Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement Workshop Proceedings (2014) / Chapter Skim
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3 Proceedings: Day 2: February 26, 2013
3 Proceedings: Day 2: February 26, 2013
Pages 65-174
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From page 65... ...
We are actually going to start the day focusing with this illustrious panel on patient and family engagement in what we have called knowledge generation for care improvement, a.k.a. research.
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From page 66... ...
KNOWLEDGE GENERATION AND CARE IMPROVEMENT Dr. Susan Brown Trinidad (Moderator)
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From page 67... ...
Berman Professor of Bioethics and Public Health in the Department of Health Policy and Management at Johns Hopkins Bloomberg School of Public Health and the Deputy Director for Public Health in the Berman Institute of Bioethics. Her current research projects examine ethics for a learning health care system, including quality improvement and comparative effectiveness, informed consent in randomized trials, ethics issues that arise in international health research, and ethics and public health preparedness.
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From page 68... ...
I am then going to say just a little bit about patient engagement. Probably not necessary to say very much for this audience, but I want to bring it in as a bridge to get to paradigm number two, which is what I am going to call the "ethics in learning health care system paradigm." I will again then talk about what our ethical requirements are for paradigm number two.
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From page 69... ...
One such claim is that research poses risks. We have uncertainty about whether there is clinical benefit from the intervention we are giving to a patient, whereas the assumption in clinical care is that we only give treatments where we know that the benefits outweigh the risk.
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From page 70... ...
There is a lot of discussion, appropriately, currently about patient engagement, and of course this is much of the focus of today's meeting. I imagine part of what you talked about yesterday was the need to have a lot more shared decision making in clinical care.
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From page 71... ...
This slide is the one slide that introduces some of the work that my colleagues and I have done that says a learning health care system is an ethical good. If we want evidence to give to patients for shared decision making, we have to have good evidence.
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From page 72... ...
Thank you. Meaningful Choice in a Learning Health Care System: The Relationship Between Privacy and Data Sharing for Research Ms.
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From page 73... ...
A comprehensive privacy and security framework is desperately needed, not just for medical information, but really for consumer individual information writ large. Until we have that, it is probably not going to be this open, safe, secure, facilitating of health IT and health information exchange that we would like.
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From page 74... ...
I do not mean this in a derogatory way because when I look at the whole idea of patient engagement, I am usually thinking about it as a patient or a father of a patient. It is very important to think about this learning health system, and that is the context in which we are discussing this today.
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From page 75... ...
But this is mostly a free text thing, just a first step in the learning health system. Now, we have activated patients.
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From page 76... ...
Clayton Christensen thought this was a very interesting idea and wrote about it in his book, The Innovator's Prescription, because this gets the data instead of in institutional electronic health records. It gets it under the patient's control.
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From page 77... ...
Patient Engagement and Data Sharing for Improvement, Innovation, and Discovery Dr. Peter Margolis and Ms.
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From page 78... ...
The model that we are presenting brings together all the stakeholders in the process -- the patients, the clinicians, the researchers -- to improve health outcomes as part of a learning health system. Our effort began in 2007, when the pediatric gastroenterology community as part of the American Board of Pediatrics Maintenance of Certification program organized a collaborative network called ImproveCareNow that was dedicated to improving the health and lives of children with Crohn's disease and ulcerative colitis.
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From page 79... ...
A lot of anxiety and depression in kids with chronic illness results from this feeling that they are not in control of their own health care. While some aspects of chronic disease are that way, it is important to remind young people that not everything is beyond their grasp and that is the first step to becoming an engaged patient in my opinion.
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From page 80... ...
FIGURE 2-7 ImproveCa F 7 areNow socia media. al SOURCE: Re eprinted with permission from Peter Margolis.
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From page 81... ...
We also use it for population management. Data are also used to produce monthly quality improvement reports where the sites can see their performance and compare themselves with all the other sites.
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From page 82... ...
