2

Proceedings
Day 1

February 25, 2013

WELCOME, INTRODUCTIONS, AND OVERVIEW

Welcome from the Institute of Medicine

Dr. J. Michael McGinnis

DR. MCGINNIS: Good afternoon. I’m Michael McGinnis, from the Institute of Medicine (IOM), and it’s my pleasure and privilege to welcome all of you to the IOM and to our wonderfully restored historic National Academy of Sciences building.

This year is our sesquicentennial year. Because we were oversubscribed, some of you are watching via video feed in the Board Room. You will be viewing under the watchful eyes of President Lincoln, who was captured in a striking portrait with the assembled scientific community of 1863, the year that Congress passed and President Lincoln signed the Charter for the National Academies. The year 1863 tells us that the National Academy of Sciences was founded during a war that led to fundamental progress in extending and deepening the democratization of our political and social processes across the citizenry. In many ways, it is entirely fitting then that we’re having our conversation on patient partnering here today in the National Academy of Sciences building. Without overplaying the comparison, it seems appropriate to point out that this workshop, Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement, is aimed at a further expansion of citizen empowerment, dedicated as it is to the democratization and deepening of the direct engagement of each individual, as participant and advocate, in the effectiveness and the efficiency of their health care, as well as in the capture of each care experience to improve the knowledge base that is the bedrock for medicine’s progress.

Before we move into the day’s proceedings, in addition to thanking each of you here today as presenters and participants, I would like to acknowledge and thank, in particular, three groups especially central to making our meeting possible. First, the Gordon and Betty Moore Foundation and the Blue Shield of California Foundation, for their generous support in sponsoring and leading the discussions up to the meeting. With us today are George Bo-Linn and Dominick Frosch from the Moore Foundation, and Richard Thomason from the Blue Shield of California Foundation. Thanks both to your foundations and to your colleagues for the support.



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2 Proceedings Day 1 February 25, 2013 WELCOME, INTRODUCTIONS, AND OVERVIEW Welcome from the Institute of Medicine Dr. J. Michael McGinnis DR. MCGINNIS: Good afternoon. I’m Michael McGinnis, from the Institute of Medicine (IOM), and it’s my pleasure and privilege to welcome all of you to the IOM and to our wonderfully restored historic National Academy of Sciences building. This year is our sesquicentennial year. Because we were oversubscribed, some of you are watching via video feed in the Board Room. You will be viewing under the watchful eyes of President Lincoln, who was captured in a striking portrait with the assembled scientific community of 1863, the year that Congress passed and President Lincoln signed the Charter for the National Academies. The year 1863 tells us that the National Academy of Sciences was founded during a war that led to fundamental progress in extending and deepening the democratization of our political and social processes across the citizenry. In many ways, it is entirely fitting then that we’re having our conversation on patient partnering here today in the National Academy of Sciences building. Without overplaying the comparison, it seems appropriate to point out that this workshop, Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement, is aimed at a further expansion of citizen empowerment, dedicated as it is to the democratization and deepening of the direct engagement of each individual, as participant and advocate, in the effectiveness and the efficiency of their health care, as well as in the capture of each care experience to improve the knowledge base that is the bedrock for medicine’s progress. Before we move into the day’s proceedings, in addition to thanking each of you here today as presenters and participants, I would like to acknowledge and thank, in particular, three groups especially central to making our meeting possible. First, the Gordon and Betty Moore Foundation and the Blue Shield of California Foundation, for their generous support in sponsoring and leading the discussions up to the meeting. With us today are George Bo-Linn and Dominick Frosch from the Moore Foundation, and Richard Thomason from the Blue Shield of California Foundation. Thanks both to your foundations and to your colleagues for the support. 3

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Second, thanks to the Planning Committee and its Chair, Christine Bechtel. This workshop is being hosted by the IOM Roundtable on Value & Science-Driven Health Care in accordance with the National Academies’ rules and procedures. An independent Planning Committee, whose roster is in your folders, has organized the workshop with the support of the IOM staff, and they clearly have done a superb job; when you look at the list of Planning Committee members, you’ll know why this meeting turned out so well. This brings me to the third group: the IOM staff. In particular, I would like to thank Leigh Stuckhardt, who has moved on to the Centers for Medicare & Medicaid Services; Julia Sanders, with the guiding hand of Dr. Claudia Grossmann, our Senior Program Officer coordinating the work; and Valerie Rohrbach, Barret Zimmermann, and Liz Johnston, who are here to facilitate the sessions. Please join me in thanking the Foundations, the Planning Committee, and the IOM staff for their work. I would like to flag several additional items before I turn to stage-setting comments from Dominick, on behalf of the Moore Foundation, and from Christine, on behalf of the Planning Committee. First, each of you has received the briefing materials that were assembled by the IOM staff with recommendations from the Planning Committee. You also have received a folder that contains the agenda, participant list, one-page overview of the Roundtable’s work, and background material from the recent and important Health Affairs special issue on the topic of patient engagement, including both a table of contents from that issue and one key article. In addition to these materials, you will find a one-page summary that provides an overview of the strategy map for the work of the Roundtable. In particular, I draw your attention to this document because it includes a list of the ongoing projects that are under way in the various Collaboratives of the Roundtable, which underscores the essence of this meeting’s focus on action. What we want, in effect, is to emerge from the series of conversations with an action agenda that will allow us to be more focused as we work collaboratively across our various organizations to foster progress. The Roundtable’s projects fall into three categories: value and improving the science of transparency; science and knowledge generation as real-time processes; and culture—strong public and patient engagement. The patient as a vital leader for each of these three aims—value, science, and decision making—and the focus on patients during this workshop are obviously clear. The conference sets the stage for success across all three domains, and we’re very hopeful about the outcomes of the discussions in providing guidance for the work ahead. Finally, when it comes to action, I would like to acknowledge those of you in the room who are participants in the session and who bring to this conversation the kind of commitment that is so important to the progress ahead. The Planning Committee has worked very hard to ensure that this is truly a patient-centered set of discussions. Of course, each of us at one time or another has been or will be a patient and witness, and thus brings occasionally painful perspectives to these sorts of discussions. In addition to the primary cadre of attendees from the patient community, some of the agenda sessions are organized with patients as co-presenters, in order to ensure that the perspectives at every level are truly representative of the issues at hand. We also have here in the room individuals who have built, and are building, important organizational capacities to lead change and help foster follow-up to our discussions. Examples include Michael Barry, President of the Informed Medical Decisions Foundation; David Blumenthal, President of The Commonwealth Fund; Bob Kaplan, Director of the National Institutes of Health’s Office of Behavioral and Social Sciences Research; Lygeia Ricciardi, Head of Consumer Health at the Office of the 4

