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Two Decades of Shared Decision Making in Mental He ...
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Hello and welcome. I'm Dr. Amy Cohen, a clinical psychologist and director of SMI Advisor. I'm pleased that you're joining us today for today's SMI Advisor webinar, two decades of shared decision-making in mental health, achievements, challenges, and the path forward. Next slide. SMI Advisor, also known as the Clinical Support System for Serious Mental Illness is an APA and SAMHSA initiative devoted to helping clinicians implement evidence-based care for those living with serious mental illness. Working with experts across the SMI clinician community, our interdisciplinary effort has been designed to help you get the help you need to care for your patients. Next slide. SMI Advisor knows that today's topic applies to all the disciplines that care for those with SMI. For that reason, today we are offering one AMA PRA Category 1 credit for physicians, one CE credit for psychologists, one CE credit for social workers, one nursing continuing professional development contact hour, and one continuing pharmacy education hour. Credit for participating in today's webinar will be available until January 29th, 2024. Next slide. Slides from the presentation today are available to download in the webinar chat. Select the link to view. Next slide. Captioning for today's presentation is available. Click show captions at the bottom of your screen to enable. Click the arrow and select view full transcript to open captions in a side window. Next slide. One back, sorry. Please feel free to submit your questions throughout the presentation by typing them into the question area found in the lower portion of your control panel. We'll reserve about 10 minutes at the end of today for Q&A. Next slide. Now I'd love to introduce to you the faculty for today's webinar, Dr. Yara Zisman-Illani. Dr. Zisman-Illani is an assistant professor in the Department of Social and Behavioral Sciences at the College of Public Health, Temple University. She has a longstanding experience developing shared decision-making interventions, tools, and measures for individuals with various mental health conditions in diverse settings, including psychiatric services, community mental health programs, primary care, and inpatient services. Dr. Zisman-Illani, thank you for leading today's webinar. Thank you so much, Dr. Cohen, and thank you all for having me here. I'm very excited and honored to be here. Before I begin, I just want to thank again for Dr. Cohen, and also to Dr. Ben-Drews, and to Maggie Coyle. I also would like to thank the planners of this webinar, Dr. Terry Brister, Dr. Cohen as well, Dr. John Torres, Shareen Khan, Dr. Donna Rowling, and Dr. Megan Aratt. And thank you so much for bringing this important topic of shared decision-making in mental health into this main stage. So I don't have any disclosure to disclose, no conflict of interest with the subject matter. And today's learning objective will be to apply the principle of every time you see SDM, it means shared decision-making. So to apply the principle of shared decision-making in mental health and in psychiatry, to analyze the challenges and opportunities of SDM, shared decision-making in psychiatry, and utilize the strategies for enhancing shared decision-making in mental health and in psychiatric practice. My talk today will be composed of four sections. First of all, it's gonna be an introductory talk for the topic of shared decision-making in mental health. So I will start by explaining, talking about what is shared decision-making. I will do a quick contextual historical factors, and then I'm going to dedicate the operation of my talk to shared decision-making in mental health, challenges and opportunity. So let's begin. So first of all, what is shared decision-making? So shared decision-making SDM is an ethical imperative, and this is the right thing to do. And again, I'm thankful for the opportunity to present this topic here. Nothing about me should be done without me. Nothing about us, no decision about us should be taken without our involvement. And if we think about shared decision-making, if we go back to, I guess, a few years back, and we think about the traditional job or role of a doctor, and the doctors back many years ago, probably about 100 years ago, did not have a lot to offer in terms of science and medicine and treatment, but they use compassion. They use caring during their appointment. And we are very lucky to have advances in medical science and improvement in technology and in medicine and treatments. But sometimes because of all of those technological and science development and advantages, and considering the very short time for appointments, we kind of, a lot of time doctors provide or distance themselves from the humanistic interaction. And this is what, in my view, shared decision-making is aiming to do, is actually my definition to shared decision-making is when the interpersonal interaction meets medical necessity. And the definition that I love to use for shared decision-making in general and in mental health is that it is a health communication approach focusing on collaborating patient-clinician interaction around treatment or treatment-related decision to achieve better person-centered care. And again, the goal of shared decision-making is promoting person-centered care, holistic care. And we are now lucky to be in a situation that shared decision-making has become an evidence-based health communication. Research show us that when we apply shared decision-making, we can improve interpersonal communication within a very stressed time of an appointment. Studies show increasing trust of the person with the lived experience in the provider advice and in the provider, better knowledge about the health condition and the option, the treatment option, improvement in self-efficacy. We also noticed that shared decision-making can promote health outcome. We see this in condition like diabetes, cancer, heart disease, and many more, and of course in mental illnesses. And as an evidence for the great promise of shared decision-making, we see leading institutes like the UK NICE and the ARC and the American Psychiatric Association and SAMHSA, of course, and the American Psychological Association. All of those institutions and others actually adopted shared decision-making as a recommended clinical practice. So you're probably asking, why do we need to be here and talk about shared decision-making in mental health if it's so promising and many organizations and institutions adopt it? So the thing is that we still have limited knowledge of shared