For example, there was a 6-day perio when she went from w , od waking up th to four t hree times a nigh to ht waking up no times per night. When she revi u p W iewed the da together w her doc ata with ctor, she reca alled that she had been put on Amoxic h t cillin by her primary care physician f sinusitis.
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From page 83... ...
I would like to have that on the record. Regarding the Blue Button, the data format may be cheesy and little and so on, but trust me as somebody who saw his own industry destroyed -- typesetting -- destroyed by desktop publishing, which started out as cheesy and meek, watch out, brother.
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From page 84... ...
This area of understanding … the evidence whether the evidence is real. The fundamental assumption that there is evidence-based medicine is potentially flawed, and that is what is so interesting about the learning health system.
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From page 85... ...
DR. MONTORI: Victor Montori from Mayo Clinic.
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From page 86... ...
We have done now four focus groups with quality improvement and comparative effectiveness researchers who speak to the times when they did not embark on a project. I think there is one category, which is of people who thought about doing a project and abandoned the idea.
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From page 87... ...
It is a matter of leadership to make it a priority that we are all aimed at the same thing, which is better outcomes for patients. What we found is that when we as leaders work in that way, it is not perfect, but there is much more alignment between the people who consider themselves researchers, the people who consider themselves quality improvement people, and the people who consider themselves doctors or patients about what they are doing and how important it is for their work to fit together.
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From page 88... ...
Now, we are switching gears to our second half. We will start off with hearing from Evette Ludman from the Group Health Research Institute in Seattle.
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I am excited this morning to be sharing with you some data about what our patients think about data sharing. I am Evette Ludman from the Group Health Research Institute.
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From page 90... ...
Group Health researchers are leading this study. A the ACT study researchers are G h And T leading th study.
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From page 91... ...
Others took it to mean i m ve ific k interests. Wh we asked hen them abo other con out ncerns, they said things like, "I woul like them to go into th cancer field." l ld he "I do not see a lot of research wit ovarian ca t th ancer." Final we asked them how acceptable would it have been if we had had dif lly, d a w e fferent types of strategies rather than the opt-in strategy that we used for giving cons for data sharing (see s n sent e Figure 2 -- 12)
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From page 92... ...
O consenter endorsed d ata fu fo al Our rs reasons against as we as reason for consen a ell ns nting to data sharing, althhough reason for ns outweigh concerns in importan hed s nce. Final I will me lly, ention that ou ACT stud participan are elderl very altru ur dy nts ly, uistic, and ha ave extraordiinary trust in Group Hea and the ACT study r n alth A research, yet they still waanted to be a asked for permi ission.
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From page 93... ...
a devastating disease. Clearly, his family was overwhelmed with what they would need to do to try to change his outcome.
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From page 94... ...
It is not a given that we are going to be able to help people achieve cure for all of the conditions that we might have within the system, nor will we in our research or in our clinical trials, but we want to give them hope. That is a key component.
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From page 95... ...
I want to say a couple of things that Laura talked to me about yesterday. One was the issue of data sharing.
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From page 96... ...
You can also see that who article w n ata Y ole written up in Nature Biotech. And then The Wall Street Journa did a little study on tha n S al at.
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From page 97... ...
And thank you, Laura, so much for your participation. New Paradigms for Patient Engagement in Research for Care Improvement (Part 2)
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From page 98... ...
People who will join the study follow the protocol on themselves and allow their data to be shared with the group for joint analysis. It is intensely participant-driven health research.
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From page 99... ...
And this continuum of roles and power has been really foundational in our thinking about participation and the governance of these projects. What are the underlying cultural drivers of this new era of participation, of engagement in health science and development?
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From page 100... ...
In addition, given the makeup of this room, I suspect many of you are familiar with our use of information technology. We have one of the largest electronic health records in the world, with more than nine million members being cared for daily through the use of an electronic health record, and they have access to that data through a personal health record on kp.org.
