Patient Engagement Affinity Group Kick-Off Transcript

Patient Engagement Affinity Group Kick-Off Listen to the Recording Here

Alicia Goroski: Hello and welcome to the CJR Patient Engagement Affinity Group. This is Alicia Goroski and I did just want to announce that we are recording today’s event. We will be posting the recording to CJR connect. And, we'll get started here in just one minute.

As we are waiting for a few folks to join in, I have a couple of announcements. I want to acknowledge that we sent an email out earlier this morning. We understand that if you're trying to join today's WebEx event from a MacBook you may be experiencing difficulties. We reached out to WebEx technical support and try to put together a document that we understand it may not resolve all of the issues. We may have folks who are on the telephone only. We did send the PDF of the slides out. If you did not receive those, they have also been posted to CJR connect. You can always send an email to us at [email protected] and we can get those to you.

We along with our presenters will be trying to make sure that we mention what slide number we are on throughout the event today. We do apologize for that and hope that -- I do see many folks are able to be on the webinar.

I am going to go ahead and we can move to – If you having technical issues, you can again just dial in. If you are listening, you are obviously on the telephone. Again, send us an email if you need the slides or anything else. At this point, I’m going to turn it over to Harold Bailey who is with CMS CJR learning system team to welcome you all.

Harold Bailey: Thank you Alicia. Thank you for joining us on the Patient Engagement Affinity Group Kick-Off Event. We look forward to hearing from you as you exchange promising practices, exciting innovations and lessons learned. The topics will include engaging patients and their families and self-care decision-making through education, the most appropriate care, and in optimizing health prior to surgery. I will now turn over to Alicia.

Alicia Goroski: Thank you. On slide 2, you can see Harold and I joined by my colleague Hilarea Amthauer. We will be your facilitators today and if you move on to the next slide I am want to review today’s agenda. We will start as we are right now with welcome and logistics. Then we have a have a couple of poll questions followed by a presentation, and we are very pleased to have two experts with us today to share and speak with you about shared decision-making. Then, we will have a quick poll question and transition into time for questions and answers. We will wrap up today's event with announcements and reminders.

All telephone lines are muted at this time. We encourage you to share your comments and reactions via chat. For those of you who are on the webinar over to the right hand side of your screen, you should see just below our videos a chat box and you can type in there. If you go on to the next slide, I will give you some further instructions. When you are typing and chatting to everyone, you'll want to select the ‘all participants’ option. That way everyone who is on

today’s webinar will be able to see that. If you are experiencing any technical issues, you can chat to all the panelists and someone from my team will assist you.

Let's take a moment, and I will invite everyone to share in chat now, and tell us your organization and what you hope to learn today, particularly about shared decision-making. While you are typing message in right now I will also introduce you – you’ve already seen, a couple of my colleagues will be monitoring group chat today. You will see Laura Maynard and Isaac Burrows from CMS. He will be chatting with you today. And Lauren Nir will be pushing out polls and other information. One of the other items, while we are waiting for folks to chat in, she did put on closed captioning. There is a link or you can click on the media viewer that is on the upper right-hand corner. You will have to enter your name and organization in order to see the live closed captioning.

I'm starting to see some chat coming in. Jacqueline with Mission Health is interested in hoping to learn what the key elements of success for shared decision-making are. And Andrea from Genesis is hoping to see what others are doing and if it is something different. We encourage you to use group chat. Sally shares she is also looking for perspective on other organizations. Wonderful. Also looking for some best practices out there. Again, we are -- I think you’ll really enjoy and learn a lot from our two presenters and we will have you engage with one another via chat here afterwards. Next I'm going to turn it over to my colleague Hilarea to go over the goals and dates for this affinity group.

Hilarea Amthauer: Thank you. Thanks everyone for joining us on this first webinar and for putting their thoughts into chat.

As you can see on slide 7, we have some specific goals that we have to accomplish through this group. Mostly, we want to make sure that this group is beneficial to you so we welcome feedback and active participation.

Next slide please, slide 8.

You can see the webinar schedule and we look forward to you joining us at the next three events. There is one per month and they will always be on Wednesday from 2:00 the 3:00 Eastern time. We hope that during the event you can share the experience and lessons learned. Now I will turn it back over to Alicia.

Alicia Goroski: Thank you Hilarea. On slide 9, I will go over an introduction to the CJR driver diagram. We did send a welcome email to everyone last week and it did contain this driver diagram. The first page of the diagram is the overall CJR driver diagram and again that is what you are seeing and it is on slide 9 right now. What this affinity group is actually focusing in on is the second driver of optimization of healthcare resources utilization and then the secondary driver of patient and family engagement and adherence to care plan.