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National Coordinator; John Santa, of Consumer Reports; Sue Sheridan, Deputy Director of Patient Engagement at the Patient-Centered Outcomes Research Institute; and Daniel Wolfson, Chief Operating Officer at the ABIM Foundation. We could go down each and every row and it would become clearly evident to us, as if isn’t already, that this room contains the kind of leadership that can really make a difference moving forward. Please take advantage of our time together to link deeply with each other on behalf of our mutual commitments to progress. Now, it is my privilege to turn the meeting over to those who will frame the sessions. First, Dominick Frosch will speak on behalf of the sponsors to put the meeting in the context of the Moore Foundation’s plans for leadership in this arena. Following his comments, Planning Committee Chair Christine Bechtel will lead us into the agenda. Thank you all very much. Opening Remarks and Meeting Overview Dr. Dominick Frosch DR. FROSCH: Thank you very much, Michael, and good afternoon everyone. I am delighted to be here today and to welcome such a large group for discussion on this very important topic: meaningfully engaging patients and families in their health care. On behalf of the Gordon and Betty Moore Foundation, I want to express my sincere thanks to Michael McGinnis and the tireless staff at the Institute of Medicine for all of their hard work in developing this terrific agenda that we have here. And I especially want to thank Christine Bechtel and members of the Planning Committee for all of their work. Finally, I extend my appreciation to today’s presenters for sharing your work with us here. Now, before we delve into the specifics of how we advance the engagement of patients and families in creating a health care system that produces better outcomes and better value, I would like to spend just a few moments sharing a personal story with you. And I would like to think that this story captures some of the spirit of why we’re all here and working so hard to transform health care. Some of you know me as a researcher, and I have been interested in shared decision making for over a decade. In recent years, I have concentrated my work on trying to implement shared decision making in routine care. Later today, Grace Lin will present work that she and I led together. But there’s also a very personal side to this research and it’s a large part of why I was drawn to this issue in the first place. Just before I turned 17, I was diagnosed with type 1 diabetes; it was a diagnosis that was life changing. I was fortunate enough to be diagnosed in a hospital where, after I was stabilized on an insulin regimen, I went through a training program that lasted 5 full days and taught me everything that I needed to know to be able to manage the condition, to understand what it did and what I needed to do every day to be able to avoid the complications that can result from diabetes. Now I wasn’t a model patient right away, and it took me about 6 years until I woke up one day and fully realized that all of my care was really in my hands, and that my ability to avoid the complications that can result from diabetes depended on what I did every day. So I test my blood sugar an average of eight times a day and I always know the trajectory of that blood sugar and where it’s going. In the language of medicine, I practice tight control and I’ve been doing that for almost 20 years. 5

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The benefit of all this is that, so far, I have been able to avoid complications, and every year I go to see an ophthalmologist for an annual exam to determine whether or not I have any traces of retinopathy. Every year as that appointment approaches, I’m a little bit nervous because I expect that maybe this will be the year when the first shoe drops and there are some initial traces of retinopathy that indicate that something may need to be done. And 3 years ago when I went for this exam, the physician made a very interesting statement. First she spent a few silent minutes conducting the exam and then she stopped and said, “Everything looks clear, no trace of retinopathy,” and I said, “Whew, okay. What I’m doing is still working.” But then she said this: “You must be really good at following orders.” And I was taken aback a bit. Her remark was in my view really both inaccurate and inappropriate. Inaccurate because I don’t do the things to manage my condition because somebody else tells me to do them; I do them for me. And it was inappropriate because imagine if she had said this to someone who didn’t know as much about managing the condition, or didn’t feel as confident about managing it as I did. As a psychologist, I can say that hers was a comment that undermines patients’ sense of what they can do and what they need to do to stay healthy. And it really sort of gets in the way of meaningfully engaging patients in their own care. I tell you this story because I think it illustrates what we mean by changing the paradigm of health care delivery. The place where we want to get is one where the patient is a true partner with health care professionals. In fact, the most important team member, not someone who simply follows and obeys orders. Most patients don’t want to follow orders any more than doctors do, and we need to change the culture of health care and put the tools in place to make engaging patients the way we all work because it’s the right and the respectful thing to do. It was this vision of a health care system in which patients and families are truly at the center that drew me to the Gordon and Betty Moore Foundation. Our goal in the Foundation’s new Patient Care Program is bold. We want to eliminate all preventable harm and eliminate unnecessary costs, and we include among preventable harms the loss of dignity and respect that many patients experience when they encounter the health care delivery system. We see a clear path to how this goal can be achieved. We need to meaningful engage patients and families in a redesigned system that is supportive of patients and families: a system that optimally integrates medical and information technology, interdisciplinary teams, evidence-based practices, and continual learning; a system that considers patients and families as integral partners and embraces their engagement in all aspects of health care. We know that this goal is extraordinarily ambitious, but we all know that for patients, families and ourselves, it is the right thing to do and we must strive for nothing less. We hope that you will join us in achieving this goal. I look forward to an important and engaging discussion over the next 2 days. Again, thank you all for joining us, and now let’s get to work with advancing patient and family engagement. Thank you. Ms. Christine Bechtel (Moderator) MS. BECHTEL: Thanks, Dominick, and let me start by thanking the Planning Committee and to the IOM staff in particular, who really did the hard work of putting this great workshop together. We are going to spend the next day and a half diving in to some of today’s most critical issues in health care with experts in the field that are well known for their innovation and dedication to patient and family engagement. We would like for this to be very, very interactive. 6

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We will focus on this idea of patient, family, and citizen engagement in the three areas that Michael outlined so eloquently—shared decision making, knowledge generation for research to improve population health, and changing our expectations for value in health care. And we’ll examine the question of how we can engage patients, families, and citizens in each. That begs the question, what is “patient and family engagement”? For most people the meaning of the phrase is kind of like a Rorschach test—it means different things to different people. I think we can do better. In fact, the Health Affairs article that you have in your packet begins to really dive into a more multifaceted definition of engagement, focused on engaging patients and families at three levels. The first, and the most often thought of, is of course engagement in their own care; we know a fair amount about that and we’re going to continue to talk about engagement in care and find even more effective ways to do so. The second is engagement in organizational or institutional design and governance. So this could be, for example, how an institution might collaborate with a group of patients and families to design a shared decision making program to figure out how the institution can build it into the workflow, not just of their clinicians, but also of their patients and families. In other words, patients and families themselves are really part of designing the process. We’ve seen this strategy work successfully and have a great impact in a number of areas, whether it’s designing a patient- centered medical home or having individual hospitals embed patients and families on safety committees, et cetera. Then the third level is policy making: engaging patients and families and their representatives in policy making. That might be at the national, state or the local level. We have some great examples of that today in the Health Information Technology Policy Committee, and other esteemed policy making bodies where patients, families and their representatives sit alongside clinicians and employers and health plans and researchers to shape public policy. PCORI is another good example of that as well. So our goal is that, together with our terrific speakers, with the audience, with the Planning Committee panel, we can use this day and a half to start to outline a concrete and actionable pathway toward how we really accelerate progress in patient and family engagement in those three areas that I’ve outlined. The output of the day and a half will be a report of what we find and discuss, so that means that audience participation and interaction are really critical. We want to make sure that the audience has a chance to get up and not just ask questions, but also give your viewpoints and your comments. We also have hundreds of individuals joining us online, and there is a way for you online to send in your questions, so we really encourage that as well. Right now we’re going to start in exactly the right place, in my opinion, and that is with a voice for patients and family caregivers: Dr. Jonathan Welch. He has experiences as a family caregiver, but also as a physician, and he brings a very unique perspective to this discussion that we thought was essential to lead off with. He’s an instructor in medicine at Harvard Medical School and a practicing emergency physician at Brigham and Woman’s Hospital in Boston, and his work focuses on patient and family-centered care. He also serves on his department’s Patient and Family Advisory Council. Some of you may have seen his writing. It has been featured in Health Affairs, Roll Call, the Washington Post, and also the Chicago Tribune. So please join me in welcoming Dr. Welch. 7