decision-making. And when I say we, it's all stakeholders. I'm referring to the providers. I'm referring to the people with the lived experience. I'm referring to family members that often involve in decision, policy makers. We don't really understand, or some of us are not familiar with shared decision-making and those of us who heard about the concept, we don't really understand what is the concept and how to practice that. And that's, of course, impact the ability to implement and use shared decision-making in mental health care. And because we don't use shared decision-making as much as we can use, so it obviously affects person-centered care. It's reduced engagement with treatments and services and affect indirectly health outcomes and recovery. Now, what are the principles of shared decision-making? So there are six principles that include in the package of shared decision-making. First of all, any shared decision-making process aimed to eliminate the power asymmetries between a clinician and a person with lived experience. Now, if we think about it, in every appointment with a social worker and a client, with a psychiatrist and a client, there is, by nature, there are power asymmetries. One is a doctor or a professional provider. One is a person with lived experience, something who doesn't feel good. And as long as we're not balancing those asymmetries, we won't be able to have an open discussion. If we think about it, if we have an open discussion with a friend, usually we don't feel that this friend is above us, right? But if we feel that our provider is above us, we can't really, it's hard to trust them and it's hard to really have an open discussion. The other principle is the acknowledging that there are at least two experts. What do I mean by that? Obviously, there is the provider, who can be a nurse, social worker, psychologist, right, a psychiatrist, but there is also a person with a lived experience. And this person may live with their condition for months, for years. So they are definitely expert. Sometimes they're a family member or other significant others, right? Sometimes we have three experts in the room or four experts in the room, and we have to consider that. Another principle that sometimes we don't often think about is really how much it is important to understand what the patient or the person with the lived experience, what are their preferences for involvement in decision-making. Many people actually want their provider to take the decision for them. This is totally fine. That can be shared decision-making as long as the provider understand that this is the preference. So we have to make sure, sometimes I hear that we are treating people in a shared decision-making approach. But if we think about it, we cannot force people doing shared decision-making. This is against the philosophy and principle of shared decision-making. So it's really important to know what is the preference of the individual with lived experience for their involvement. We also have to have at least two treatment options. And if we think about it, even if there is, I mean, only one medicine that help, which always there's more, but even if there is one, the provider should always say that there's always option of not taking this medication. So there's always have to be at least two option to discuss. And then the fifth principle is the decision that will be made have to align with the goals and the preferences and the values of the person with the lived experience. And there must be a discussion about the risk. Often, especially in psychiatric setting, we don't talk a lot about the risk that related to, for example, taking medication and stopping medication. There's not a lot of this discussion. And finally, the sixth principle, which is a little bit tricky, is accepting that the person with lived experience may have a choice of a treatment plan that may differ from the one of their clinician. Now, a little bit about how shared decision-making was developed. What are the contextual and historical factors in the development of shared decision-making in general? And I promise I will do it very, very briefly. So up until the 1980s, the most common communication style in appointment in medical setting was the paternalistic style, right? And this curricular kind of show an example of something like that. Providers make most of the decision and refer to the person with the lived experience as a subject. Now, few things happen around the 80s in three level, generally speaking. So first of all, there was a lot of progress in terms of ethics and policy. Development report was published in 1979. This is a guideline about principle for protection of human subject in research. But this very important report emphasized how person should be treated by respecting their decision. There were also a lot of sociological and political movements of consumer rights, like my choice, my body, my rights. And importantly, there was also good development in medicine and science. Condition that were acute up until the 70s, the 80s, become more chronic. And when it is, I personally think, and this is sharing me my preference, if I would ever rush to the hospital in an emergency situation, for example, having a heart attack, I don't want the provider to start doing shared decision-making with me in this urgent emergent situation. I would like them just to be very paternalistic, determine, make the decision and follow the protocols, right? And I do think that shared decision-making may not be appropriate for emergency situation, for acute situation. However, we are lucky today that most of the health condition are chronic condition, right? And we have time, we have enough time to make shared decision-making. In the 90s, we see the surge of the intranet and people with lived experience logged into the intranet, although not all the information is accurate, but they were able to get more information, become more prepared to appointment. Remember the asymmetry in power? So this is the first principle, right? That we're more balanced. And also we've seen a lot of lawsuits during the 90s against provider because people who do things also do mistakes. And because most of the health decision were made by providers, there were a lot of mistakes and a lot of lawsuits, which led into basically a different type of communication. If provider before that, most of them were more paternalistic, now they started to become involved in an informed decision-making, informed communication style, meaning provider become just shared all of the information about the treatment option, the diagnosis, the lab result, all of the information was given to the person with the lived experience, but without any, the provider