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From page 101... ...
We were able through kp.org, which is our personal health record, to change opt-in features so that people could start receiving requests for participating in this study via e-mail. We have also done clinical interventions.
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From page 102... ...
Because of that, because of some of that uncertainty about how do we do that, making that moral choice accessible enough to each participant, we have emphasized some ethics team kinds of gatherings way up front of the actual operationalizing of the consent process. For example, Reg4ALL has convened an ethics team, not an IRB.
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From page 103... ...
It gets all the way back to what Nancy started with: the distinction between clinical care and research. And when you start asking doctors to enroll their patients in clinical trials, you worry a good deal about therapeutic misconception and the pressure that could come to bear.
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From page 104... ...
The database that Holly Parker described of Kaiser Permanente certainly addresses a lot of data gaps that we as researchers trying to link health and environment and locational effects do face. Now, my question is if a private researcher who also happens to be in the past a member of Kaiser Permanente who is doing some research and wants to further her efforts on data gaps, would that be available to people like me?
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From page 105... ...
Yesterday we were talking very actively of our shared decision making. And obviously one of the choices that patients can make is to participate very actively in the kind of opportunities that you are talking about.
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From page 106... ...
Each of our organizations needs to learn from the patients that we work with to ensure that the data that we use truly advances the science and advances their own clinical outcomes.
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From page 107... ...
Dan Wolfson is really the genius behind Choosing Wisely. This guy has managed to get stuff done that many of us try decades to do with physicians and professional societies.
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From page 108... ...
And one of the things about that market is that there are a lot of folks in that market whose employers are offering them high deductible health plans or consumer-driven health plans. Of the three puny little focus groups that we did, but there have been more focus groups done since, about two of the three groups were with people who had high-deductible health plans.
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From page 109... ...
In the way that we present information, we have to counteract that. As Shoshanna said, we did a randomized, Web-based trial, where we tested different ways to present quality information and cost information in a way that would encourage high-value choices, that is, higher quality, lower cost.
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From page 110... ...
And then the other really big takeaway is I think we always need to pair cost information with quality information, or show this information within quality strata to upfront address consumers' worries, that it is okay to choose a lower cost option then, if you are assured of the quality.
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From page 111... ...
In addition to pairing cost information with quality information, we want to make it immediately easy to identify high performers across the various measures using that strong signal. That really means one screenshot.
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From page 112... ...
And something like the Choosing Wisely campaign is in one way a step in that direction. But even just the kind of sensitization of the public to what health care costs are all about, the way that Marge Ginsburg does in a lot of her work -- these are critical things that are all a part of this situation.
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From page 113... ...
y Since 2005 MHQ has report on clinic data using over 30 HE e QP ted cal g EDIS measu at the ures medical group level for over 150 medical gro g f 0 oups. Both re eports can b found on o website, and be our with fundding from Ro obert Wood Johnson as an Aligning Forces for Q g Quality allia ance, we are creating a consumer facing website that will make it easi for consu ier umers to acce and use ess MHQP's performanc data.
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From page 114... ...
It is a milestone in providing consumers with valid, reliable, and useful health information. Let's hope consumers take advantage of it.
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From page 115... ...
FIGURE 2-1 Massachu F 15 usetts doctor ratings -- Co onsumer Repports. SOURCE: Re eprinted with permission from Cons umer Repor h n rts.
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From page 116... ...
It means patient engagement and informed conversation. Let me tell you what is Choosing Wisely's objective.
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From page 117... ...
Manual feeding in a nursing home costs more money, but much better care and actually does not kill somebody. We have, through John Santa, over 35 translations now by Consumer Reports to convert, which are very technical reports.
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From page 118... ...
This is a quote that is in Modern Healthcare this week by a cardiologist -- by one doctor in Montana in a conversation with each patient, and later in a note to the referring physician. That doctor cites the Choosing Wisely campaign, a specialty initiative, created to curb overuse.
