on developing what we consider a set of essential attributes for measuring quality from a person’s perspective. And that was developed through a consensus process, and I really want to acknowledge all of the folks on the screen, and their organizations who came together to wrestle with the tough issue of how do you think about quality from a person’s perspective, and how do we begin to do that in a way that can be measured? And the systems can be held accountable in the long run for the person’s perspective, not just for the technical quality of care. When we look at the essential attributes, there are really four. These are meant to really compliment the technical quality measures, which we have today, and continue to develop and refine. So, the idea that we build a plan of care that is based on people’s needs and goals, that those needs and goals are incorporated in the compassionate way into that plan of care, and that there is a cohesive and easily navigable system that actually can work with the individual, their circle of care givers, their family, to achieve that plan of care, and that ultimately, that the plan is revisited on a regular basis. It is informed by experience, and that it’s kind of a virtuous cycle. That experience drives the next generation of quality as people’s needs are addressed and met. Ultimately, this is hard. We live in an environment where funding in healthcare. Not the other way around. And so, how we measure quality and then how quality is tied to how we evaluate systems, how we set minimum bars, do you meet the requirements to be a contracted provider or to be a part of this program? And how we set maximum bars. How we acknowledge outside success. These are difficult questions. But these essential attributes and the work of the group that came together to develop them, I think, is a great foundation. I want to just thank the Alliance for Health Reform for this event, but also all of your leadership in this space. SARAH DASH: Thank you. Next, we will turn to RoAnne Chaney to talk about person-centered accountable health. Thank you, RoAnne. ROANNE CHANEY: Thank you. I wanted to start by just giving a little bit of history of what I would call a personal, planning and process. In Michigan, we established person-centered planning in our mental health code statute in the ‘80s, that applied to both people with developmental disabilities, and people with mental illness. We followed that in the early 2000s by applying and requiring person-centered planning to be used in our aging and disability waiver for home and community-based services. Most recently, Michigan has a dual demonstration under the Affordable Care Act, integrating Medicare and Medicare payment. And when we established that, advocates demanded in Michigan that that process include person-centered planning. So, the first-time person-centered planning went from not just a home and community based services process, but something that also applies in general health. There was a lot of argument about that, but it has happened, and I will tell you in a minute or so, some examples of its positive impact. There are a lot of different definitions, CMS has one, state of Michigan has one, I’m sure there are other ones out there that have been used in European countries and other states. But there are common themes that I’ve listed on this slide. And there are two that I forgot to put on there that I want to emphasize. One is the whole process; presume a person’s competence, unless there is hard evidence that competence is not there. I know all of you may be aware that people with disabilities and often aging people, are sometimes perceived to not have competence, when clearly, they are very competent. So, that is part of why that’s in our code. And the other one is that behavior issues should first be interpreted as a form of communication. Often people who are non-verbal, whether they have dementia or they have a developmental disability or a physical disability that prevents them from communicating like you and I do, verbally. Sometimes they, in order to get people’s attention, or communicate that they don’t like something, they have to use extreme means to get people to see that, and I have a lot of examples of that, that I don’t have time to present. But they exist. It’s also a process that we say, you have to look beyond purely clinical issues of your physical and mental well-being, and look at a person’s environment. So, you get to the social determinants of health, and analyzing what is going on in a person’s life. I use one example for myself, when person-centered planning was not in process, and people were not looking at me as a competent person to access my own abilities. A few years ago, I did something really stupid and fell out of my wheelchair and broke both of my legs. At the time, I was absolutely independent, lived my own life, lived by myself. Did use assistance. But breaking my legs severely impacted that ability. So, I was told by all of the clinical folks in the hospital, I needed to go to an extended care facility. I said, no, I don’t, I know how to manage. I know lots of people who do manage, I can figure this out. They did not give me credibility on that. And it wasn’t until I called a social worker colleague that I worked with at the rehab unit of that hospital I was in, and she came in and wrote in my chart that I was the Associate Director of a Center for Independent Living and I knew how to do this. Then she expressed to me in my room: I shouldn’t have to do this. And she kind of swore and said: I have a lot to do, I shouldn’t have to take my day, but I did it. And that’s when I got credibility, and I said, yeah, you are right, you shouldn’t have to do this, I shouldn’t have had to call you. But that’s how