On slide 10, we have actually built that particular secondary driver out into a full driver diagram for the purpose of getting this patient affinity group started. I want to mention that this is absolutely a living document. We plan to update this driver diagram throughout this affinity group. We want to hear from you as to what are the other potential secondary drivers that you are working on and we will be again updating this throughout the duration of this affinity group. What you see on slide 10 is the first driver under that patient family engagement and that is engaging patients and their families in self-care and decision-making through education. Today's event is really focused on this particular driver. In particular, the secondary driver or the tactic of using shared decision-making.

Moving on to slide 11, you'll see the second and third drivers for our next two events. We will focus one event on each of these drivers and in our next event; we’re going to be featuring CJR participating hospitals. While we are very excited to have external experts with us today, moving forward you will be hearing from your peers and what we will also be asking for you to step up and share with one another. Again, I just wanted to reiterate this is a living document and if at any point, you have suggestions on what should be added or changed with this, please reach out to us and let us know.

Harold is going to talk about another opportunity that we have which is another opportunity within this affinity group to participate in an action workgroup.

Harold Bailey: Good afternoon once again. The patient engagement action workgroup is a great opportunity to discuss with your peers patient engagement action items that you have identified during the affinity groups. And those action items that you want to actually put into practice. The patient engagement action workgroup will begin May 8 from 2 PM to 3 PM, June 5, June 11 and August 7 all at the same time from 2 PM to 3 PM. As you can see, you can click the registration link to register for this exciting opportunity. We look forward to your engagement and hope that we get as much participation as possible. Thank you.

Hilarea Amthauer: On slide 13, I want to thank Harold for the introduction to the action group. As you can see, we have opened up a poll to gauge your interest in participating in this action group. It will be specific to patient engagement. Please let us know if you're interested; we look forward to working with you if you are. As you can see, there are 15 seconds left. Please vote and we will gauge everyone’s interest.

For those of you on the telephone, the question says, “Will you participate in the action group?” And the answers are yes, no, or maybe. Time is almost up so if you can please answer and we will look at those results as they are coming through. Hopefully we'll have a good group of people who did answer. You should see the results soon. It seems like we have a good mix. Mostly, we have a lot of people who were unable to answer but those who did, we have a good mix of maybe and yes so we look forward to working with those of you who are interested. Next slide please.

Before we move on to the presentation, we want to pose this question to everyone as you listen to our guest speakers. Hopefully at the end of the call, everyone to share their thoughts and answers and on slide 14 you can see the question to consider is “What techniques can I use to increase engagement and activation when I am interacting with CJR patients?” Next slide please.

As we transition and get ready for our presentation, we do have another poll question. This is on slide 15. We will use your answers to this question to plan our June webinar and in that one we hope that we get a lot of people who say yes to this question. And will not be sharing the results with people on this webinar – this is more just to plan our next June webinar. We appreciate everyone answering and I will turn it over to Alicia as we wait for everyone to answer this poll question.

Alicia Goroski: Great, Thank you Hilarea! While we leave that poll open, it is my pleasure to introduce our presenters for today. We have 2 presenters -- the first is Glyn Elywn. He is a tenured professor and physician and researcher at the Dartmouth Institute for Health Policy and Clinical Practice in the United States and at the Scientific Institute for Quality of Healthcare at the Radboud University Nijmegen Medical Center in the Netherlands. He is also a visiting professor at University College in London and retains an honorary chair at Cardiff University in the United Kingdom. He leads an international and interdisciplinary team examining the implementation of shared decision-making into clinical settings. He investigates the design and impact of option grants, patient decision aids, and evidence-based tools to facilitate better clinical conversations. He has developed the observer option and the collaboRATE measures of shared decision-making. He is the lead editor of the book Shared Decision-Making Evidence-Based Patient Choice.

Our second presenter is Dominick Frosch. He is a senior scientist at the Palo Alto Medical Foundation Research Institute and Chief Care Delivery Evaluation Officer at the Palo Alto Medical Foundation. He received his PhD in clinical psychology with an emphasis on behavioral medicine from the San Diego State University, University of California San Diego joint doctoral program. He also completed a fellowship at the Robert Wood Johnson foundation health and society scholar at the University of Pennsylvania. His research has focused on advancing patient engagement and patient centered care for almost 20 years. His methodological expertise includes intervention development, randomized efficacy and effectiveness trials, implementation science, measurement and qualitative methods. He has published over 100 articles, editorials and chapters in the scholarly literature and serves as Deputy Editor for the Journal of General Internal Medicine. It is now my pleasure to turn the phone line over to Dr. Frosch and Dr. Elwyn. Dr. Elwyn, I think you’re up first.