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LUNCH KEYNOTE To Improve, Health Care Must Partner with Patients and Families Dr. Jonathan Welch DR. WELCH: Thank you. I’d like to begin by sharing a story about my family’s journey through the health care system and what that really taught us about the importance of patient- and family-centered care. It started about 2 years ago on a sunny September morning, on a Monday morning, when I got this call that all of you, all of us, would dread. That somebody who we care about, who we love, was in real trouble and that catastrophe could be around the corner. And on the line was an emergency physician from my Wisconsin hometown and he told me that my mother was sick. My mom, who was a retired high school teacher, she taught pregnant teen mothers and tried to get their lives back on track, had been undergoing chemotherapy treatment for breast cancer and we were really grateful. The chemotherapy had kept her cancer at bay. And we really were just taking every day and being grateful for it. But on that day she suddenly changed. My father had found my mother very somnolent at home and he called 911. And when my mother arrived at the emergency department her heart was racing, she had a high fever, and her infection-fighting cells were very low. Now, as an emergency physician, I knew exactly what was going on. This is something that I treat in my own practice. It’s called neutropenic sepsis, and for our non-clinicians in the room this just essentially means that an individual’s infection fighting cells are low, and at the same time there’s a systemic infection. Now there was some good news and some bad news. The bad news was that this is a life- threatening diagnosis. The good news was that there has really been a transformation over the last decade or so where the treatment of systemic infection has really been revolutionized. We now know more than 15 years ago exactly what patients with systemic infection need. Oftentimes, there are now protocols in hospitals that dictate what happens to patients with this condition. What this means is that individuals oftentimes are getting antibiotics. They are getting IV fluids and if they are particularly sick, they are getting care in an ICU center where they can get even more intensive therapies. But these studies told me something else. They told me that we were on the clock. These studies have shown that timely care of sepsis really is of the essence. It can be the difference between life and death. And so after hearing this troubling phone call, I moved quickly from Boston to the Wisconsin Hospital where my mother was. Sequestered on that flight, really out of touch with what was going on, and knowing though that those hours really were of the essence. When I arrived in Wisconsin, I went directly to my mother’s hospital bed and you can imagine, it’s about 9:00, 12 hours after my mother initially went into this emergency department. She is now on a hospital floor and it’s a quiet city community hospital. The lights are on. She looks pale. She looks weak and it’s quiet. Her doctors have gone home for the day. It’s me, my family, and her nurse. Now I remember talking to her, and she was very stoic, and I remember her telling me she felt fair, as if this life-threatening infection were just a little bit of a bump in the road. And one of the things I was very eager to determine early on, just a quick look, was what her blood pressure was like. This is a poor man’s way of essentially figuring out how people are responding to systemic infection treatments. So I went to the nurse’s log and looked in her book and I saw this terrifying picture with her blood pressures crashing through the day. Her blood pressure is now 8

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half the values of what they were when she arrived in the emergency department 12 hours earlier. And I thought, “What’s going on?” I have to admit I was a little surprised that she was on a normal hospital floor, and that she wasn’t in an intensive care unit already. So I did a little bit of extra detective work and very quickly I realized that these to me very familiar systemic infection treatments still hadn’t been delivered. So the clock is ticking, it is 10:00 p.m., 13 hours after my mother initially arrived at the hospital and I’m thinking about how I’m going to be the best advocate for my mother that I possibly can. I have to ask that the nurse call my mother’s oncologist and that we request a transfer to the intensive care unit and I’m hopeful, after the oncologist did indeed approve this, that we are going to turn the corner. I just hoped it wasn’t too late. So I sent my family home. I stayed with my mother and we got transferred to an intensive care unit. It was about midnight, 15 hours on. Over the next hour, it became clear that things still weren’t changing and many of these critical interventions weren’t being implemented. And so I got confused. I was scared. I was tired. I was exhausted. And at one point my mother’s nurse came into the room and she said something to me that I think was a veiled criticism of my mother’s physician but at the time, to be honest with you, I was trying to get my bearings in a new hospital. I was tired and I just was very nervous about what was happening. I said, “Well, why haven’t these treatments been delivered?” And she said, “Well, we do have a treatment protocol for this condition, for systemic infection, but your mother’s oncologist hasn’t ordered it.” This surprised me for a number of reasons. The first being that usually, in my experience, by the time somebody gets to an intensive care unit and is very sick, you have an intensive care doctor taking care of the patient. Secondly, I just still couldn’t understand why these treatments hadn’t been started. I felt a little bit like I was in the Twilight Zone where realties had been flipped upside down and I couldn’t quite get my bearings. Over the coming hours, I really was, I was torn and I was scared. On one hand, I wondered, what is it going to be like if I advocate for my mother again; am I the pushy family member? And I knew all too well about that dynamic and how that dynamic could play out in the clinical care setting. What would happen if my mom survived this situation, and she needed to restart chemotherapy, and now I’ve criticized her oncologist? What is it like if you’re too demanding and your ICU nurse starts avoiding your mother’s room? I was psychologically becoming off-balance, and my confidence as a doctor was eroding as I was both trying to marshal resources in the wee hours of an intensive care unit, and at the same time really becoming a caregiver for my own mother. I remember her calling me to the bedside every 15 minutes. She was very uncomfortable in her ICU bed. The lights are on and blazing. You can hear the suction, the white noise of the suction machine in the background, [and her] saying, “I’m really uncomfortable, you have to let me get up,” and me always having to tell her, “We can’t do that, we need to keep you here,” and me kind of on my own trying to reposition her in her bed with the nurse outside the room, who I thought was probably doing more important work at the time. Ultimately, through the night, we were able to eventually get my mom the care that she needed, and it ended up taking a request from me that we transfer outside of this hospital to another facility. And we didn’t need to transfer her, but it did compel her oncologist to transfer care to a capable intensive care doctor later that morning. By the time that happened, it was about 8:00 on Tuesday morning, so 23 hours after the initial presentation to the emergency 9

