Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement Workshop Proceedings (2014) / Chapter Skim
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2 Proceedings: Day 1: February 25, 2013
2 Proceedings: Day 1: February 25, 2013
Pages 3-64
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From page 3... ...
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.
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From page 4... ...
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.
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From page 5... ...
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.
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From page 6... ...
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.
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From page 7... ...
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.
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From page 8... ...
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.
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From page 9... ...
" 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.
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From page 10... ...
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.
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From page 11... ...
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?
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From page 12... ...
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.
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From page 13... ...
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?
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From page 14... ...
A few things I want to toss in. When my mom had her hip replaced a year and a half ago, at her transfer to rehab, because they didn't have electronic medical record transfer so stuff had to get printed out and typed back in, they were not interested in proofreading, so her hyperthyroid showed up as hypo in the new system -- potential disaster.
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From page 15... ...
And I think that's a great example. The other thing I would say is, when you went through the list of priorities amongst patients at IVF clinics, is that it actually highlights a little bit of a danger zone, at least on the clinician's side; for the most part I really do think that physicians and nurses try to have their patient's best interests in mind.
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From page 16... ...
And I was a little bit nervous because I wrote my comment in English, even though I do speak Swedish, my husband is from Sweden. And I just dropped them a note and said, "Did I do something wrong?
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From page 17... ...
I, too, am hopeful as slowly but surely we move to these systems where we are holding our health care system accountable for results. And I think the hopeful thing is that we're building an evidence base that shows that these tools -- patient activation, patient engagement, even from a very utilitarian standpoint, to say nothing of the intrinsic good of centering on patients -- that that improves results.
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From page 18... ...
Before I introduce our speakers today, let me just review a little bit of what we hope to accomplish. This session is titled "Patient-Clinician Communication and Tools for Change," and I want to underscore "change." We need change.
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From page 19... ...
We've heard a little bit about that this morning. But we know for sure that in order to embed systematic and sustainable change, we really need to design things differently, and as Jonathan pointed out so eloquently, from the inside out.
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From page 20... ...
Welby to describe really the most familiar route to their real aim: Connectedness, a sense that someone where you go for care gets you, knows you pretty well; and continuity, the assurance that you'll be seeing the same caregiver over time. Connectedness and continuity, as I will present this morning, drive patient engagement and patient empowerment, in a powerful way, above and beyond and apart from this simple presence of Dr.
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From page 21... ...
SOURCE: Re eprinted cou urtesy of Blue Shield of C California Fo oundation.
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From page 22... ...
"Em mpowerment t" meaning feeling informed about your health, comfort in asking quest tions, comprrehension, understan nding the an nswers, and confidence in your abilit to make he c n ty ealth care de ecisions. Tho ose empower rment measu in turn independentl predict en ures i ly ngagement, t sense tha you're taki the at ing an active role in your own care, really the goal fundamen e r r ntally of pati ient-centered care as we're d discussin it.
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From page 23... ...
Those who feel very comfortable asking questions, again, are very substantially more likely to be engaged in their care; those who understand the provider's answers; those who are confident in their decisions in each case; in each of these there's a strong influence on patient engagement. One route to patient engagement beyond the regular personal doctor we discussed earlier is team-based care.
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From page 24... ...
FIGURE 2-4 Patients wh feel their clinician kn F 4 ho nows them w well, based on care setting. n SOURCE: Re eprinted couurtesy of Blue Shield of C California Fo oundation.
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From page 25... ...
" and questions like that. And most patients don't participate effectively in treatment decisions, and although we have really good patient education programs in some areas, those improve knowledge but they tend not to be associated with important health outcomes.
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From page 26... ...
So building, not on that evidence exactly but building on that notion, we actually developed what we called Coached Care. And using personalized information in the patient's medical record in an algorithm that maps treatment decisions, we actually met with patients before an office visit, coached them to be more effective during the visit, and followed them up with phone calls.
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From page 27... ...
FIGURE 2-5 An early al F 5 lgorithim for treatment. r SOURCE: Re eprinted with permission from Sherr Kaplan.
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From page 28... ...
I'm actually feeling a little bit overwhelmed. I feel like a bit of a fraud because I'm looking at all the names on the lists and all the experts here.
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From page 29... ...
And attitudes are an incredibly important part of communication skills and patient engagement. So, what are some of physician competencies that have been talked about?
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From page 30... ...
• Patient engagement through shared decision making is linked to increased patient satisfaction, health outcomes, and quality of decisions. • Requires competency at the patient, provider, and system level.
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From page 31... ...
It has been shown to be a very important part of that. We also know these very same competencies can be used in a team-based kind of model, and so Lagare's work, which was highlighted in some of the articles in Health Affairs, really gets at that.
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I don't see a lot of electronic medical record systems, but the ones I have seen certainly never had any involvement by any professionally trained information technologist. And they should.
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From page 33... ...
So I'm wondering if you could give us some more insight as to how physicians are viewing this drive-pull-push desire for more patient engagement. And what advice you have for those of us who are not physicians about how to create and support physician champions whether in medical education and training or elsewhere for this general effort.
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From page 34... ...
I also think the boards can be helpful here by creating tools and mechanisms to help people get better at this. I'm always struck that when I work with older physicians, and we had a couple examples of this at Yale, that when the older physicians learn communication skills, they actually find greater satisfaction in their practice and there are actually some good data around that.