Dr. Glyn Elwyn: Thank you very much Alicia and thank you to the Lewin Group for organizing the webinar. Maybe a little background in addition to what Alicia has told you. As maybe you can hear from the accent that I am from the United Kingdom initially from Wales and I was a family doctor there. I've been in the United States for the last five years. I would like to introduce you to Dr. Frosch to say a few words to add to his introduction from Alicia.

Dr. Dominick Frosch: Thank you very much Glyn and thank you all for being on the webinar today. We are delighted to have this opportunity to present to you. And as Glyn noted we have had a long-standing interest in shared decision-making and have done a lot of collaborative work around that and very much appreciate the opportunity to talk to you about the opportunity to talk to you about how you may be able to build on our work in your own clinical work at the front line. Our ultimate objective is to try to help figure out how you can do these things in your routine practice every day with patients. We are delighted to be with you and thanks again for having us.

Dr. Glyn Elwyn: Let me ask you to move on to slide 17. I need to declare some competing financial interests. This might be a sign for being around for too long maybe, but I have worked for many organizations such as producers of patient decision aids including ME solutions on health wise. My current competing interest you have heard mention of Option Grids. There has been a development here. These previously were freely available tools that in the future will be linked to a company called EBSCO Health which some of you may know Dynamed Plus, which is a provider of evidence based guidelines to the medical and professional community. These tools will be more updated than they were in the past and more widely available. That is my competing interesting.

I understand Dr. Frosch that you have no competing interests to declare, is that right?

Dr. Dominick Frosch: None anymore, Glyn, thank you. But also some historical, in particular with the Foundation for Informed Decision Making. But none current or in the last five factors.

Dry. Glyn Elwyn: Let me move on to slide 18. Just an overview of the goals and I will not dwell on these but we want to explain in our view what this idea of shared decision-making is and how it might differ from some other ideas of patient education or case management. Particularly interested in how it might be incorporated into routine work care and how you might know -- as someone mentioned what success will look like -- how would we know that patients has experienced shared decision-making and what will be the likely outcomes of doing this process? Then, the importance I think of what kind of patient reported outcomes would we want to collect -- data collection is always a burden but how could we do this efficiently and what will be important to report? Next slide please.

Many people have heard of this term but I began to use it in my PhD about 20 years ago and at that time it was pretty new. Many people have put this into policy documents and CMS has launched an interesting project about the use of patient decision aids to facilitate shared decision-making. Let’s move onto slide 20.

At its simplest, it is this: helping a person develop an informed preference. This could apply to any decision really -- where to live, how to buy a house, where to go on holiday. You probably don't make choices without knowing something about your choices. Traditionally in medicine, there has been a lot of recommendations. You have this diagnosis, this is what we do. There

has been very little in terms of comparing alternatives. And this is changing. Society is changing, people’s expectations are changing. People want to compare alternatives.

Let's go to slide 21. This is a more academic definition. Making decisions together and this critical line of using the best available evidence about the likely benefits and harms. It sounds pretty easy but there has been some interesting empirical work recently showing that clinicians mostly over estimate benefits and underestimate harms. It is just part of the way we have been brought up and educated. We do not have good information about the harm risks usually.

Let us move on to slide 22. It is not about providing patients with education -- however good your educational materials are, many people have good leaflets describing procedures and what kind of things might happen in the future if you do this procedure. It is more than that. If you give people a patient information leaflet that you got in the clinic already that may not be shared decision-making. We know people actually misunderstand this sometimes. It is not case management by handing off the care to someone else or part of the team, it is not about that. Although making sure that people in the team are really on the same page when it comes to what options shall we describe and how should we describe them is incredibly important. It is not any of these two things.

Let me move on to this transitional slide 23. How do we do this? What is involved? I have been responsible and Dr. Frosch has worked with me on this three talk model of shared decision- making.

Let me move onto the next slide, 25.

If you asked patients, “What do you want, do you want treatment A or treatment B?” The most likely reaction will be, “I'm not sure. You are the expert. Please tell me what to do.” They will become unsure, anxious, and worried that either you do not know what you are doing or don't know what the right thing is for them. Or they will feel abandoned and feel like they have to make the decision on their own.

The first important step in my view of shared decision-making is to make sure the patient understands that although we might be presenting them with options, we will actually support them to make the decision and in a collaborative way. So team talk is the first step. “We're going to discuss some choices today but don’t worry, I’m going to help you and your family and whoever is involved to make the best decision.” Let's then talk about options and here we are comparing alternatives.

As you can imagine, before you can compare alternatives, you need very good information in a way that patients can understand the comparisons, the trade-offs, the harms, versus the possible benefits. People usually like some data here, some numbers, how likely is something to happen versus not happen. Then this journey of moving from an initial preference – “well I

thought I was going to have this procedure today?” Well, maybe but there may be alternatives and let's talk about them.