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department. And I remember my mom telling me, “This is really, really tough. This is difficult but I want you to push me. I want to live. I want to make it through this.” She did push over the coming days in the hands of this capable intensive care doctor. She did get the treatments that she needed for systemic infection. But that literature that told us that time is of the essence held true for her as well. And over the coming days, she got sicker. And I remember toward the end, when she was mostly sleeping all the time. She was not awake. And there was this one moment when she just briefly opened her eyes and she just whispered to me, very weakly, she said, “I never got to say goodbye.” And she was dead by the end of the week. Now I have to ask you, after experiencing a loss like that, this sense of wasted opportunity, what would you do? For us, it seemed like, in our minds, that mainly we had two options, both very blunt instruments, but the only tools that were available to us as family members and as a patient. And that was that we could either sue the hospital, or we could write a letter. And we didn’t want to sue. I really feel like that was something that was too destructive. I’m in a high- risk field myself. I’ve never gone through that process, but I worry about it. We really just wanted to make sure that future patients who came through that hospital door never had the same experience that my mother had, that there was never that lost opportunity. So we constructively put together a letter, and in it we really referred to these national treatment protocols and pointed to specific elements of my mother’s care where this hospital fell short and offered suggestions for improvement. Now, I have to admit, I felt like I was well positioned to make a change in this hospital. After all, I was a physician who treated this exact complaint and condition in my own practice. I could speak in the technical language that the hospital administrators and the physicians could understand. And I felt like I had insider information here. I had almost a view that even some patients perhaps may not have had, and that was going to set us up for having a good opportunity to improve care. And initially after we sent the letter, holding our breath, there were some hopeful signs. Within a week, the head of the emergency department had called and left me a voice mail saying, “Look, we got your letter. We wanted to let you know that we’ve heard you. We’re going to review the case. Call me if you have any questions at all.” So I did, reaching the physician’s voice mail, and I waited for a response. And I continued to wait. And slowly but surely, weeks passed, months passed. I was initially thinking, “Man, give them time, be patient, don’t be the pushy family member. Let them do their due diligence and review the case.” But as time went on, and 4 months ultimately went on with absolutely no reply, I felt like they must have tossed this case to the side. That this was either going through a medical legal process or they just weren’t going to respond to me. So 4 months later I called back. And this time my call was returned by a head administrator in the hospital, an intensive care physician himself. And we had a phone call with my wife and me, both physicians, and he said, “We reviewed the case and clearly there wasn’t the degree of urgency that was really required to treat her.” So we kind of hung on to that sanitized admission of error but an admission nonetheless. Then we really focused on what could change within this hospital based on some of our suggestions in my mother’s case. And some things did change; a small number of things did change. For example, protocols for systemic infection were being implemented in the coming months in the emergency department where my mother received care. Other suggestions and other problems kind of were left hanging. To this hospital we had recommended that they consider a rapid response team. I know many of you probably know what these are, but for those who don’t, these are teams that are called when patients on hospital floors are quickly decompensating, and we’re trying to get a rapid assessment and rapid action to hedge off the 10

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kind of impending disaster. So, physicians and administrators come to the bedside and rapidly assess the patient. It turned out that they had one of these systems within my mother’s hospital, it just wasn’t called. And my sense is that probably this was done, or not done, because the nurse and perhaps even the oncologist didn’t know about how to recognize the systemic infection condition. Then still other things nothing really happened at all. There was really no system for identifying when a hospital was not enacting protocols for conditions like systemic infection. There was no warning system for that. And additionally, I think one of the biggest things that hit us toward the end of my mother’s care was the lack of an intensive care physician coming in to her care. We had said it might be a good idea, especially for a subset of these patients, if intensive care doctors are brought in immediately when patients come to ICUs, and this physician said, “Look, we’ve tried that, but politically it’s just been impossible to do.” So, concluding the call, there was this one other burning question still kind of in my gut. And that was: why 4 months? What took so long? And the physician just said, “We were really trying to get improvements in care before we called you back and I’m sorry about that.” That was the only apology that we ever heard from the hospital, and that concluded our entire communication with the hospital. Now, by a show of hands, I’d like to see how many of you personally, or maybe in the care of a loved one, have had a health care experience, whether it’s kind of a small bad outcome or a major bad outcome? So if you turn around and look, I mean this is a majority of people who have hands who are in the room. Now what I would ask you to do is, of those of you who raised your hands, how many of you felt that the health care system, the hospital, or the clinic where you were cared for made a change as a result of your experience? So, look at that missed opportunity there. Now I’ll just say that this is not an uncommon experience, what we’re seeing here in this room. I’ve had clinicians, nurses in my own practice, readers who’ve read what I’ve written, come to me and say that they’ve had very similar experiences. This experience is exceedingly common. So what’s the way forward for health care? I think there are a couple of things that we can do. The first really goes without saying: that patients and families need to play an active role in the care that they receive. And for us, this was really exemplified by the anguished 4 months of waiting as we were listening and hoping for a hospital response. That time emphasized to us how unimportant we were in the care improvement process. I think if you think about health care as any other service, when you compare it to other service sectors, other industries that make products, and you look at how those industries use user input, or customer input, to design their products and transform their care, health care really underutilizes that voice. It’s not partnering with patients and families in a way that transforms the care that we deliver. And I think that has a real impact on the quality and the costs of the care that we provide. But I think there’s a way forward that has been outlined already, but I’ll just say a few things from a clinician’s perspective. Where do we go from here? I think there are two things that we can do. The first is that we need to find new ways of listening to patients and families. Hear their experiences, understand their frustrations in the continuity of care and know what their preferences are. The second is that we need to even more actively engage with patients to transform the care that they receive. And I think this can play out at the individual clinical level, at the health care administrative level, and then as I know we’ll talk about later in the conference, at the knowledge generation level, and even as consumers in the marketplace and having transparency in quality and cost data. 11

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I’ll share a few examples here of things that I’ve seen after I’ve had this experience. On the clinical level, there’s a program called Condition H at the University of Pittsburgh. This is a program where the hospital has had a rapid response team, one of these teams that bring clinicians to the bedside of a decompensating patient. But they’ve actually now allowed family members to kind of pull the emergency lever and enact that system. And I think if we had had that in my mother’s hospital that could have been one way that there would have been a difference in her outcome, I can’t say for certain. But it certainly would have been beneficial to us. But I would emphasize that you don’t need to be a doctor tracking care and knowing the intricacies of clinical care in order to play a role here that’s valuable to the health care system. Especially in our era of contracting residency hours, increasing salaried physicians and individuals of my generation, who are prioritizing quality of life more than in the past. As we transition more to shift-based care within health care, there are going to be times where the family member is the only individual who knows what that patient looked like 12 hours ago on that hospital floor. So those family members really provide us with incredibly important information, and in the era of team-based care, we need to have patients and families included. I think another example would be sharing medical notes. So clinicians’ medical notes traditionally have not been available to patients, and now through electronic medical records, we’re seeing that patients can get access to their notes. And there was an Annals of Internal Medicine piece within the last 6 months that looked at patients who had access to their notes; 75 or so percent of them said that they felt more in control of their care, and between two-thirds and three-quarters said that they were adhering to their medications more faithfully. So here’s another example, especially when you look at the Health Affairs work that’s been going on in the last couple of months and with their current issue, when you think about the activated patient, when you think about enhancing patient engagement, here’s one of the mechanisms by which this actually happens. One final clinical level innovation that I think provides us with some hope, one that I’ve seen that I think is a really innovative and interesting way for moving forward, is Anthony Digioia’s in Pennsylvania. He’s a hip and knee orthopedic surgeon. And so he’s basically said this, in the era of ACOs and care redesign and transformation to taking care of patients and including patients in team-based care, we really need to design this system from the inside out again and start with the patient’s perspective. So what he’s done, with patient consent, he has shadowers who follow patients through the entire continuum of care, not just the surgery, from the parking lot to the pre-op appointment, to post-op period, to rehabilitation period, and they found some really interesting opportunities for improvement. One of the big challenges that I didn’t know about initially until learning about this example was that about 90 percent of patients who undergo hip or knee replacements nationally end up after surgery going to an inpatient rehabilitation facility to continue their rehab. So what Dr. Digioia and his team realized after having patients talk to these shadowers, and the shadowers making their own observations, was that there were two problems that they identified in their clinic. The first is that patients really weren’t prepped for how to think about and what to do to manage their postoperative pain well. And that wasn’t communicated in preoperative appointments. Additionally, they noticed that patients had a lot of pain after the postoperative period. So they went to the anesthesia literature and collected best practices, optimized pain control. They had numbers that 99 percent of patients on post-op day one said that pain was not a problem keeping them away from rehabilitation time, and they decreased the percentage of 12