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From page 119... ...
But this type of town hall meeting, say, is definitely public input, but it is definitely not public deliberation. What we need by deliberation, really, is the societal version of shared decision making.
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From page 120... ...
FIGURE 2-1 The impac of differen roles in de F 16 ct nt ecision makiing. SOURCE: Re eprinted with permission from the C h n Center for He ealthcare Decisions.
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From page 121... ...
Some people take out a little. Most of the public thinks health insurance has their name written all over the dollars in there that go to them.
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From page 122... ...
I have a question for Daniel. The Choosing Wisely initiative is something which I think is really amazing, really visionary, really unprecedented.
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From page 123... ...
We in public reporting, and even in patient engagement, we are often in a situation that really reflects what Barbra Rabson was talking about, and how they have to walk in that narrow corridor in terms of getting patients to be skeptical, helping them understand that all doctors are not spectacular and wonderful human beings, that a large percentage are, but that you do have to be careful. To try to explain the kind of financial pressures that physicians are under is also very terrifying.
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From page 124... ...
I want to make a couple of quick connectors and then make a small offering of some information if you are interested. The first connector is on Choosing Wisely.
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From page 125... ...
DR. WOLFSON: I forgot to mention, and thank you for reminding me, that the employers like Leapfrog are a part of the Choosing Wisely campaign, and the National Business Group on Health and the Pacific Business Group on Health came out with an employer kit that you can find on your website as well that explains for an employer to begin to talk to the employees about this.
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From page 126... ...
The survey that we do is actually a survey of the primary care physician. When we send it out, we have the primary care physicians' name and the first question is our understanding is that you have Dr.
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From page 127... ...
Even though we have quality information and we have cost information, they do not align. For example, how much does this mammogram cost?
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From page 128... ...
And a project that I was involved several years ago, it became very clear that really patient engagement needed to be the overarching frame in which comparative quality cost information is put out there. If you look at the engagement of behavior framework that the Center for 128
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From page 129... ...
Wolfson asking, "Can you comment on the possible impact on the Choosing Wisely campaign on the standard of care and malpractice litigation?
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From page 130... ...
I would like to ask Daniel if he could comment a little bit on -- I was encouraged about the idea that the Choosing Wisely campaign is not just about overuse. It is also about underuse.
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From page 131... ...
PARTICIPANT: National Business Group on Health is a member of the Choosing Wisely campaign.
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From page 132... ...
It is hard to get quality information. I did not even consider getting cost information because I have this great federal insurance plan.
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From page 133... ...
LUNCH KEYNOTE -- HOW AMERICAN HEALTH CARE KILLED MY FATHER Mr. Mark Gorman (Moderator)
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From page 134... ...
What I want to talk about relating to the issue of shared decision making is something very radical in our current context. What my work has been about since my father's death has been looking at health care as an industry.
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From page 135... ...
Real incentives have feedback loops, and I want to come back to that. So, if you want to incent people to use technology, you don't have meaningful use rules because they're rules, they're targets.
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From page 136... ...
And that assumption is that health care costs grow only at the CBO's projections, which are 10 years. And so the balance of Becky's life, health care costs grow at zero.
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From page 137... ...
My son had a ruptured appendix, and he needed an appendectomy, at least according to 99.9 percent of medical literature. He had an emergency appendectomy, and here's the first response from our insurance company: Our medical reviewer has determined we cannot approve your hospital stay for acute appendicitis, we do not have enough facts to show it was medically necessary.
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From page 138... ...
Nothing is being communicated there except thank goodness you have insurance. A lot of people think we can fix this just through payment reform, or by making health care cheaper.
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From page 139... ...
So, Medicare reimburses five times what it did before prospective payment reform. The hospitals claim their costs have grown seven and a half times.
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From page 140... ...