I got credibility, is because I had a relationship with a professional in the system. What about all of the other people that are not given credibility, that should be. That’s the negative. You can always see it. It is very — I will get to that part. It’s hard to measure, but you know when it’s present, when it’s not. As we’ve moved into practicing this in primary care, through the health plans and the demonstration in Michigan, one of the medical directors was telling me about a situation they had with an older woman who had inadvertently gotten her home delivered meals cancelled. It was an error. But she had called them when she had no food in her house, and they got this woman some food for the weekend, it was a Friday, of course. And he said to me: I was very concerned about this woman taking her medication, her diabetes medication, and all of these other medications she was on, at the right time and the right dosage. He said, how can she do that when she has no food in the house? How can she focus on the right medications when she has no food in the house? And I thought, oh, the medical system is getting it. They’ve got to look beyond the person’s body, and look at what’s going on in their life. So, that is very difficult to measure, and how do we do that? I have amassed a lot of anecdotes of when a person’s received person-centered services, care, whatever we want to call it. And there is a former director of our behavior health system in Michigan that says, yeah, I have a lot of anecdotes. Lots of anecdotes of this system working and this process working. He said, like you, I always get dismissed, because they are anecdotes. And he said to me, and I love this quote: How many anecdotes make data an evidence? How many do we have to have? Some people are concerned that if we establish minimum sets, you are not really getting at the process, the whole process, and doing it right and really understanding what’s going on with individuals. So, I think it is a challenge. We have been challenged by it in Michigan. There is now a person that is going devote more time to find out, how do we make sure this system is doing this? It’s important to do, but we haven’t hit on the right formula yet. Doing authentic person-centered planning — and there is an article in your packet — very important to healthcare. It’s a process that could be transformative to the person and also gives staff a really rewarding experience, when it works well. And is it cost effective? We believe it is, but we don’t have a lot of data about that. So, thank you. SARAH DASH: Thank you. RoAnne, if I could ask you a quick follow-up question before we move to Erin’s presentation. Thank you so much for your presentation. You mentioned this as part of Michigan’s code now in terms of the requirement to do person-centered planning; who is actually responsible for making sure that that happens? ROANNE CHANEY: Yeah, it’s a good question, because our state did contract exclusively with our county community mental health boards, and that responsibility was contracted to them. Now they are going to another — they’ve been moving to another managed care system, they are talking about integrating behavioral health with physical health and that’s one of the big questions, is who’s going to be responsible for this? But it’s one that advocates are united on — somebody has to be. Yeah. It’s not totally known. Right now, ultimately, it — because it’s in code, everybody is. And particularly the mental health system. AUDIENCE MEMBER: ROANNE CHANEY: I have qualified faith, yes. I have seen a good — being a person that was involved in training our new integrative care systems, I have seen at the care coordination level, which is when I think is really important, to make sure it happens. I have seen a lot of good reception to it. SARAH DASH: Thank you so much. The question of kind of, how we take what’s important to people, how we measure it, and then how we — John and Nelly are going to talk a little more about how we actually translate that into real life and what accountability for all of that really means. So, thank you for shedding light on that for us. We will get to — after the presentations — an audience Q&A. As you are thinking of questions, I will just quickly mention it now, we have green cards on the table, so feel free to jot questions down as you are thinking. Thank you. Next, we will move to Erin Giovannetti. Thanks, Erin. ERIN GIOVANNETTI: Thanks. Thank you all for inviting me to speak here, and for you guys, for attending during your lunchbreak, to listen to us talk about this. I’m going to talk about how we actually would measure whether or not that — you know, the person-centered care that RoAnne was speaking about, and the attributes that Bruce was speaking about, how do we actually “rubber hits the road” measure whether or not those are being implemented? I’m going to talk about a project where that’s been funded by the SCAN Foundation and The Hartford Foundation. In quality measurement, the way we tend to do things, is we pick a population and we measure something. We measure the same thing across an entire population. And the challenge with this, when you think about a complex population, is that you are really dealing with a very heterogeneous population. And measuring the same thing in every person may not get you to the point of measuring what matters most. So, we actually, under this grant, went out and we talked to people. We did focus groups across the country, and this is just focused on older adults that have a level of disability, but I think this could apply to any population. We asked them, what matters most to you? What do you want to get out of healthcare? Some people talked about health and quality of life goals; they talked about