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patients going to inpatient rehab to 30 percent, down from the 90 percent national average. So these are real opportunities. You think about the cost implications of something like that, and the quality implications of why patients are needlessly suffering from pain after a surgical procedure. You see how some of these methods can start transforming care. I think the other major area that I would just highlight briefly is on the administrative side. One of the things I always wonder about with us is if we had sat on my mother’s hospital’s intensive care unit quality improvement committee, and we shared her story and we pointed out how difficult it was and how detrimental it was for her not to have a critical care doctor taking care of her in those early hours, would that have been more powerful than a letter or a lawsuit? Maybe. This is I think a really important way that patients also can engage in health care. In my state, Massachusetts, we now have patient and advisory councils that are mandated by the state to be present in every hospital. And I think the best way that these processes play out is that you have these expert patients who’ve had good or bad experiences within the hospital. But they are able to contextualize their experience into a larger picture, really constructively sharing how they think the hospital can tackle some of its most vexing problems. And you get this new collaboration and information stream that you never ever had before. In one of the most profound examples that I read about where a patient and family advisory council played an important role, was one hospital that bravely wrote about this experience where their patient and family advisory council told them, “We have in your clinic, in your obstetrics clinic, pregnant women with healthy pregnancies that are expected to be carried to term, sitting adjacent to women who are pregnant but where there was fetal demise or severe genetic anomalies, and where it was going to become clear that they were not going to be able to carry the pregnancy.” So, you had this profoundly inhumane juxtaposition of people who were living a joyous part of their life and people who were suffering through a loss. And you hear that story and I think the first reaction that we all have is, how could they have done this? What in the world would’ve made a clinic set up a waiting room like this? But I think the answer is probably this. Both of those groups of patients are seen by the same clinicians. They are seen in the same clinic rooms. And a lot of the same equipment is used and utilized for both patients. So this was the care process that started from the clinician and the facility and built out, as opposed to originating from the patient experience through the continuum of care and then very early realizing something is wrong here. So as we move forward, I think examples of partnerships like this give me hope. I think there’s promise there. And the challenge now is to expand the breadth of these interventions and to roll them out, to scale up these interventions. And my hope is that many of you in this room will be building the tools and the new sets of approaches that enable us to do this. This experience for me has really opened up my eyes to the importance of patient- and family- centered care, so I’m sitting on patient and family advisory councils now and thinking about new opportunities for partnership and collaboration in care. And I think the need for those of us working in health care to incorporate patient and family voices is really urgent. Today and tomorrow across the nation, there are patients whose survival will really depend on this. Their lives, like my mother’s, and they have a photo of her here, really hang in the balance. With these lives on the clock and as hours and days tick by, we need to do everything within our power, everything possible to listen to family voices and partner with patients to avoid repeating these terrible mistakes and improve health care. Thank you. MS. BECHTEL: Thank you so much, Jon. That was incredibly powerful and moving. And I think you could not have possibly done a better job of sharing with us the reasons that we look to 13

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care, where we are getting higher patient satisfaction, lower costs of care, and improving patient quality through improved knowledge. Our next steps are to add five to seven new decision aids in this year, five we’ve already committed to, two more that we’re considering and two key elements that are very patient centered. One is that we’re moving this conversation upstream from specialty into primary care, and having conversations and decision aid ordering being centered there for most of these health conditions. And the second key thing is that we’re automating recording of patients’ knowledge, their values, and their treatment choices in the electronic medical record; they can complete this information online and it goes into electronic medical record, where the provider can access it at the point of care and have a more engaged discussion with the patient about their treatment choices. I want to acknowledge the funders as well as the many collaborators and clinicians that were involved in the work to actually get this work done and the slew of external advisors as well. And thank you very much for your time and the opportunity to present. Audience Participation and Open Discussion MS. PAGET: Thank you all very much. So, now is the time for you all to think about what you want to contribute to this dialogue. What kinds of questions you want to ask and while you’re thinking about that, I have a question for any and all of you. Clearly there’s a role here for leadership and there’s a role here for system support, infrastructural support. You all are several years into what you’re doing. As you reflect back, is there anything—I’m seeing Jeff as kind of a clinical champion—is there anything that you think might have made things easier or is there anything that, as you reflect upon it, would make other institutions’ process smoother in knowing what you know, because now you’ve got multiple years of experience? David, you want to start with that? DR. ARTERBURN: Sure. I think the key thing that comes to mind for me is that having a partnership with the Informed Medical Decisions Foundation was really critical from the outset, because having expertise in how you do shared decision making and being able to bring that to Group Health, an organization that actually valued all these things, patient education and higher quality of care, they really understood unwarranted variation. But they really didn’t have a clue how to actually get shared decision making into practice, and drawing on the resources of the Foundation and others like them, and me being able to play a role in helping translate that into the system was critical, I think. DR. BELKORA: Well, I don’t want to belabor it too much, but having a workforce, so we had the clinical champion, but then having coaches. And so if you can afford it on a staff basis, and I think as we’re moving toward accountable care partnerships at our institution, I’m starting to see real investment, as opposed to, I think in the past fee-for-service organizations have been a little bit reactive, like the clock starts ticking when the patient shows up for a visit. Now, we’re investing in nurse outreach and other kinds of outreach to patients well before a visit and follow up afterwards. So, I think coaching and the kind of human element at the right level, doesn’t need to be necessarily a very highly licensed person, it can be a trainee or someone somewhere in between, that would be the other key element I would point to. MS. PAGET: Grace, what would you do differently if you had to do it all over again? DR. LIN: That is a good question, Lyn. I think one of the things that we really underestimated was the amount of manpower and amount of time that this was going to take. We 54

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were very optimistic, as everybody is at the beginning of projects, saying, “This is going to be great. We have a good champion. We have willing patients.” And really what we found was that the steps needed to change the culture first of all take a long time, but also take a lot of sustained effort from the top down and the bottom up. The patients need to push. But also the organizational leadership needs to be there to lead the change. MR. CLIFFORD: My name is Dave Clifford. I’m a consultant to PatientsLikeMe as well as a number of other organizations. I tend to think about these things from a policy perspective, which is somewhat different. And, looking for a solution in this framing, I think that one of the things discussed was the very positive impact of using people who had planned on becoming doctors both on outcomes in the clinic, as well as professional outcomes. Would there be any way for an organization such as the American Association of Medical Colleges to start thinking about using these sorts of experiences as a criteria or bonus points for getting into some of the higher level medical schools? To me, that seems like an implementable pathway, especially as we’re reconsidering what the MCATS should look like in the future. Thanks. MS. DAY: My name is Nancy and I’m from the State of Maine, too. And I would like to help you get into the only medical school we have in Maine. We only have one, so we can go to 100 percent quickly. The second thing I wanted to ask David was, I have been doing some work to embed shared decision making into a new kind of value-based insurance plan. And as I talk to consumers about shared decision making, the module that seemed to resonate best with them was the one on colon cancer screening, and I was wondering why that wasn’t one of the modules that you incorporate now. They seem to love to know there are choices. DR. ARTERBURN: That has to do with a cultural timing issue, where we had an opportunity to really engage our specialty care providers, so the specialty care providers were taking ownership over these elective surgical procedures, and our state legislation actually specifically called out elective surgery as being a high-variation and high-cost concern. So, we were focusing in specialty care for that reason. Now, we’re moving toward primary care, and there are many more opportunities there, and many of the treatment decisions that we’re talking about will include those in the future. So we’re moving toward primary care. MS. RICCIARDI: My name is Lygeia Ricciardi. I’m with the Office of the National Coordinator for Health IT, and I wanted to make a couple of comments that I think are relevant, not only to this panel but to some other discussion earlier this morning. There is a lot of discussion about the important role that technology can play, could play, should play in enabling real patient engagement and shared decision making. There was a comment earlier this morning about whether we should have a right as patients and consumers to have access to our information. That right exists already under the HIPAA privacy rule, but many people are not aware of that. As we bring the health system increasingly from a paper- based one to an electronically based one, it becomes easier to access that right. And specifically through something we call Blue Button. We’re enabling patients to access their records directly themselves in electronic format, which again is a given right. Under the program that we’re rolling out right now, called Meaningful Use, which is a large incentive program, we are requiring participating providers and health care hospitals to provide patients access to visit summaries, so that they know what’s going on when they have an interaction with the health care system as well as educational materials. And in the current stage, which is now currently rolling out, we’re requiring patients to be able to view, download, and access their health care information electronically, which is a big deal. So by this fall and next 55