This idea of the psychologist called ‘preference construction’ of building up someone’s understanding until they are able to make an informed decision. And then supporting their decision and recognizing that this process may take more than one conversation, because as you will know yourselves when you are facing a tough decision, you want to talk it through with other people to think about it.

This is called the three talk model of shared decision-making I will hand it over to Dr. Frosch now about why we do this.

Dr. Dominick Frosch: Thank you very much Dr. Elwyn for giving us that orientation and overview of how we engage patients in shared decision-making. You may be wondering why we should be doing this. First, there are a number of benefits to engaging the patients in shared decision-making. We will move onto slide 27 now.

Shared decision-making has been investigated now for well over 20 years and there is quite a large body of evidence that has accumulated and we have a pretty good idea of what the benefits of shared decision-making are. It produces better outcomes in many respects. We have more satisfied patients, we have patients that are better informed than those who are not engaged in a process of shared decision-making. We have patients who have better adherence following a process of more decision-making and are more likely to follow through on all elements of the treatment plan because they have been part of the process of making that choice. We also see better decision quality. Decision quality is perhaps a concept that is a little foreign. What this really is about is the choice that is made, the decision that is made in the clinical context that reflects what best fits with the preferences that the patient has articulated together with their clinicians.

We also had evidence of lower costs following your decision-making and in part, this is because often time’s patients tend to lean towards more conservative options. It really depends on the particular clinical context. We also find -- there is less evidence about this -- but there are fewer complaints from patients about their care when they are engaged in this process and related to that, we see less litigation. Though again, this is still an early area of research, not that much has been done but what we see so far is actually quite promising.

Let's move on to the next slide, 28.

This is perhaps also the heart of why shared decision-making is important in what the benefits of it or. Beyond all of the evidence of what we just reviewed, shared decision-making is really the way in which we can fulfill this call to both combine what we know from evidence-based medicine and the various options available and what we also know from evidence-based medicine is that oftentimes the evidence fails to identify a clearly superior option. And at the same time we want to be sure that in those cases that we are attending to what the patient's

preferences are and that the choice that we make is one that reflects both the evidence and the patient's preference. That is where shared decision-making really fits in.

Let's move on to slide 29. Patient decision aids are actually perhaps the area in shared decision-making that has accumulated the largest amount of evidence. Patient decision aids are tools that we can use in the process of engaging the patient in shared decision-making. When Dr. Elwyn talked about the three talk model of shared decision-making that we developed a few years ago, he noted that you want to be engaging the patient and understanding what their options are, what are both the benefits and the harms of each available option. The decision aids are tools that can really help us do that. They can come in a variety of forms, which can be something as simple as the option grids that he alluded to at the beginning of the conversation we're having today. That [option grids] may be just a one piece of paper, one sheet that gives an overview of what the benefits are, what the risks are and other questions that patients may have about different options. Those kinds of tools are not intended to provide comprehensively all of the information, but really to provide an overview and stimulate a better conversation between the clinician and the patient. There are other kinds of tools available that are hosted on the web that may be more comprehensive and are intended for the patient to use on their own before coming into a consultation. There, of course, we do need to tend to some of the ways in which will structure those workflows to make it work. But the real important point here is there are a variety of different formats the patient decision aids can take and there are a variety of different formats that patient decision aids can take. There are different ways you can incorporate those into your workflow, either relying on patients to review them by themselves or to really stimulate a conversation between a clinician and a patient. What these tools do is compare the reasonable options of those which evidence identifies as those that are relevant to the particular clinical problem at hand, they provide accurate risk information, and most importantly, they are designed for patients to understand. The language that is used in decision aids is tailored specifically so that everyone can understand what these options might mean. The numbers are presented in a way that do not mislead patients in misunderstanding what the risks and benefits might be.

Let’s move onto slide number 30. This is again where probably the largest evidence of knowledge has accumulated, and we can divide that into those areas where we know there is quite strong evidence and those where the evidence is there, but still weaker because there were not quite as many studies that actually support these conclusions yet, in large part because they haven’t been studied that much. But on the strong evidence side, we see that patient decision aids are very valuable in increasing patients’ knowledge of what the risks are, understanding the risks and benefits, and importantly having accurate risk perceptions. Not overestimating risk but also not underestimating risks. And it helps patients develop more preference-congruent decisions so that the choices that are made really reflect of what that preferences of that individual patient are.

When the evidence is weaker, but nevertheless also present, is that engaging patients with these tools can reduce the cost of care, improve the adherence for patients, and improve

communication. Again, these are areas that may not have conflicting evidence, but we just don’t have as much of it yet, so therefore we refer to these as the weaker areas of evidence.