managing symptoms, stop falling as much, increase mobility. They talked about values that were important to them, like having privacy, choosing who cares for me in my home. They talked about care preferences. Not so much about the outcomes, but how they wanted their care to be delivered. I want to stay out of the hospital. I want to get my doctors to talk to each other. And they also talked about goals they may have for their family and friend’s caregivers that are helping them. I want to help my caregiver to be less burdened. So, when you think about all of these things, we would not want to develop one measure for each one of these things that’s up there, because we know that there are already too many measures, and that not all of these things are going to be important in front of everybody. So, how we do develop a system that actually measures these individualized outcomes? This brings us to person-driven outcomes, which is what I’m going to be talking to you about, which I feel are measuring both attribute one, and attribute two, from the essential attributes. And they are essentially individualized outcomes, identified by the patient or the caregiver as important. So, it’s what they are telling you, is what’s most important to me right now at this given time. I think a really important thing about these outcomes, is we want them to be useful not just for quality measurement. We don’t want them to be just things you are doing for quality measurement, but actually outcomes that are informative for care planning. Something that are using this information as helping you to provide better care. We developed a process for actually collecting person-driven outcomes. It starts by eliciting what’s most important to someone. So, I started off before this project, doing a lot of work, looking across different records, and all of these organizations said: We do goals. We do person-centered goals. Everybody says: We do person-centered goals. And when you look at what the actual person-centered goals are that are documented, there are good goals, and there are some bad goals. There are some organizations where goals are autogenerated from a risk assessment, and it autogenerates, well, your goal is to get your hemoglobin A1C under control. They are not actually person-centered goals. And so, we need to really understand the process to how do you get to goals that are truly what someone wants? So, we developed a goal inventory, and I’m sure this is probably too small for you to read, but using that input from the focus group, we developed these goals that is a discussion tool that you can use between an individual and the clinician that is working with them, to say, what is most important to you right now? Is it around your healthcare? Is it around your physical activity? Is it around choice and control? Is it around things in your community? Once you have a goal, we need to know, how are we going to measure whether or not you are achieving this goal? So, we did two different methods for that. The first method is called “goal attainment scaling”. This is not something new, we didn’t invent this. This has actually been used pretty extensively in rehabilitation medicine, where you lay out a goal along a scale of what you would expect your outcome is, what you want to get to. So, for this individual, the expected outcome is to resume driving in six weeks and fly to California to visit family for the holiday. That was their goal. Then you lay out what it would be like to do even better than that goal. So, what would it be like to do better than you expected? So, to resume driving in four weeks, and fly to California in time for Thanksgiving. What would it look like to be less than expected? To have complications from surgery, and to not drive for at least three months, and not make it to California for the holidays. Once you’ve laid this out along the scale, the actual process of discussing this with somebody and helping them to talk through what it means to actually meet this goal, gives you a measurable scale that you can use to look at goal achievement. This works for some people when they’ve got a very specific goal. When they know exactly what they want. Some people don’t always have a very specific goal. They have something like, I want to be in less pain. I want to feel happier. So, here is where we have another method which we call “prioritized person reported outcome measures”, just because we like to throw a lot of words into our definitions. Here, we took all of those goals that we had in our goal inventory, and we matched them to where there are existing standardized tools for measuring those outcomes. So, when you think about the goals around depression, anxiety, sleep, pain, there are standardized tools for measuring those things. We put them in a bank. Now, if we were to ask somebody all of these questions, you have about a 300-item survey that no one is going to fill out. So, instead of asking a 300-item survey, we say, well, why don’t you just match the PROM, or the personal reported outcome measure, with the individual? So, here, you have two individuals: Mr. T, his goal is he’s just got too many medications, he can’t keep track of them all. Everything is just really difficult. He wants — he’s going to use a healthcare task difficulty scale, that’s going to measure how much difficulty is he having with his healthcare tasks, and he wants that to decrease. Mrs. S, what she really wants is she really wants to be able to get more of the services and supports in her community. She needs to get connected to community resources. We are going to use and access to services and supports scale for her. Now, each individual has a different scale that they are using, a different questionnaire. But at the population level, we