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January, any patient who sees a provider who participates in this program will have that ability, and I think that will really free up a lot of opportunities for exchange of information. MS. PAGET: Lygeia, could you comment a little bit on what the picture is going to be for assessing the patient’s access and ability and success in doing so? I hear from a lot of folks, “My pediatrician has introduced a patient portal, but it’s not meaningful for me in my needs.” What is the office’s plan—what are we going to learn? MS. RICCIARDI: That is a great question. One of the things we have done is to build into this Stage Two requirement that patients be able to view, download, and transmit their information to actual thresholds to show that patients are actually doing so. So, 5 percent, and I know that that isn’t an incredibly high number, but 5 percent of patients must actually have taken advantage of these services. Which we’re thinking will really encourage providers to have a conversation, not just to turn on this functionality and say nothing about it, but to really start that conversation. I also want to mention that we have a pledge program, called the Blue Button Pledge Program, through which we’re working with providers, but also payor organizations, to encourage people to provide digital access to health information to consumers and to start having these conversations, so patients can really be partners in their care, and we’re providing a lot of materials that providers and others can use. MS. PAGET: Thank you. So that is the second pledge program we’ve heard about today. We might need to think about unifying our pledges in some way. Matthew. DR. WYNIA: Hi, I am Matt Wynia. I’m with the American Medical Association. I’m the Director of Physician and Patient Engagement for the Improving Health Outcomes team and I just could not be more enthusiastic about the panel. Both this afternoon, but to me this really dovetailed nicely with where we were heading this morning. So the issue I want to try and raise is to bring together I think, some of what David started to get at, in going into primary care. And some of what the program, well, to a certain extent both PAMF and UCSF are doing in terms of—one of the challenges or limitations of decision aids as we currently know them is that they are all about making a discrete decision around a preference- sensitive point in time, and so it’s a little bit like taking a class. And when you’re done with the class, you move on, and hopefully it made a big difference in your life, but you’re going to continue in most instances, for my patients at least, to be managing the condition that you’ve got. It’s not a one-time decision. I’m an infectious disease doctor. Most of my patients have AIDS. There isn’t a great decision aid out there for me. Because I’m probably making, I’m going to say 50 decisions in an average patient encounter, and none of them are entirely discrete or they are rarely entirely discrete. This is about managing a condition over a long period of time, and my patients don’t need a single decision aid. It’s not a class. They need course work that lasts for weeks, months; this should look in my view something more like the diabetes prevention program or lifestyle coaching. And that’s where I’m so happy to hear what you guys are doing in terms of that. Because I think breast cancer can be analogous to HIV infection. It can be a chronic condition that you manage for some period of time, not always, but it can be. And I’m wondering whether there is more thinking around moving this sort of discrete point-in-time decision aid philosophy back a step, toward managing conditions over a long period of time that are not so much a single preference-sensitive point in time, but a series of decisions that you have to make at home all the time about whether to eat this or that, whether to exercise now or later, whether to take my meds, whether to take a break, whether to trade off; the things that our patients talk to us about in terms 56

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of the actual life situations that make it hard for them to do what they often know to be the right thing, sometimes don’t know to be the right thing. MS. PAGET: David, do you want to speak? Or should we, we also have Michael Barry next at the mic, so we could actually have Michael talk about that, too. DR. ARTERBURN: There are decision aids that help—so there’s Living Well with Chronic Disease. There are decision aids that can help prepare patients to understand key management philosophies about managing their diabetes, managing their depression, managing their anxiety over the long term. And also I note in our knee osteoarthritis cohort, many patients get these decision aids more than once, because they are coming back to see the orthopedic provider and the first time they said no, now they are thinking about it again. So I agree with you, there are many opportunities here. We can’t have decision aids to support all of them per se, but more of a culture change around providers and patients’ expectations and the way they use information at the point of care. DR. BARRY: Just on that point, in my own practice, where we can electronically prescribe decision aids, I just had a woman who I had prescribed a colorectal cancer screening decision aid a couple years ago, and we talked through it; then [she] comes in with her hip bothering her progressively [and] said, “Gee, do you have something about that?” That’s the kind of culture change. Now, how much of that we can do outside the context of decisions they are facing, the general education Sherrie talked about; or do we do it in the context of, if you will, earlier decisions, like about screening that first medicine you take, maternity decisions, and then norm people up for the big problems later with heart disease and cancer and other things? So it is a long haul and I think figuring out how to change the culture is what it’s about. I’ll just come back to a question around the aligning incentives. Because at GroupHealth, although it doesn’t make it easy, there are aligned financial incentives, and maybe we’re moving in that direction with the ACO movement. There’s a lot of fee-for-service medicine out there and even how clinicians are paid under an ACO umbrella may be some component of piecework there. Grace had mentioned that one of her successful interventions with a group visit was being able to bill a 99213, and as a primary care doctor we think about that all the time. People worry about, “Gee, why should we have to pay clinicians to do the right thing?” But since we’re comfortable with sometimes paying clinicians to do the wrong thing, I’m okay with it. As an example, I just got a memo from my own physicians’ organization that to get billing a 99214—really the pot of gold at the end of the rainbow—in order to do the detailed exam that’s part of that, it was no longer sufficient to examine two or more organ parts, you had to examine five or more organ parts. I had missed the randomized trial that showed if you examined five organ parts people were happier and healthier. But it strikes me, could we just move that to saying that if we could check the six steps of decision making, we’re now developing metrics, were patients informed, did someone ask—could we move the reimbursement from doing things that clearly don’t work, or more the tradition-based medicine, to now, with 86 randomized trials of shared decision making and more on the way with Cochran, to really shaping how care is paid for, to things that do make a difference? MS. PAGET: That’s a nice vision. Val, do we have something from the radio audience? MS. ROHRBACH: Yes, two questions. The first from Kevin Kenward of the Health Research and Educational Trust. Kevin asks, “How can costs be inducted in shared decision making when physicians don’t always know what the costs of a treatment or medication or procedure are?” 57