just did not share their opinion and their hesitation and their preference. And we want the opinion of the provider, we don't want them just to give us all the information, we want to make a decision with them together, right? And this is what led Katie Charles, Amir M. Gafni and Tim Whelan to write for me a very important, and for many around the world, a very important paper, the shared decision-making in medical encounter, what does it mean? Or it takes at least two to tangle. And in this paper, they really describe the model, which I will show in the next slide. I just want to mention that in 2001, three, four years after the publication of the shared decision-making paper, the crossing the quality chasm, a set of patient clinician relationship and guidelines emerged of best practices for patient clinician relationship. And the emphasize of shared decision-making was very strong in this very important publication. So according to Charles and Gafni, shared decision-making is the model in the middle of the slide in orange. And according to this model, doctor and patient should do decision together. Doctors should provide medical information to patients. Patients should provide complaints, diagnosis, but also it is important to share personal information. By personal information, that when a doctor get information about, not just about the symptoms, but about the background of the patient. If they are, you know, divorced, what do they do for work? What are their preference? What is their insurance status, right? That helps the doctors to see the patient as a person, as a person with a health condition, rather than see them as a health condition. And the doctors are also encouraged to share some personal information about themselves. Like for example, what are their preferences? Do they agree, disagree? If they are very tired at the end of a long day, they are welcome to share it, right? So that the patient can understand why there might be less patient. Another important issue is deliberation, having time to think and discuss about the option and eventually making a decision together. During the years, we learned that shared decision-making like conceptualized originally by Charles and colleagues is not very linear. It's more of a non-linear process. And we also learned that we cannot ignore personality traits and also social demographic characteristics. And this is something that is very inherent and affect shared decision-making. Now, when we come to mental health, we see something very interesting. So in mental health, there is a gap between the value seen in shared decision-making and its actual implementation. As a field, providers, people with lived experience, family member who know about shared decision-making really think that this is a good thing to do. And compared to other field of medicine, this is probably a field that really, really want to have shared decision-making, but the implementation, the actual use of it is very lags behind other fields of medicine. And the question is why? So it's interesting because we know that people with psychiatric condition do not feel involved in treatment decision. This is a result from a survey of more than 1000 participants. And we see that if you look on those items, we see that participant in the survey, only 6% feel that their doctor want to know exactly how much they want to be involved. And 15% feel that the doc reported that the doctor asked them what they prefer, right? For me, this is amazing. And the other thing is that is interesting is that people with psychiatric condition make treatment decision all the time, but they make it in the dark. And this is very interesting why there is a fear. Sometimes they make people with a psychiatric condition make decisions and they hide it from their loved one. They hide it from their providers because of many reasons related to stigma. But the most important thing is that when people with psychiatric condition make decision without the collaboration of their doctor, sometimes, many times, it's actually contain risk for their health, right? There's a miscommunication. We know that in mental health, there is a common stigma about the ability of people with mental condition to make decision. And this stigma, unfortunately, still exists, and provider has this stigma, although not always discussed. And people with lived experience and family member who take care of people with lived experience also internalize this stigma. And there is agreement in silence that maybe people cannot do those decision. Now, other reasons why there are some barriers that are unique when we try to implement and do shared decision-making in psychiatry is characteristic of the illness itself. So there's a lot of issues about capacity, and I'm gonna talk about it at the end of the presentation about challenges. But, I mean, is there is a capacity of somebody with schizophrenia to make decision about stopping medication? There's a question like that. And often when I hear this, that people with, for example, with schizophrenia, sometimes they are afraid to tell their psychiatrist or their nurse prescriber that they want to change the dose or reduce the antipsychotic because they fear that if they're gonna share that, that this preference or this wish will be attributed to a deterioration in their mental condition, to a symptoms. Will somebody with type 2 diabetes, for example, wanted to change medicine or reduce the dose will never be suspected as their symptoms are exacerbated. So there is some additional barriers related to the symptoms and the illnesses themselves, and issues of liability and legal exposure that provider are engaged with that and affect their ability to really allow and trust their patient if the patient goes against their recommendation. I know that this is a very busy slide, but I still chose to present it because I wanted to show, and I'm gonna walk, we're gonna walk through it together. I wanted to show that although those challenges in doing shared decision-making in mental health, still a lot being done. And I wanted to bring this up. So if we, the first study of shared decision-making was conducted by a group in Germany led by Johannes Hamann in 2006. And I'm gonna talk about a study later. A year after, we see another study about involving people with depression. The first study was involving people with schizophrenia. We see a very important commentary by Bob Drake and Pat Degan in 2006 about how it is important to do shared decision-making and how it's aligned with the principle of personal recovery in mental health. In 2010, Duncan and colleagues conducted a systematic review which is a systematic scanning of the literature and surprise, they found