can know whether or not the population is achieving their goals of either improvement or maintain on that particular person reported outcome measure. I know this sounds really complicated, like, how would you actually get clinicians to do this? Which is the first thing I thought when we were coming up with this. Like, this is all great in theory, but come on, we’ve got a five-minute doctor’s visit, no way this is going to fit in. So, we did this in seven different organizations and we got them to implement this, and this is some of what we actually came out of the data: So, these are the types of outcomes that we saw. When they actually sat down with someone and prioritized, what is the thing you want to work on most in the next three months, we see these outcomes that are all over the place, from healthcare utilization to physical, psycho-social, independence, travel and vacation, caregiver goals. They are really all over the place. In the 186 patients we had in this, we actually followed — well, how many achieved their goal? So, the first thing we wanted to know was, how are you actually doing on following up on the goal? What we saw was that across both the methods, the goals attainment scale, the PROM, that 87% of people had a follow-up on their goal, which is actually really good in terms of engagement. About 60% achieved the goal. Here is just a quotation from one of our participants: “You know, you can tell somebody what to do, but I think you convey better things when you give people options to do it, find out what they like.” One thing I will note about this, is that 60% of people met their goal, but when we talk to people who didn’t meet their goal, they weren’t dissatisfied with their care. In fact, when they talked about this, they felt that not meeting their goal was actually really informative to them, about what they could do to help meet their goal in the future. So, this process is really the thing that engaged people in their care. I will just close with a couple different quotations from the people that we’ve engaged with this. One from a pilot participant: “I found in doing some of these things that we put down, there is a strength in me. People were far more engaged in their care when they were doing this.” Then from one of our nurse case managers: “All of a sudden, they were totally engaged in healthcare and that was new for a lot of them.” I thought that was really cool. SARAH DASH: Thank you so much, Erin, and this brings to mind a little bit of a follow-up question. We hear a lot about patient engagement and patient satisfaction. Interestingly, it sounds like from what you are saying, when you engage the patient, the people more in their care, they are far more satisfied with their care. Is that fair to say? ERIN GIOVANNETTI: Definitely. I think that for a lot of these people, engaging them in these very specific, detailed conversations about their goals, did engage them more in their healthcare and made them more satisfied with the care that they were getting from their care manager. SARAH DASH: If I could ask one other clarifying question, you mentioned the seven organizations: Can you say something about the types of organizations that you worked with? ERIN GIOVANNETTI: So, we had three health plan complex case management programs, two home-based primary care programs, one patient-centered medical home — have I gotten to seven yet? There was another complex care management program in there. SARAH DASH: Great. We will now turn to Dr. John Bernot from the National Quality Forum. JOHN BERNOT: Well, good afternoon everyone and thanks again for having me. I really want to thank both the Alliance and the SCAN Foundation. We’ve had the privilege to work with the SCAN Foundation and some of what I’m going to talk to you about is taking those ideas and work that we’ve done. I’m going to start with: How do you build measures or set a foundation to build measures around the patient voice? So, a lot of what Erin has already said, it’s going to converge into the same themes that we have, but we are really trying to set a platform that is something that we can use to help facilitate measurement in this field. I will start just with our very generic — this goes along with Erin’s, but for us, a patient reported outcome is when a patient gives some report of their health status to us that is not interpreted by a physician or anyone else. So, they are actually telling us something about their health status. That information, and we heard a little bit about anecdotes, it gives us the ability to start taking these anecdotes and making these responses into data points. So, we begin to move into the measurement field in a very systematic way there. And then the measures, they are just quantifications of these responses. One of the ways that we’ve been trying to facilitate that is, we have a group called the NQF measure incubator. And what we are doing in there, is we conduct strategy sessions and look for meaningful ways to bring the patient voice out in the field of measurement. We try to do this very early on, before the measures are already baked, so that we have the right people around the table. These are multi-stakeholder, multiple perspectives — patients, hospitals, clinicians, that are sitting around and getting input onto these measures before they are made, so that they can come out with the best — the best success at the end. We’ve done this over some really prolific topics. Chronic obstructive pulmonary disease, which you know as COPD. Rheumatoid arthritis. Multiple scleroses. I would suspect, if you took a moment, you know a family member or a friend that has one of these. These are chronic diseases. They are real, and they affect lives for not just a day or two, but for years and year and