Let's move on to slide 31. This is really just a reference for people who want to dive a little bit deeper into this, but a Cochrane review on decision aids has been conducted for almost 20 years now. In the most recent update that was published, this year now includes 105 randomized controlled trials. And those of you familiar with systematic reviews will know that that is a substantial body of evidence. We really can get close to a point now where we can declare a class effect of these tools -- even though there are still some areas that could benefit from further investigation.

Now let’s move on to the next slide, 32.

Before we move back to talking about how you would do this specifically in the area of joint replacement, we want to touch on some other things that are important to be aware about in terms of how patients perceive the process of shared decision-making.

First, consider this. A common sentiment about shared decision-making that we hear from clinicians when we work with them, train with them about decision-making, talk to them about how they do it -- they often will say we already do shared decision-making all the time.

But, let's move onto the next slide, 33.

There's a bit of a reality check in order here. A few years ago, we conducted a study where we talked to patients and tried to understand more about their experiences participating in the decision-making process with their clinicians. These patients were 40 years old or older. They were predominantly Caucasian, they were highly educated for the most part, and also had high income. These were patients recruited in Palo Alto, which is a fairly wealthy community here in Northern California and the demographics of the participants reflected that.

What we learned from these patients really surprised us. They expressed a fear that if they were asked many questions of their clinician or even go so far and disagree with the clinical recommendation from their physician, that they worry that they would then become labeled difficult. And if they were labeled difficult, they might receive lower quality care in the future.

And some of you may be familiar with the sitcom Seinfeld, and you may recall that there was an episode many years ago in which Elaine turned into the difficult patient. If you go back and look at the episode, what you’ll find is that Elaine never was able to receive the care that she was seeking in that episode because she was ‘difficult.’

Now let's move back to our study on the next slide. (34)

I want to read to you here a quote that really encapsulates that fear. This is directly from our study. This is a 64-year-old male that said, “If I were to do that [and what he was referring to

here is degree with a recommendation from his physician], I would think… is the guy going to be pissed at me for not doing what he wanted? …is it going to come out in some other way that’s going to lower the quality of my treatment? …Will he do what I want but resent it, and be detrimental to my quality of care?”

Now the key point here is that patients feel uniquely vulnerable at the moment when they are seeking care for a problem they have. So if we want to engage them in the shared decision- making process, and we want to do that in an authentic way that really enables them to have their preferences reflected in the care that they are going to receive from you, we need to make sure that they understand that we want to know what they think. That if something doesn't make sense to them or doesn't align with what their preferences are, we want to hear about that. Because otherwise we cannot overcome this vulnerability. We may believe that patients got what they wanted, but they may not have ever told us that we haven’t explicitly invited them to be open with us and really explain from their perspective what they think is best. It also offers up opportunities to potentially correct some misunderstandings. Here again, an important component is to really engage the patient, and make them feel comfortable to be open about makes sense to them.

So with that, let me move on to the next slide. And Glyn will talk a bit more about how we do this specifically when we are working with patients with joint replacement. Glyn, back to you.

Dr. Glyn Elwyn: Thank you, Dominick. Let’s go to slide 35.

The point here, and this is just one study, and I have been doing a bit of searching around and I found another paper by Weinstein actually in the Journal of Bone and Joint -- in the last decade in America, the number of total knee replacements has actually doubled. And it's interesting – it’s doubled and also younger people with less pathology anyway on the x-rays seem to be having knee operations. So something quite interesting is going on here. And this is a study from United States and Canada I think. The overall message is more joint replacement in younger people with less functional loss.

So maybe, just maybe there is an opportunity here to think about, is this possibly over treatment or possibly over diagnosis? And what role does shared decision-making play this kind of situation?

Let me move to slide 37. One of the prime researchers in these areas called Gillian Hawker; she has many publications in this area. In this paper, she is making the point that people's beliefs, expectations, and preference mattered tremendously as they are facing this particular decision. And in other words, it is very much open to either a recommendation by an authoritative clinician. Unless the patient’s position is voiced, as Dominick was suggesting, there's a very high chance that a strong recommendation from an orthopedic surgeon or somebody else who says, “Oh yes, a new knee might be right for you…” that might be overwriting the patient's concern, beliefs, or their worries about is that the best thing for me. So what would happen perhaps in shared decision-making were to occur?

Let’s go to slide 38. There are a few trials. Kevin Bozik I think in UCFS made a trial – you can find it B-O-Z-I-K with Jeff Belkora and UCFS – kind of had a very interesting take. They ran a trial of decision aids in orthopedic surgery, with the knee actually, and found that the surgeons were very much more satisfied with their consultation process. Those people who read the decision aid kind of elected quite early, “Well I don't even need the conversation.” And so it made the conversion rate, if you like – the people who stayed and wanted to have the conversation with the orthopedic surgeon – even more efficient. Patients asked much better questions about the risks. So there's something interesting about dealing with only those people who when better informed want to go for further elective surgery.