Could there be a dumber idea to take the most expensive thing you can do, ship, and fill a ship with empty space? Well, of course, what the shipping container did was it meant that you could load and unload ships almost instantaneously, within hours.
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From page 141... ...
And what's interesting about that 54 percent is every single health care decision in Singapore is made by a patient. They actually buy it.
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From page 142... ...
And because of that, they built in shared decision making to make sure that people who get the services really want the services. They prep the patient much more up front, and then they prepare them for after the fact, including how to rearrange your furniture for when you come back and what to do with your throw rugs, et cetera.
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From page 143... ...
And I think conceptually there is not much that you've described that someone in this room would say that's not the right idea in terms of a way. But the question is the way to get there, and I want to preface that question by saying historically, the words consumer-driven health care have a bad connotation for the consumers, because that's usually the place like high-deductible health plans, where we just voice the problems that the health insurance companies and the employers and congress have been unable to solve, so let's get them to fix it.
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From page 144... ...
I think you're very close to seeing the end of standard deductible health insurance privately offered outside of the government context. And that will change, that will make a big change.
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From page 145... ...
PARTICIPANT: Not as an argument for status quo, but just in looking for an expansion of the concepts, competition requires more than one provider, and in small-town America and rural America there may not be enough room to make investments for more than one provider group or set of hospitals, et cetera. The current system of course creates that sort of environment, and there is competition emerging in small cities, where you have hospitals that are duplicating capacity to the same area, and then of course getting patients through it that are able to pay for it.
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From page 146... ...
And I actually believe in national health insurance to cover that. Single pool, all of us.
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From page 147... ...
We've been talking about shared decision making here and the difficulties of that. And the other thing is Shelly Greenfield was here yesterday and he did a study a long time 147
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From page 148... ...
MR. GOLDHILL: Oh no, I do believe in consumer health savings accounts.
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From page 149... ...
But behavioral economics, this is something that AARP, as the largest consumer membership organization actually in the universe, is very interested in what Kevin is going to be talking about. We keep trying to figure out what we can learn about what drives people to make health care decisions in health.
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From page 150... ...
We haven't talked about leaders yet. Leaders and drivers of care delivery improvement through informed shared decision making and authorized use of clinical data for research and value improvement.
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From page 151... ...
I went through some different studies we did on shared decision making on payment reform, and I just sort of cherry-picked some of the best sort of practical advice we could give around these topics. So, first, where the public is.
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From page 152... ...
The Choosing Wisely Campaign chose their name wisely. And all of the work we've done in the last couple years, the best phrase we've found to talk about cost is that health care is so expensive it's important we spend every dollar wisely.
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From page 153... ...
First, on shared decision making, I think there are people in this room who know a lot more than me. But when you're talking to patients about this, the top motivation that we've found is getting the best care possible.
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From page 154... ...
So talking about blame, again, a little bit better on the insurance company. But again it was just more sort of neutralizing, saying "Right now insurance companies pay doctors based on how many patients they can squeeze in in a day or how many different procedures." Rewards and incentives fails every single time, 100 percent of the time with the public.
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From page 155... ...
This is how I have spent the last 4 years, working far more than full-time, talking to patients, trying to get good information, the most solid and current information, and bring that to patients. But at the same time, bring that patient experience back to the scientific and medical communities.
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From page 156... ...
People seek patient communities for information, but it is support that holds all that together. People run toward a patient community like this in social media, because what they're being told and what they're reading does not make sense with their experience.
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From page 157... ...
And it just seems like this social media is offering something that just wasn't there before, and boom, people are finding a vehicle to express themselves and earlier presentations of using those stories as data, just connecting back to our previous discussion. So, let me turn to those who were waiting to talk.
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From page 158... ...
So, it's really important. And I also just want to correct that you did select Choosing Wisely.
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From page 159... ...