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From page 35... ...
DR. BARRY: Mike Barry from the Informed Medical Decisions Foundation.
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From page 36... ...
We have teams of physicians, nurses and other health providers that are led by the community health workers, and they see clients in the community, which is where culture lives. And I think we have to look at getting out of our classic organizational health care into the community, valuing many different people on the team that can truly change health care, and we have seen a tremendous difference in patient engagement with this model.
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From page 37... ...
Our team has been working developing decision aids since 2004, and we've taken the approach of creating very lightweight, very small footprint tools that can be put in front of the patient and the clinician. And the clinician and the patient can then review them together, and the tools will contain the options and risk and benefits of each of them and they can discuss together and arrive at a decision together in the office.
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From page 38... ...
And also along the line of curriculum, there's an extraordinarily large amount of bias that we've heard our consumers talk about feeling from their physical care providers. In a world where we're going to be exchanging health information and my diagnoses are going to be on my electronic health record, do I want my podiatrist knowing that I once tried to commit suicide?
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From page 39... ...
We also ought to be looking at the personal health records as well as the electronic medical records. I actually was working with a doctor to do that in her specialty care for Parkinson's care.
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From page 40... ...
You need training programs around how to use the information, and one of the things I wanted to make clear is with the personal health record, and the new Choosing Wisely Initiative by the American Board of Internal Medicine in concert with specialty boards, is they're teaching physicians what not to do. At the same time, we've got an indemnified population out there committed to the notion that they deserve service and they deserve expensive service.
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From page 41... ...
I'm not just going to leave it out for you to lay a bunch of choices. In fact, we know that's not a very functional way, and in fact Mike Barry's work in decision aids is designed to help avoid some of that.
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From page 42... ...
And before we start this, I just wanted to read for you something that was written in the Health Affairs journal that everyone has referenced this morning by Jessie Gruman. I know a lot of you know Jessie, and she writes a narrative piece about her fourth cancer diagnosis.
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From page 43... ...
She is a premed intern. Her current projects include studying the biology surrounding breast cancer recurrence, designing support programming for metastatic breast cancer patients, and participating in the patient decision support program at the Breast Care Center.
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From page 44... ...
What I speak to you about today is an initiative that was funded by the Informed Medical Decisions Foundation, the Partners of Medical Decision Making Program, which is a demonstration program designed to implement decision aids into primary care practices. So, what's the problem?
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From page 45... ...
And early on in our project, our steering committee said, "You know, I think that shared medical appointments would be a great way to institute shared decision making and engage patients and try to distribute decision aids." So, we solicited interest from our geriatricians who were interested in doing shared medical appointments. And we set up a series of three 90-minute sessions whose goal is to engage patients in care and perform functional assessments for conditions that have a high impact on health outcomes and aren't consistently done in primary care; things like memory assessments, fall assessments, screening for depression.
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From page 46... ...
But I do want to just introduce what we're talking about a little bit, to say that we did start with a needs assessment about 10 years ago in the area of breast cancer, where I was lucky to have a partner, Dr. Laura Esserman, who is a real champion, along with other colleagues at the UCSF Breast Care Center, a real champion of patient-centered care.
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From page 47... ...
I am 1 of the 10 premedical interns at the UCSF Breast Care Center, and I am the Tuesday morning intern, which means that I call all the newly diagnosed breast cancer patients coming in with Tuesday morning appointments. So, to demonstrate a little bit of our process, I'm going to tell you about my patient Ella.
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From page 48... ...
We have years of qualitative and quantitative survey data from our patients that we've published telling us how much they appreciate the service. So, here are some representative quotes about the decision aid.
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From page 49... ...
At UCSF we don't have an undergraduate patient population, but we realized across the Bay in Berkeley, there are 30,000 undergraduates and about 3,000 of them at any given time are premedical students. So, we decided that we would look to a volunteer workforce to extend our coaching capacity, again moving out from the Breast Care Center into other clinics.
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From page 50... ...
It is a pleasure to be here. I'm David Arterburn from Group Health Research Institute in Seattle, and I'll be talking with you today about our work and our story behind implementing patient decision aids to improve patient engagement and to reduce costs.
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From page 51... ...
An so we had many patien one-qua e nd d nts, arter of our p patients view decision aids wed online. For providers, we also provid smart ph p e ded hrases.
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From page 52... ...
And these project managers were critical throughout the process to understand the workflows and to get the decision aids in practice, because each practice had different workflows and work styles. This work with project managers led to streamlining of the process for pre, during, and post visit care, which dramatically influenced the rates of decision aid delivery.
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From page 53... ...
Among the key steps that were required to initiate this culture change was requiring all the providers in specialty care to review the patient decision aids that their patients were going to watch. Also, within the second year, we had a half-day CME where we pulled all the specialty providers and the surgeons out of clinical practice and had them work with outside experts on training around shared decision making.
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From page 54... ...
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.
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From page 55... ...
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.
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From page 56... ...
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 preferencesensitive 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.
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From page 57... ...
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]
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From page 58... ...
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.
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From page 59... ...
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.
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From page 60... ...
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.
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From page 61... ...
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.
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From page 62... ...
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?
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From page 63... ...
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.
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