So there’s a possibility here. And I would say that even though we have had 105 trials, as Dominick was saying, this area of what would happen in elective orthopedic surgery if you used a very good decision aid is actually understudied. There's more room for work here. Don Stacy, who we mentioned has done the systematic review, has got two pilot trials published. I think they are underpowered, so there’s room for more work here.

Why is this the case? Why would using the decision aid lead to perhaps less surgery here? I think the main reason is that people typically fail to anticipate the recovery time. It takes a few months with active rehabilitation and physiotherapy to get back to function. And people often think there will be no residue pain and they will be back to their old self. And that's not usually the case. There’s percentage, quite a significant percentage – somewhere around 15 or 20% - who still have residual pain and actually don't go back to function. And if you think that this operation is happening in younger and younger ages, that is more likely to be the case I would argue.

So the message: we know already that using shared decision-making and patient decision aids will lead to more informed decision-making. And this is likely to lead to less operations in areas of high utilization.

Go to the next slide. (39)

Going back to the driver diagram again. So, Dominick had mentioned workflow a few times. So scaling up to the clinician workflow is one massive task because doing this well as we’ve indicated needs skills, changing attitudes, and also access to good information. So how would you measure that? You need to invest in those skills and tools and then what would be the process measures?

We’ve listed a few here. Perhaps the percentage of patients who actually get the tools. GroupHealth and Kaiser I think are beginning to measure this as a default. They expect that 70% of patients facing the surgery would have a decision aid before they see the orthopedic surgeon for instance, or whatever threshold you set. And then there's a measure of, ‘did this patient experience being told about options being respected by their preferences.’ So, we will come back to that in a moment.

These are some of the process measures and then on the outcome side, what are the actual decisions made? Do we see less people electing to have intensive intervention (surgery) versus moving towards medication and maybe joint injection or some other physiotherapy for instance, i.e. less elective procedures? Those are the kinds of things that you would measure as an outcome measure.

And what would be the ultimate success? The ultimate success I think would be knowing that patients are well-informed, and have made the decisions that align with their preferences. But also some of these other issues around costs, experience and decisions made.

We are also suggesting actually that if the team is really well aligned and taught well to do decision-making, that there may be other cultural benefits. Doing this work well is actually doing medicine well. This is the ultimate of why we train. To really involve patients in making the best possible decisions. So we anticipate there will be less burnout and higher staff morale if this was the culture of the organization. But that’s a bit of speculation at this point. So I am going to go back to Dominick about how you would add this into your workflow perhaps.

Dr. Dominick Frosch: All right, thank you so much Glyn and we're just about ready to wrap this up but we have a few more points we want to make.

On slide 40 now. So, how would you incorporate this into elective orthopedic procedures? So first, introduce the options to patients early, using decision-support tools such as option grids or other measures. And that is after you have declared that you are working together as a collaborative team.

Now an important point not mentioned on this slide here is that all of you as part of CJR are also collecting patient reported outcomes. Hopefully you are doing that also before the procedure is done. And you can use these kinds of tools also to gauge both how the patient could improve relative to other patients who you have treated, or you could refer to published literature. But it gives a way of really understanding where is this patient’s baseline, and based on that, based on other data that we either have from our own health system that we have been collecting, or from published data, what of improvement can we expect if we were to do this surgery? Are you really at a point now where the benefits on the surgery is really worth it for you?

You also want to assess your team and clinicians’ attitudes and skills to engage the patients in shared decision-making. And use tools to engage the patient in learning about what their options are. You want to measure what is happening, you want to provide feedback, you want to monitor. And you want to evaluate the options that are offered versus the decisions that are made, as Glyn alluded to. And ultimately measure the patient experience of shared decision-making, and also continue longitudinally to measure patient reported outcomes. This will give you your own data that you can refer to and that you can engage patients in that shared decision-making process.

So let's go to the last slide – slide 41. What can a health system do? And one of the key issues as you gear up and engage the clinician teams in engaging the patient in shared decision- making, is to have an efficient way to measure that. As Glyn has noted, he developed this measure called collaboRATE. And collaboRATE has two really important features. One, it is only three items. It is very short so the responding burden is quite low. And it's relatively easy to deploy in that regard. Most importantly, these three questions really get at the heart of the matter, and help you understand once you use this measure to get feedback on your processes, where there may be room for improvement.