three studies, the two studies by Hamann and the one by Law about shared decision-making. And just recently in 2022, Aoki and colleagues repeated the same search and they were able to identify 15 studies that use randomized controlled trial to test shared decision-making intervention in psychiatry. Now, our group in 2017 conducted the first systematic review of shared decision-making intervention, but we didn't bound ourself to randomized control trial. So we included any type of design and basically any type of SDM intervention. And in 2017, we found 31 studies of shared decision-making in mental health. We call this paper, Expanding the Concept of Shared Decision-Making in Mental Health. And in 2021, we repeated the same search and we find just in four years, 53 studies. And very recently we completed an umbrella review which is a review of reviews. And we were able to identify 10 systematic reviews that were published in the last 20 years on shared decision-making in mental health. So although all of these challenges, there's a lot of work being going on. And again, another slide that I just wanna show you, we're talking about two decades of shared decision-making. The first review was conducted by Hamann and colleagues in 2003, it was called Shared Decision-Making in Psychiatry. And in 2023, the umbrella review by Shamilovsky and colleagues was recently published on which is actually an umbrella review, a review of review. So we can see the difference, systematic review, each systematic review and scoping review include many, many studies, just to show that shared decision-making in mental health is alive and a kicking field area of practice and research. Now you're probably asking yourself, so, all right, stop with a theory. What is the impact of shared decision-making in mental health? So we noticed in our 27 systematic and scoping review that the main impact of shared decision-making is on shared decision-making related outcomes. We know that shared decision-making when we use those intervention, we know that people with lived experience, trust their provider more. They feel more empowered to make decisions. They are more involved. They feel more safe to share their preferences. We also noticed that there is some impact on health outcomes, on quality of life. And I don't like the word adherence, but this is taken from the paper. We use treatment adherence, but we can think about it as better engagement with treatment and with services. Right now, there is kind of a, in my opinion, right? There is a common misunderstanding with what actually shared decision-making improving, right? So many, many things that shared decision-making directly improve clinical outcomes and symptoms. And this is the primary outcome of a shared decision-making process. Well, I kindly disagree. I think that, and I think that based on research and study of myself and others, shared decision-making improve shared decision-making related outcomes. Health literacy or the knowledge about our health condition, self-efficacy, empowerment, trust, therapeutic alliance, very important variables. Now, when a person with lived experience has greater literacy, greater self-efficacy making decision, empowered, trust, feel greater therapeutic alliance with their provider, they are more satisfied with their decision and they are more involved. And when we are satisfied and more involved, we just tend to follow our choice. So we are more engaged in our care. We are more, I don't like to use the word adherence, but we are adhere or comply more with the treatment, with the service. And then we see better clinical outcomes. And not to forget, shared decision-making in mental health also promote personal recovery, not just clinical outcomes. And we also kind of, in one of our work, we developed a model, we call it, we call this model the ripple effect of shared decision-making. So imagine shared decision-making is a small rock that we are throw into a pond and there are some ripples. So the immediate, the proximal outcome, the immediate outcome are all of the shared decision-making related outcomes like satisfaction, decision self-efficacy, et cetera, all the outcomes that we review in the previous slide. And the more distal outcomes related to adherence, recovery, improvement in health outcome, et cetera. So how we measure shared decision-making? If we want to go tomorrow and measure shared decision-making in our practice, how to do that? So I have to admit that unfortunately, there is no shared measure for shared decision-making yet that was developed specifically for mental health or for psychiatry. All of the measure, so most of the measure that researchers use in research and that are recommended to use to improve practice are borrowed from other health condition. There are currently to the best of my knowledge, only two measure of shared decision-making that were adapted to mental health. One, our team adapted, it's called the SDMQ-9-PSI. It's basically adaptation of the nine item shared decision-making questionnaire. I will show you an example in the next slide. And there is another tool called Decision Quality Instrument, DQI, but this is a specific tool for making decision on antidepressant medications. The other tools like Decisional Conflict Scale, for example, and others have not really been validated in mental health and we need this. So I'm kind of calling for people in the audience, like we need more effort on that. And just one more word about this slide is that shared decision-making, we measure several aspects of it. So the majority of the tools are self-reported. So we can actually administer to our clients tomorrow shared decision-making questionnaire. Some of the questionnaire are focusing on things that influencing decision. Other questionnaire focus on the decision process and others on the decision outcomes. Other type of measures called observer measures. Usually we are trying to record an appointment, either audio record or video record, and then a third person analyze and check the level of shared decision-making based on several measurements. So as an example, this is just a three snapshot, but on the left, we see three items from the Decision Conflict Scale. It has 16 items in total. Very common scale that need adaptation to mental health, but again, we can look on some of the items. The SDMQ-9 site that we have adapted to mental health has nine items. I like this scale, not only because we adapted it, but because it's short, because it's very, very actually accurate to look on the shared decision-making process. And it has a provider version, the SDMQ doc. On the right, we see an example of observer measure. So again, when somebody listened to an audio recorded