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The next question is from David at Johns Hopkins, who asks, “Our doctor friends all tell us they don’t have time during the brief time they have during a patient visit for the kind of patient engagement being discussed today. How does the panel respond to that?” MS. PAGET: Let’s take the time question first. I believe there are some data out there that are pretty much indicating that that’s not an issue, but who wants to speak to that? DR. LIN: I can start. We actually heard that a lot. We surveyed our physicians at the beginning of the project, and a lot of them said actually what David’s physician said, “We’re already doing shared decision making, but even if we aren’t, we don’t have time to do it.” When we went back and we did focus groups with the physicians later on, the ones that had actually utilized decision aids—we actually held focus groups with physicians who were high utilizers and those who are low utilizers. What the high utilizers said in large part was, “You know the decision aids saved me time. The patients came in with better questions, they had a knowledge base, I could have a better conversation with them,” so really I think this whole notion—I think once the physicians had the experience they no longer thought that shared decision making took too much time. DR. ARTERBURN: Our experience at Group Health paralleled what Grace found, it was that the providers didn’t think this took more time and the patients actually were just better educated and had better questions. MS. PAGET: Thank you. The cost issue, if I’m understanding it correctly, is kind of how to build that in, and this comes up a lot because we have such variance in costs in this country, and I know that from the perspective of the developers of tools, it’s all been very challenging to address the cost issue in that. And then costs in general is a very broad category because there’s financial costs, there’s also quality of life costs, and so forth. But I wonder if any of you, and maybe Jeff from the breast cancer program, what do you find that is important to patients; does that come up, when the interns are soliciting questions from patiens? DR. BELKORA: We keep track—we keep copies, deidentified copies of all the question lists that patients have and you know, we have looked at them to see what kind of recurring themes come up and in the area of costs, there is a concern. And we see it reflected in the question list about out-of-pocket costs and that sort of thing. I think the question was about financial cost; clearly patients also have a lot of questions about the costs in terms of their time and attention and quality of life and other issues. So, I have to say though that we’re treating an insured population in this Breast Care Center, and so perhaps it’s just not quite as salient and not as reflected in our question list as it will be when we are spreading this model much more broadly. And I think we need to point to the Choosing Wisely program and other kinds of initiatives to say this is a really big deal that we need to get our hands around. MS. PAGET: I know we are going to spend some time tomorrow on this topic as well. MR. ROEHR: Hi, I am Bob Roehr. I’m here today as a journalist. I’m writing for BMJ. I’m also drawing upon my experience as a patient activist on a couple of advisory committees at NIH, going back to HIV activism and things like that. And what I’ve heard today basically has been sort of a just-in-time education involvement, decision-making type thing, which is well and good as far as it goes, but I think there really needs to be a more fundamental look at educating the general American public to their obligations, in many ways, as citizens to participate in this. You can say that when most of our health care structures were created, health care was 3, 4, maybe 5 percent of our GDP; today, it’s almost 18 percent. Nobody believes it’s ever going to shrink; it’s going to continue to grow. It’s only a question of at what rate. And when they were 58

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created, interventions were primarily for acute conditions. Now it’s predominately chronic conditions, so the role of the person is changing, the role of the patient is changing, and we have to, I think, as citizens, understand this and begin to educate our people at the primary level of their role as good citizens in taking care of their own health and participating in the health care process. There’s one model that has been developed at STEM, education, science, technology, engineering, and mathematics, which I think could be very much of a model to build upon though. That’s aimed at primarily college-aged people but we could start there and move back downstream. I think it’s very important to do more than simply train people to respond to the immediate decision. We have to make the framework and the education broader than that. MS. BROWN-TATUM: Good afternoon, I am Crystal Brown-Tatum. I’m the founder of Sisters Network, Shreveport. We’re an affiliate chapter of Sisters Network, Inc., which is the only national African American breast cancer survivorship organization in the United States. And my question is, I used to be on the Board of Susan G. Koman, and we funded a patient navigator at LSU Shreveport Hospital and it was, in my opinion, a dynamic opportunity for a nurse practitioner or PA. And after the first year of implementing the navigator, the grant was not renewed with the Northwest Louisiana affiliate, and she just went away. And based on my own horrific experience as a breast cancer patient and working with some of the most underserved women in the breast cancer arena, that patient navigator role was critical because LSU had a dynamic rate. If a woman was diagnosed with breast cancer, she was having surgery within 48 hours. On my own journey, I had a 4-month gap in treatment from diagnosis to chemo, because I wanted to keep my hair over the summer, I didn’t know any better. I didn’t have anybody that was a champion for me. I just was very uneducated and ignorant and I just thought, oh, I’ll just start treatment in 4 months. So, my question is, the decision-making aids, can those replace the patient navigator role or do you feel that they strengthen the patient navigator role? If the hospital or clinic doesn’t have someone that’s serving as a navigator, are those tools going to be enough to possibly fill the gap that may exist because the role’s not there? MS. PAGET: Crystal, can I ask you for clarification here, is this kind of coming from a resource issue, saying if there’s not funding for a navigator, can the tools stand alone? MS. BROWN-TATUM: Yes. MS. PAGET: What do you think, Jeff and your team? DR. BELKORA: Well, Harold Freeman and others who have kind of defined this field of navigation have begun to just define it as helping patients overcome barriers whatever they are, and so some of the barriers are logistical access to care. Some of them are emotional support and other forms of support, and we focused in this decision-making area on the kind of cognitive information processing and decision-making issues. So, I would say is it one or the other, I think they’re complementary. A navigator that’s sort of high-touch facilitation and coaching that my team provides is very complementary with the written materials. In the decision-making arena, this all boils down to critical reflection, to getting people to think and process, and so that doesn’t just happen one way or the other, it happens through multiple kinds of modalities. I think you could prioritize depending on your population and the needs. In some populations, it might make more sense to invest in patient navigators who are trying to get people access to this system, and if that’s the biggest barrier—I 59

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mean I guess I would just start with sort of the biggest barriers and design the program around the local need, but I think there’s room for really both. MS. DAY: I’m just going to talk about when I finished up with my treatment, after I had my surgery, at my post-op recheck. I volunteered as a patient, actually said to my doctor, “Is there anything I can help you with?” because I was just so relieved to be over with my treatment, and she looked at me like I had two heads. I wondered if you considered recruiting experienced patients to do some of this work; this would be for Jeffrey and the other groups, maybe would be nurses would get a great deal of experience from this. Pharmacologists and social workers would all gain from this type of experience too. I have one more question. The other question I had is for David. What do you think about advertising for joint replacements and pelvic floor problems and that sort of thing? There’s been a very creative advertisement in my local newspaper with a long full newspaper page length ad with a roll of toilet paper on it, and Consumers Union just recently used that as, what is this ad selling? It seems to me that that kind of advertising would increase procedures rather than decrease, which is when you’re educating and engaging the patients, actually the procedures are going down so I wondered what your comment might be on that. DR. ARTERBURN: I do think they are potentially competing. I think it depends on the way in which the advertisements are being done. But I think in most cases, in our region in Seattle, we have other partners that are advertising for hip and knee replacement products. And Group Health is taking a different approach, and I think it’s one that’s innovative, and we’re eager to partner with other organizations to help try to do that even within our own community, to help translate the kind of shared decision making approach that we can, because many of our patients in outlying community areas see network providers who are in a fee-for-service setting and have the same sort of financial incentives to do the kinds of procedures and to advertise for the types of procedures. We really want shared decision making to be the norm for all our patients and it is a different approach than the advertising approach. MS. PAGET: Jeff, do you want to speak to the first question? DR. BELKORA: Absolutely. We have used pure volunteers already. Survivors of conditions who have either volunteered or been paid to accompany patients and do similar tasks as Ekene and Margot. And I think that is also a potentially kind of sustainable model. So, yes on that one, and I think there was a second component for question—other professionals, right. So I think yes, absolutely the practicum experience as a social worker or as a psychologist or as a nursing student; we’re using premedical students, but we’ve had experience with students who’ve gone on to other professional schools. So yes, I’m very much in favor of that. MS. PAGET: Thank you, and we are now kind of getting close to wrap-up time, so I see we have three people, we won’t make you sit down. DR. MANTEUFFEL: I am Brigitte Manteuffel. I represent the Children’s Mental Health Network at this meeting. I wanted to talk a little bit about SAMHSA’s System of Care Initiative, the Children’s Mental Health Initiative, and that history because it’s very much related to this discussion. That initiative has been funded for the last 20 years to change the way interagency collaboration and family involvement and cultural competence and other factors are addressed in changing how systems that support the mental health needs of children with serious emotional disturbance and their families operate, so that their experience is less fragmented and so that they have the support that they need to actually keep their children in their home and keep their 60