(1) How much effort was made to help you understand your health issues? That is, have you explained the options well? Do patients really know what the risks and benefits are of all the options available? (2) How much effort was made to listen to the things that matter most to you about your health issues? That is really engaging the patient in developing their preferences for this particular problem. And then finally, (3) How much effort was made to include what matters most to you in choosing what to do next. Do we have congruence between the patient's preferences, and the decision that is ultimately made?

So we would strongly encourage you to leverage this tool. It is already being leveraged in a variety of health systems around the country. The VA is using collaboRATE in several clinical contexts. My own organization – the Palo Alto Medical Foundation uses collaboRATE for all of our patients who are either considering hip or knee replacement and we also use it in some other initiatives such as the Million Hearts initiative that CMS is also sponsoring.

So with that, let us close, thank you very much for your attention, and we would be delighted to take any questions you might have.

Alicia Goroski: All right. Thank you very much Dr. Frosch and Dr. Elwyn. That was extremely informative and we do have a lot of questions that have come in.

So, while we do that, on slide 42, we want to hear from you. Continue sending the questions in, but also let us know how you are incorporating shared decision-making into your CJR implication. And what we will do, we will move on and we actually are going to push another poll. Let me give the presenters a moment to catch their breath. And while we leave that poll open though, I will go ahead and pose the first question to our presenters.

First the poll question is, “What tools and resources does your hospital use to engage patients and their families in self-care and decision-making?”

This one should be set up – it looks like you are going to maybe just have to select one. So you may have to pick the top one – but let us know if there are others in your chat. And while we leave the poll open, I will go ahead and pose the first question.

So we had some great questions come in. I am actually going to pose this – I think Lori Stark you just sent this one in, this is again to Dr. Elywn and Dr. Frosch – How would you suggest addressing providers who believe shared decision-making is more of a consent process?

Dr. Glyn Elwyn: Dominick, you have been dealing with this as a chief delivery officer there, you’re closer to maybe some of the workforce than I am at the moment. Do you have anything on this?

Dr. Dominick Frosch: So, I think let's be clear about one thing. When we are talking about consent, a decision has already been made. But there has been a fair bit of work in the last couple of years on some really important conceptual thinking that perhaps what we should be doing is replacing our traditional informed consent process. Which admittedly in healthcare is rarely much of a process the way it was envisioned. When people think about informed consent not as a single moment event, but as a process of really helping somebody understand. I think more often than not in routine practice it goes, “Well I told you everything – here’s a document I need you to sign.” The point is the decision has already been made. Shared decision-making is a much better way of actually accomplishing informed consent because it is a way in which we can engage patients to really understand what those choices mean so that when a signature goes onto a document for legal purposes, that actually reflects an authentic process behind it that has happened.

Dr. Glyn Elwyn: I would like to echo that. Consent at the moment typically happens in the morning before procedure, right? A few hours before. And as Dominick says, the decision was made weeks ahead of that or days at least. And so we wonder whether this approach means that often there may be a very well considered decision and you’re just getting signed off on it. But we suggest that this process of sharing decisions goes back to the outpatient where you’re considering, shall we do something here which needs an eventual signature? And if so, how are we going to compare those possible options?

So maybe even a two-part consent process. One which is about the consideration of the alternatives, what are possible? And then say, “Yes I understand now what I’m facing and I choose procedure B.” And eventually we get to the theater, say I'm happy to sign part two here which is a consent to go ahead and have the antiseptic and the operation. So I think Dominick is right. We need to make this much more longitudinal and much more of a process at the beginning of this decision journey.

Alicia Goroski: Great, thank you so much for that. So the next question – we actually had a couple of different questions. So I’m going to try to combine the two questions. But they were asking about if you can talk a little bit more about how does shared decision-making differ or are there – can you talk a little bit about what is appropriate and an effective timeline in various settings, particularly small rural settings, and potentially medically underserved areas. The patient populations who may not have the similar physical electronic transportation resources that others do.

Dr. Glyn Elwyn: Right. So this is a very important issue. And I think it's one that the research is really struggling and also actively working on. I am part of a study at the moment dealing with breast cancer options, for example. And we're trying to work in the Bronx in New York, and in very underserved areas with people from different languages and very different social strata. So health literacy is likely to be very low, language barriers exist, and they’re uninsured. So how would you do shared decision making in that situation?

And we are experimenting with – Dominick mentioned these one-page tools – we’re actually taking that a stage further to make some visuals, use pictures, if we had the resources I would like to play with short YouTube video components that you might be able to play on the tablet or your phone. Because even in the lower economic strata, most people now depend on a smart phone of some sort to navigate the world. So I think we have the opportunities and the technology to make these kind of tools very accessible, either on paper, or on short videos, or by using diagrams. The research hasn't really finished in that area yet, but I think it's a matter of goodwill and resources to make these options easy to understand and the numbers easy to grasp. I do not agree that these concepts are too difficult for any walk of life to understand. People always understand choices and they have to make choices in their own life every day. And it’s no different in healthcare. Although those kind of choices are a little bit more unfamiliar to them – an even more reason why we need to explain using good methods, I think.