appointment or watched in a video, they can rate. For example, I'm just gonna read item number one. I mean, the rater need to decide if the clinician draws attention to or confirms that alternate treatment or management option exists, et cetera, and then rate the level. This tool can give us a very quick snapshot. If we just wanna know, like tomorrow you wanna know in your clinic, what is the level of shared decision-making that you do with your clients or that your provider does with you or how you feel towards your provider, you can just reach out to me at the end of this, email me, and I'm happy to share those measures. They are free and available, and you can have a very quick snapshot of what is the shared decision-making level. I do wanna mention that my PhD student from University College London, Martha Shimulovska, is right now working on the first bottom-up shared decision-making in mental health measure. She is really at the final stage, but I'm very excited about it because that will be the first measure of shared decision-making that was developed in a collaboration of people with lived experience, family member, clinicians, and in very thorough process. So that will probably be ready in the coming months. All right, so we talked about measures and now how to do shared decision-making. Can we do shared decision-making in practice and what intervention and tools are available? So I've been asked a lot, like, do we really need shared decision-making, intervention, and tool to do shared decision-making? And the answer is honestly, no, we don't need it. We can do shared decision-making without intervention tool, but there is a big but here. It's very hard to do it without the intervention because of many factors. I just had on my slide here several factors, but there is many more. For example, the appointments are very, very short. So without having tools, it's very easy to get diffused. It's very hard to focus. Settings, so again, I'm not saying that all of the offices look like the one in the photo, but if we sit on a chair like that and we would like to do shared decision-making, we don't have any tool or any intervention that can help us, it's very hard. It's not really a welcoming environment. A lot of time, providers are doing computer-centered care, right? They are focused more on documenting in the electronical health records, their finding, and they are less looking at their clients or their patient. Clinician suffer from burnout. And at the same time, a lot of time, a person who see the doctor is their patient, right? They are not feeling well and they are more passive. So it's really hard to do shared decision-making without something that can help. I also wanna talk about fear. There is fear of provider with the issue with liability as we talked about it and legal aspects. So having an evidence-based intervention or tool give the provider the approval and help them initiate shared decision-making. And person with lived experience, of expressing, for example, expressing preference of saying, I don't want to take this antipsychotic medication. Because they afraid that if they're gonna share it, again, this will be attributed to their health condition rather than their preference. Many, many reasons, social determinants of health, SDOH. We know that when there is clients and provider from different sex or gender or race affect also the ability to initiate a shared decision-making. So all of this mini speech was to say that we don't have to do shared decision-making. And actually, I'm sure that there are providers that are able to do shared decision-making without tools. But it's just more helpful to have those intervention because they help us to ensure that shared decision-making happen. Within again, the limitation of existing healthcare systems and those intervention and tools help us to structure the process, make sure that we cover everything. We meet all the milestone of a shared and all of the principles of shared decision-making process. And also they supposed to be very brief and focus and match to the limitation of the reality of a very short appointment time and the fact that provider don't have a lot of time for training. This is the privilege to talk one hour on shared decision-making. It's not happen a lot. And also those intervention and tools really help to standardize shared decision-making across different providers and different settings. So if we use the same intervention theoretically in a safety net in the VA and in a private clinic, we were supposed to have the same process and similar outcome theoretically, potentially. So this is a busy slide and we're gonna walk through it together. But in 2017, in our systematic and scoping review on expanding the concept of shared decision-making, we found that there are several tools, several categories of tool. The most common tool of shared decision-making intervention called decision aid, decision aids, or decision support tools. I'm gonna share with you an example in the next few slides. And those are the tools that are mostly used in studies and in practice. And they also have the best outcomes in terms of improvement in shared decision-making related outcomes and health outcomes and recovery outcomes. But there are also additional type of shared decision-making intervention like intervention that elicit shared care planning, intervention that elicit patient preference and values et cetera, et cetera. Recently, as part of our umbrella review, we were able to present a more clear and clean categorization. So on the one end of the spectrum, there are the decision aid or decision support tools, very brief tool that present option and information. And at the other spectrum, there are the more complex type of intervention. When I'm going to share a few examples, I'm gonna use this language, this categorization to identify which intervention I'm talking about. And finally, before I'm gonna show you a few example, I just wanted to talk. So what is the content of the shared decision-making intervention? So first of all, shared decision-making intervention are driven by the diagnosis of the patient. Shared decision-making intervention are driven by the diagnosis and the condition, and they're also impacted by the setting. We're now talking about broadly four type of categories of shared decision-making intervention and tool. The most common category really related to pharmacological decisions. The other type of SDM intervention tools are about talk therapies and behavioral health intervention. There are also tools that doing a mix between pharmacological and behavioral health intervention. And there is, to my knowledge, there is one intervention of shared decision-making