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families together and get their children care that actually helps them improve outcomes and gets them stabilized. One thing that has been very important in that process has been the family involvement factor. And I evaluated the program for 13 years, and one of the things that have evolved over that time is some of the language. So, the language moved originally from family-focused to family involvement, and then a decision was made to move that language to family-driven, so that the level of engagement with the family was taken from a much more passive stance to a much more active stance. And that’s been very important in driving that agenda to make sure that you move to a position of equal partnership. Over the past 10 years we’ve also seen that change with youth involvement. There was a lot of resistance to involving youth in the decision making about their mental health care in the early days, when there was a greater push to youth involvement. But over that time, the program has changed its language, so that it equally represents family and youth in terms of the shared decision making process, with providers, and the acceptance of youth as partners in decision making has moved ahead by light years really, just by integrating families and youth into meetings and integrating their voice and by moving that process along. One of the things that we’ve learned through the evaluation around family involvement is that communities implement as they want to roll out their grants. And there’s a lot of variability in terms of how those models look, and they can range from education to advocacy and some combination in between. So, models like yours and models like patient navigator models and so forth, they run a spectrum. But in the recent few years, there’s been a greater emphasis in trying to understand what the core elements are, and to understand how you can do that in a more organized and sort of data-driven approach to being able to understand what those core competencies are, and then also build a licensing requirement, so that that can also become a reimbursable service; some states have been able to make that a reimbursable service for children’s mental health. So, I think there’s a lot to be learned across programs, and I know how difficult it sometimes is for the mental health community and the physical health community to have time for dialogue, so I wanted to share that with you. MS. PAGET: Thank you very much, that’s really, really helpful. MS. KORNBLAU: I just wanted to bring up again—this is Barbara Kornblau from the Society for Participatory Medicine—the importance of the patient. I hear people talking about the patient as a coach, a navigator, fulfilling the role, but I hear it sort of as an afterthought and I think that I—I haven’t had breast cancer but I have two best friends who have and it looks to me like a fraternity. And they go out of their way to volunteer to help other women with breast cancer, and I see that in other chronic conditions as well, and I think that we need to harness that power because those patients have been through it, they know it, they know more about it than many providers to. They know what to look for. I have a colleague who had a liver transplant, and part of her treatment is to look at lab results and tell the doctor when lab results go at certain levels. So I think that we need to harness the power of patients as equal partners in this to be the coaches. I appreciate medical students, and I think you are all learning a lot and students in physical therapy, occupational therapy, nursing, all of the allied health professions, but I think that we can’t underestimate that role of the empowered patient, the knowledgeable patient who has been through it. And it also gives an extra sense to the person who is now going through it, because there’s that camaraderie, that fraternity. 61

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MS. PAGET: Thank you very much. Really important message. I just want to say thank you for Grace, Jeff, and Ekene, Margot, and David for traveling all this way and for sharing your experience with us. And this has been a real pleasure and rewarding for me to be a moderator today for all of these sessions, and I’ve thoroughly enjoyed hearing all of the comments and suggestions and ideas from our audience here and online, so thank you very much for the opportunity and I think—Christine. SUMMARY AND PREVIEW OF NEXT DAY Ms. Christine Bechtel MS. BECHTEL: So, this won’t take terribly long. I could take all day, but I won’t because I’m actually eager to get back here for tomorrow. This is exciting stuff. So, first I want to thank all of our panelists from both panels today again, and also just say what a terrific job Lyn did in moderating, but I also want to thank you guys, the audience, for being really engaged and really dynamic throughout this day. I think we had a great day, we heard a lot about partnership, beginning with Jonathan Welch, who shared with us a really sobering story about what happens when we fail to listen to patients and families, let alone engage with them. But he also gave us some concrete ideas for the ways that we might engage in actually redesigning the system. We heard a lot about culture change and the need for culture change, and that we can’t get to genuine engagement without that kind of culture change, and when we talked, I think those threads were throughout. But when we talked about shared decision making, I heard a number of key things that would help us accelerate our progress on the pathway. One being leadership, two being a workforce, and three also being competency, and I think we heard that in two different ways. One was competency among clinicians, and the first of all belief, maybe it’s physician activation, that patients should be involved in their own decision making, that families are actually members of the care team and play an important role. We also heard about competency for patients though, and we heard both in the sense of coaching and having the skills and the confidence and the ability to really engage in their own care. But I think we also heard a lot about, and I’m not sure this is the right phrase, it’s sort of this chicken and egg theme that I keep hearing, which is one dimension of yes, we need activated and engaged patients. But then there’s the other dimension of the brick wall they can run into in a health care system that is uninviting and unwelcoming in many examples to patients and families who have that desire to be involved. And we heard a lot of examples of that today, and so I think that again points us back to the need to change culture. I think another observation that I would make is we had some examples where, once somebody got experience in doing something, whether it was shared decision making or maybe engaging patients and families in redesign, their resistance began to melt away and the culture began to change. So I think the question coming into tomorrow will be, how do we think about patients in doing just that, patients as the greatest untapped resource in health care? I heard them described today as a new data stream. How do we harness their power, as Barbara just said to us? So with that, tomorrow we’re going to tackle issues of engagement in the research enterprise. And how we engage patients as partners in generating the knowledge that we need to actually improve care on a population level. We’re also going to dive into how we can engage consumers 62

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in a different discussion around costs and quality; again we heard that previewed today. We’re also going to hear from David Goldhill, who is CEO of the Game Show Network, and I don’t think he’s going to tell us how to do game shows, as much as I would like that, I do love Plinko and The Price is Right. However, he is going to, again, kind of coming back to our theme of, “let’s start with the patient and family members,” he’s going to share his experience with the health care system, and it will be riveting so we’re looking forward to that. Breakfast is at 7:30 tomorrow; we’re going to start at 8:00. We will have coffee, gallons and loads of it. And we will be done by 4:30, so please join me again in thanking all of our terrific speakers from today. 63

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