Obviously you are gathering a lot of patients and their opinions, and you're talking with them a lot about the things that maybe they're not getting in the traditional sense, but they're getting a lot from having the opportunity to complete surveys or just to connect online. And my worry is even in our work where we spend a lot of time doing user evaluations and doing persona-based design and trying to understand what do the users of social media really want to meet the needs that they have -- I'm just wondering if there's anything among your population of patients that you've been working with that you really felt like, I just wish we could do this, and it would make a difference for so many other people with RA to meet an unmet need that they have that social media still is not even meeting.
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From page 160... ...
And the quality of life in patient reported outcome stories is very interesting. But one outcome that I would like particularly the patient communities in the room to start paying more attention to is the notion of burden of treatment.
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From page 161... ...
And I see this as one of the big challenges to implementing recommendations like the Choosing Wisely Initiative. Because in essence, as you've said, there is a heterogeneity of treatment effect, and so, on average, the service may be extremely low-value, but there is going to be some portion of people for whom it may be at least moderately high-value.
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From page 162... ...
So, I have up here with me first Mark Gorman, who is a patient advocate and a cancer survivor. Many of you know him from his leadership role at the National Coalition for Cancer Survivorship.
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From page 163... ...
We heard a whole talk about pricing failures and fraud and abuse cumulatively as driving the problems with health care costs. The kind of patient engagement we've been talking about here can be helpful in the clinical encounter, but we can't solve all these problems there.
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From page 164... ...
Where can we really say to patients, we promise you this, and we're going to deliver it next year to you, and you're going to see the value of what we're talking about. We need to demonstrate that a learning health care system and shared decision making, has real value for the public Lastly, the one thing I worried about, and I think somebody else has mentioned this, that we're spending tens of billions of dollars on health information technology exchange.
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From page 165... ...
Transparency with regard to health care costs is important. And the Time article that came out recently made a huge impression with many of us with regard health care pricing.
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From page 166... ...
So, what I'm seeing regarding patient engagement is coming from the research world at PCORI. We are bringing patients in.
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From page 167... ...
We heard from Gary Langer that more than 80 percent of patients would like to have shared decision making. We know from actually the research that Tresa talked about earlier that my organization asked them to do, we tested the idea of shared decision making in juxtaposition to some other health reforms like payment reform and IT and patient-centered medical home.
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From page 168... ...
People are not really giving informed consent to whatever it is they're being asked to undergo. So I really think that shared decision making is a critical point.
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From page 169... ...
And I would say I think you mean in this context in particular, in this health care system. My sense is that -- and I would love to know what you guys think, my sense is that what David Goldhill was really arguing was that if we open it up, actually forget giving them cost information, just make consumers responsible for burying the cost, the market will restructure itself.
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From page 170... ...
MS. SHERIDAN: Well, maybe this is a bit Pollyanna-ish but going back to patient engagement and having patients guiding change in research -- and the reason that I say this is just the "what if," Peter's "what if." If we did bring in patients at every level of research and solutions and systems and policy making, could we expedite change?
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From page 171... ...
Maybe it has to be the research pathway first to set the stage and provide the evidence for shared decision making, which is how we're going to get ultimately to value. So we're going to wrap up and turn it back to our host Michael McGinnis here.
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From page 172... ...
With respect to care decision strategies, we heard that a meaningful care experience is when someone goes out of their way. We heard "listen first, listen fully." We heard "patient engagement is a skill, not a trait." We heard "connectedness and connectivity count." From one provider, we heard "decision aids save me time." And we heard that "culture eats strategy for lunch every time." We have heard that "real innovation is truly disruptive," and, for us, truly disruptive would be the movement of care choice to the point of the individual.
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From page 173... ...
In the quality and value arena, possibilities include those just mentioned about marshaling information on quality, costs, and value in a more reliable fashion: building the science of transparency. To do that, we are going to have to better marry the processes of gathering cost information with those of gathering quality information, so that we have a more level playing field in sharing information with the public.
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From page 174... ...
1999. Framework for teaching and learning informed shared decision making.
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