about choosing a psychiatric rehabilitation and community mental health programs in the community. Now, shared decision-making in mental health can be done almost everywhere. So we can do shared decision-making in inpatient setting. Actually, the first study of shared decision-making in Germany was conducted in a psychiatric ward. We can do it in outpatient, in primary care, and of course in the community and also in telehealth. This is also important to mention that. So I'm gonna give, I'm gonna provide kind of a detailed example now of a tool for pharmacological decision. And also I'm going to review quickly few other examples. And if there are any question or any, if you would like more expansion on this topic, please feel free to reach out to me and email me and I'm happy to meet and talk and share. So I would like to talk about the Antipsychotic Medication Decision Aid or the APMDA. Why we developed this tool, very in a short, so we know that people with psychosis, people with schizophrenia and their clinicians and their family member struggle with decision about using or prescribing antipsychotic medication. We know that this issue is rarely discussed during medical encounters. And by rarely discussed, there is no discussion, not enough, I should say, not enough discussion of benefits and risk. And there is really no discussion of why people stop, what are the reason, why they wanna change? And this lead to a situation that there is high rates of discontinuation of antipsychotic medication. Really, really high rates. And we felt that there is really a big need to improve antipsychotic decision-making in psychiatric consultation. So we chose to develop a decision aid and this is a great example to understand what are decision aids. They are very simple, as you can see, this is a PDF or it can be just a one A4 paper. But although it's very simple, I wanted to mention that a lot of effort has been given to this development of this tool. So this tool was developed in collaboration between people with lived experience, their family member, psychiatrists, non-psychiatric mental health provider, researchers. It is based on very thorough literature review and a long process of two years to develop the format and the content of this tool. And this tool has three options, for example, continuing medication, adjusting antipsychotic medication, and stopping. We included frequently asked questions, what does this involve, what are the benefits, risks, et cetera. And again, the information within this cell is evidence-based. And if we could not find evidence-based, we use lived experience and clinical experience to supplement that. And we actually tested this tool very recently in a first episode psychosis program in Philadelphia. And we found, we did a small randomized control trial. We asked three psychiatrists to use this with their clients versus not using versus treatment as usual. And we found that it's very feasible to use this tool in psychiatric consultation and that there was no difference in time between using the tool, the SDM tool to just treatment as usual. And we did found that clients that received the intervention, that received the APMDA had greater reported shared decision-making. And we now got another funding from the NIMH to further test this decision aid in a larger first episode psychosis program. Additional example of shared decision-making tool for pharmacological decision include another decision aid developed by LeBlanc and colleagues for antidepressants decision in primary care. There's some work from Japan that come from several researcher that look on developing decision aids or shared care planning interventions. So there is a really emerging work and there's a lot of tool and those tool are available either on a designated website or by contacting the research groups. I want to show you a few example of shared decision-making tool for choosing between different thought therapies and behavioral intervention decision. So there is one study about helping parents of children with autism spectrum disorder to become more informed when they make a decision on speech pathology practice. It's a multi-competent intervention that has a decision aid and additional elements. One of the first studies of shared decision-making in mental health were actually took place in the VA led by Mott and colleagues and it was about choosing psychological treatment for PTSD. There is a recent work by Langer and colleagues about doing shared decision-making choosing different psychotherapy option for youth and also a recent project in Australia about choosing different psychological treatment for people who has comorbidity of alcohol, substance use and depression. Now I'm going to share a few example of shared decision-making tool that for a mix of pharmacology and therapy decision. So the first study ever conducted on shared decision-making by Johannes Amann and colleagues from Germany in 2006 was a shared decision-making intervention that was a multi-competent intervention that included a decision aid but additional element. It was designed for people with schizophrenia while they were still hospitalized in acute psychiatric inpatient wards. Interestingly, the interaction, the shared decision-making was with a nurse as the preparation for meeting with a provider and not so many years ago Rao and colleagues tested a multi-competent shared decision-making intervention in the USA for depression that included choosing pharmacological and also behavioral psychological treatments. There is, to my knowledge, there is one shared decision-making tool for community services, for choosing community services and psychiatric rehabilitation program in the community. So it's a shared decision-making for psychiatric rehabilitation services before discharge from psychiatric hospital. In that case, we use a shared decision-making intervention that we implemented in a psychiatric hospital and we ask social workers, occupational therapists, psychiatrists, psychologists to use that and help patient in psychiatric hospital choose which type of rehabilitation option they want to choose upon their discharge in the community. They could have choice, you know, housing, employment, education, etc. And the intervention is also a multi-competent one that included a computer as decision aid or CDA. It started with some ice breaking, goal setting, showing of option, doing preference contemplation, making a choice and planning ahead. Here I have a snapshot of what it looks like. This is from one of our training videos. So this, we can see an example of step two goal setting and step three. And the reason that they wanted to include that is because we did something interesting. We asked