Dr. Dominick Frosch: And what I might add to that, as I agree with everything that Glyn has said just to come back to the point also about workflow will probably be different in say, rural settings that are less resourced or where patients have less access to electronic tools or aren’t accustomed to doing that kind of research themselves. So I think it's important to recognize that depending on where the health system is located, what kind of patients it serves, that the workflow may be somewhat different – that I think is the first step. But also to add to Glyn's points, there is some research that clearly shows that actually it is those who come from more disadvantaged backgrounds or lower education backgrounds actually have even more potential for benefit and room to gain through engaging them in a shared decision making process. And just to touch back on a point that I touched on earlier, if we find that well-to-do patients from highly educated backgrounds in Palo Alto California are expressing fears about articulating their preferences in a consultation with the clinician, then you have to expect that for those who come from less advantaged backgrounds, that fear is going to be just as much there if not more. So again it really raises the importance of ensuring that we create a level playing field at the beginning of the consultation, and that we let the patient know in terms that they can understand that we really do need to hear what is important to them.

Alicia Goroski: Great, thank you. So I am cognizant that we have five minutes left. I am going to – I’ll just say that we have a handful of questions that we will not have time to get to. Our presenters have agreed to provide some answers after the call. So we will document those and send those out to everyone who participated and put those on the CJR Connect site. The one final question – and I will prioritize this one because this may kind of help people take action, is there a sample of your template or framework that surgeons could use to guide

these discussions and decisions with the patient? Is or some sort of tool out there that is publicly available that the hospitals can potentially share?

Dr. Dominick Frosch: We are in danger here of self-promoting I think. One of the tools that we are finding that we been have cited a few times, and you can check that, this three-talk model has been really well received by most professionals. It reminds clinicians, if you like, that the first step is to make a team. You just can’t expect people to take on this responsibility without support. So making sure that people feel supported in addressing the options. And then, secondly, being very clear about some information; that the whole team agrees. Because one of the major problems here is that one doctor might say one thing, contradicted then by a nurse or a PA later down in the workflow. So getting the team on board with using the same information about the options that you’re prepared to share, and then kind of trying to respect that patient’s preferences. This three-stage talk mostly changes the attitudes of the team as well as the clinician trying to do this. And without embedding this in the team culture, most organizations will fail I think to use the tool to connect in a creative and effective way.

Alicia Goroski: All right. Thank you very much. So let's go ahead and move on to the next slide. We're going to go ahead and wrap this up.

And moving on then to slide 46.

We wanted to let everyone know, if you have a CJR Connect account and you had pre- registered for today's webinar, you have been added to your own private group on CJR connect. It is called the patient engagement affinity group. So this slide does give you information on how to comment or share a resource. We would like to challenge everyone to log on and this slide, also – and I think Laura Maynard can post the link to request a CJR Connect account if you do not have one. She can post that in the chat as well. So if you are on CJR Connect, we would like for you to log on in the next couple of days, and share – post a chatter post in that private group. That is where we will be posting all materials for this webinar and upcoming webinars. And we really hope that that will be a space where you can communicate and share what you're working on with each other. So just wanted to make that announcement.

On slide 47, we do just have the remaining patient engagement affinity group webinars with the registration links. If you have not already registered, you can go ahead and register for those at this time. And then we will move on to the final slide.

Slide 48. And this also just has some reminders of upcoming patient engagement action work groups. I think by my count there were about 25 folks who responded to that poll that you are interested in taking action. So if you have not already responded, sign up before May 7th and you will receive an invite with a dial-in number. So also I will remind, before I turn it over to Harold for closing comments, just take a few moments to complete the post event survey. It should automatically pop up, but you may need to disable your pop-up blockers.

So I will now turn it over to Harold for some final closing comments. Harold, I think you may be on mute.

Harold Bailey: Thank you all for attending. What a phenomenal presentation given by Dr. Elwyn and Dr. Frosch. We look forward to our action groups, our action workgroups which will begin on May 8 and will go with a session on June 5, July 10, and August 7. They will take place from 2 until 3 PM Eastern Daylight Time. Once again, thank you for your participation. We know you’re extremely busy, this is really important stuff. Everyone wants to take care of a patient and hope and invest in their path to recovery when it comes to their health. Thank you again.

Alicia Goroski: Thank you everyone, have a great rest of the day and thank you to Dr. Frosch and Dr. Elwyn.

[Event concluded]