years. So, the goal of what we are looking for, is to facilitate, how do we measure this, and how do we get to the point where we incorporate the patient’s voice? The patient wants to live the life the patient wants to live, and that’s extremely important to us. And we want to make sure that’s being heard. In fact, as a clinician, it’s almost — it takes me back a little bit that some of the things that we do sometimes actually impedes the livelihood of a patient, because we are following the care plan and not listening to what the patient’s priorities are. So, these measures help us get to that point. I will give you an example of this in action: We did a recent project with the Robert Wood Johnson Foundation, and patients like me, where we got very, very early input from patients as to what was important to them, when they are being treated by their physicians. Unlike what we are always taught in medical school, and what we are currently measuring, which is what’s the longevity, how do I prolong life, or even to manage pain. That was not it. It was, can you help me with my fatigue? I want to do my daily life. I want to be involved in the community and you need to help find a way to track that. Simply put, the patients are sick and tired of being tired, and that’s what we need to focus on as physicians. I definitely take this to heart to try to make sure we are incorporating this. Are we doing anything that is going to take them away from their goals here? This really sets up well for a place where we can get patient reported outcomes and get patients involved in the quality of their care. That’s on the measurement side of what we’ve done there. Beyond measurement, we do work with our members. We are a membership organization, we have a lot of different members across the healthcare spectrum, and they help us out by coming to the table for these things and one of the things we’ve had them do is actually sit down and help us make practical actionable guides — playbooks for clinicians or for healthcare organizations. One such thing is, we have an action brief on shared decision making. In this brief, it actually gives guidance to a clinician as to, how do you facilitate those conversations? These are not easy, and if you’ve been part of that, which I suspect you have, you know these are sensitive discussions already around the patients’ livelihood. Trying to preserve the dignity and trying to remain patient centered can be difficult, especially the ways some of us have been trained historically. So, it gives us a chance to reflect, it gives us some guidelines, some discussion points. It helps us frame our encounters with our patients and making sure, again, what that patient wants is at the center, and that we are very careful to make sure that our clinical decisions don’t affect their livelihood in a negative way. The action brief, which is actually included in your packet, in the full length — if you look, it relates right back to these measures that we talked about with the work with the Robert Wood Johnson Foundation. Those things that we are learning from the patients, are the things that we are trying to work into a guide and work into this combination of both measurement and guidance here. So, I’m trying to be sensitive to time, but in closing, I do want to say, there are a lot of great projects in this area. And as you hear, we are all working towards really, really the right goals. It’s an immature field that is growing right now, and that is why we are all here today. But I mean, I really believe, collectively, as a community, this work is what’s going to ensure that the patient’s voice is heard and incorporated into these decisions. So, thank you. SARAH DASH: Thank you, John. If I could just ask: It seems like really trying to incorporate the person’s voice into the — what is measured in terms of quality, it really seems to represent kind of a C change in how we think about what quality of care really is. I wonder if you could comment on that. Also, as a practicing physician, if you could talk about how does that change, or how might it change the way that health care is practiced? We hear a lot about the concerns about too much quality measurement, too much burden. Can you speak to that a little bit in terms of what this change might mean for daily clinical practice? JOHN BERNOT: Absolutely. And I will start by saying, I completely acknowledge, and your question is spot on. I mentioned we are immature in this field, and by immature, I mean that we are really good at measuring processes and things that are done, that technical medicine, we are good at. But trying to incorporate this, is something that we are still not there yet, and I do think we are in a learning phase of how to incorporate this, and on the provider side of this, it’s going to be difficult for some individuals, I believe, until this begins to fit within the care we deliver. For example, if it becomes yet another thing, another box to check while still being — checking the boxes for the technical medicine, this could be something that could add burden. So, I think the best way is going to be whenever we can incorporate this into the way that we assess clinicians, both in terms of their performance and potentially even so far, at some point, into the way that performance-based payment models are done. I don’t think we are quite ready, but I think if we can integrate it into our daily work flow, it will be the best chance of us getting success on the front lines. SARAH DASH: Thank you so much. We will now move on to the final presentation for this panel. We hear a lot about, not only quality of care, but also value based care and the move from volume to value, or from fee-for-service to value-based care. It’s become sort of a mantra. But her