the provider and the clients to sit near each other. We asked them to touch each other and share the pen, share the paper. We wanted them to behave as if they are in a work meeting, like colleagues. And if you remember, we really wanted to kind of balance the power asymmetry by asking them to behave in a certain way. And then when they watched the decision aid, the CDA computerized decision aid, we asked them to look at the computer together to give, to basically ask the clinician to provide the mouse to the patient and let the patient have a control on the discussion. And just doing that increased, significantly increased the level of shared decision making. Now, finally, towards, and I appreciate your patience, towards the end of my talk, I just want to talk about challenges and opportunities in shared decision making. So what are the challenges that we are still facing? First of all, we don't really have a conceptual framework for shared decision making in mental health. On the right, you can see a slide from the NIMH RAISE program. They see shared decision making as a framework for a coordinated specialty care for first epidural psychosis program. On the left, I, based on literature review and studies of myself and others, try to identify what is the conceptual framework. But again, we still need work to do because without a conceptual framework, it's very hard to develop intervention measures and also training and have recommendation for implementation. As we talked about it, we are missing measures for shared decision making in mental health. And we have a strong implementation challenge that is not just in mental health. Like a lot of time, providers say that they do share decision making. But I want to say that, you know, being nice doesn't mean necessarily that we are doing shared decision making. And also sometimes providers are embarrassed to say they do not know how to do shared decision making. And there's also training challenges. There's not a lot of training. And if there is a training, it takes a lot of time. And other challenges is really the fact that shared decision making by development is the model that only look on two players, a patient and a clinician. But in reality, and especially in mental health, we often have family member or other significant people that involve. And it's make much harder to do a decision for three people or more. And again, the fact that we are still missing intervention for shared decision making, and we need more sociocultural adaptation of existing intervention. But what are the opportunities? Peer support. Peer support are amazing resource that we are fortunate to have in the mental health field. And peer support can really promote shared decision making. There is, I don't think I even need to mention, but the Common Ground and the amazing work by Pat Deegan and colleagues developing a decision support center. And we think that that peer can really be the leaders of doing shared decision making on non-pharmacological treatment. And this is really underutilized. So there's a lot of opportunity here. Most of the studies in shared decision making in mental health are on people with SMI, mainly schizophrenia and depression. We should expand shared decision making to people with comorbidity, neurodevelopmental disorder, PTSD, eating disorder, psychomatic medicine. The issues of, we still need to address the stigma and the beliefs about cognitive difficulties. Most, there is basically no research that evaluates if a performance on measurements that look on cognitive functioning motivation really predict real life decision that is shared decision making. So we need to do the studies and we really need to address this topic because this is one of the main barriers. And finally, we need to address the fact that to create shared decision making for family members, which is very common in mental health, and also to work on soft communication skills and improve communication styles for clinicians. So to conclude, and I'm sorry if I took a little bit more time than expected, but we talked today about two decades of shared decision making in mental health, 20 years of research and practice. We talked about the various shared decision making tools and intervention and measures, and there are challenges, but I believe that we can overcome it together, but there is plenty of opportunities. So this is some slides of references, but I just want to say thank you so much for your time and attention and for the opportunity to be here. This is my email. Please contact me at Yara at Temple EDU for any question. Always happy to meet, to do a Zoom meeting, discuss, share. Thank you again. Thank you so much. And I will tell you that people have already been asking for some of the measures that you've developed, and so I did share with your email that they should contact you to talk about that. Before we shift into Q&A, I just want to take a moment to let you know that SMI Advisor is accessible from your mobile device. If you could go to the next slide. Use the SMI Advisor app to access resources, education, upcoming events, complete mental health rating scales, and even submit questions directly to our team of experts. You can download the app now at smiadvisor.org forward slash app. So let's go to the next slide. Let's go to some questions. So I really loved early in your talk, someone pointed out that the principles of SDM that you raised around slide 17 are also really near trauma-informed care principles, which I really liked about evening the power differential, really realizing that everybody in the room is an expert to share their expertise back and forth. And so I just thought that was a nice point that someone made. Another person wrote in and said, I'm curious to know if treatment plans like individual service plans that are typically used in mental health case management settings are part of shared decision making. So as case managers, one-to-one interactions between a case manager and a client in practice tends to be collaborative and might allow opportunity for SDM. So I think this person is pointing out, as I think you made a really good point, there's almost no time in case management, in the care of individuals, other than when it's an emergency where SDM can't be used. Do you want to say a little bit about that? I very much appreciate the summary of those two points. I love it and I agree with that. I think that shared decision making, and one of the reasons that I was very excited about being here, is that shared decision making can be applied, in my opinion, with the needed adaptation to almost any decision node, to almost any juncture. We can develop, for example, if we're talking about lack of time, we can develop decision aids. These are the most brief, easiest tool to be used. It looks easy, takes some time to develop, but for example, we can definitely use it for the work, we can definitely develop and look on decision aid for the work of case managers. I think that I invite the person that asked about it to contact me directly and I would be very, very happy to follow up and think together about a project, about how we can promote this idea. I hope I answered the question. Yeah, I think you did. I think her or his point is really that, and I think they're just pointing out, case management just lends itself to shared decision making. It really does lend itself. We just have to remind ourselves over and over again that there's another expert in the room, there may be some differentials in power that they're feeling that we need to alleviate, but when we're talking about someone's recovery goals and we're generating those and we're thinking about how we're going to get to them, shared decision making is certainly a model that should be leveraged during that time. A lot of people wrote in that they really appreciate your talk. I wanted to ask you just to expand a little bit more on family involvement. So there are times when individuals with serious mental illness may bring their family. This may be a child, adult child, maybe a partner, maybe a really close friend. Right. How do you seek consent from the individual to include the family member? Do you do that on your own with the individual? How do you make sure they're okay? Because sometimes we just assume that people with, for example, schizophrenia should have somebody else there, but maybe they don't want them. Can you talk a little bit about how you do that? Yes. Great question. I want to separate my discussion on adult, like individual who are 18 and over, young adult, and above. Family members are definitely an integral part of many of shared decision-making juncture in mental health. Actually, in one of our projects right now, we are facing those questions exactly and how to make sure. So what did we learn is that some individuals with a first episode in one of our projects with first episode psychosis, some of them don't want their family member to be involved, but some of them live with their family members because they're a young adult, they're 19 or 20. This is a big dilemma of what to do. One of the options is actually to do a pre-shared decision-making discussion. So having some nudge, as I mentioned, we are looking on the APMDA, the decision aid that we developed, but we kind of developed a preceding step, which we are actually trying to elicit preference for shared decision-making, which is one of the principles of shared decision-making. We want to make sure that we meet the preference of the participants. Also, if the participant doesn't want the family, we need to make sure that we share this with the family or explain why the family think that they should be involved. Other thing is, for example, making sure that the shared decision, many interactions today are via telehealth. So making sure that there is a private room, so they don't have to do the appointment in the living room, or at least they can wear earbuds. And sometimes the people with the lived experience do want their family, and many times, but then sometimes we are seeing, you know, opposing opinions between the provider, between the family, sometimes between the parents themselves, and the person. I don't have really answer how to solve it now, but we know that at least we need to understand if A, the person with the lived experience want the involvement of the families, and B, make sure that if not, there is a private space to make the decision, and C, and this is the most challenging part, is to make sure how we can create a polyadic or triadic decision-making. Work in progress, as I mentioned, we still need to develop better practices for shared decision-making for those situations. Yeah, I mean, I think it's not perfect, right? But I think most importantly is this consent from the person with lived experience to ensure that they want these other voices in the room and considered in part of the decision-making, and I know you feel that way. I know I need to move on. The only other thing that I want to say that I'm cheering for in your talk is the role of peer support specialists and how important they can be during a shared decision-making process, and I appreciate you bringing that up. All right, well, we'll move on. Next slide. If there are any topics covered in this webinar that you want to discuss with colleagues in a mental health field, post a question or comment in our SMI Advisor Discussion Board. This is an easy way to network and share ideas with other clinicians who have participated in this webinar, and if you have any other questions about this webinar or any other topic related to evidence-based care for SMI, you can get an answer within one business day from our SMI Advisor National Experts on Serious Mental Illness. This service is available to all mental health clinicians, peer support specialists, administrators, anyone working in the field who works with individuals with SMI. It's completely free, and this consultation service is available to you. Next slide. SMI Advisor offers more evidence-based guidance on shared decision-making, such as the webinar Shared Decision-Making, Activation of Patient-Provider Teams. This webinar underscores the subtleties of shared decision-making and the important circumstances that must be available for it to succeed. Access the webinar by clicking the link in the chat or downloading the slides. Next slide. To claim credit for participating in today's webinar, you need to meet the requisite attendance threshold for your profession. After the webinar ends, click Continue to complete the program evaluation. The system then verifies your attendance, puts those together, and gives you credit. This may take up to an hour, not the process, but it may take an hour for the system to calculate the time that you've been on this. That depends on how much Zoom is being used at the time, so just be patient. And last slide. Please join us tomorrow, December 1st, as Melissa Rivera presents Navigating the Complexities of Opioid Use Disorder in Aging Adults, Comorbid Psychiatric Diagnoses, and Changing DEA Regulations. This webinar is again tomorrow, December 1st, at noon Eastern time. Thank you, everyone, for joining us, and thank you, Dr. Zisman-Elani. What a pleasure it was to meet you, and thank you for bringing your expertise forward to our audience. Take care, everyone.
Video Summary
Dr. Yara Zisman-Elani, an expert in shared decision-making in mental health, presented a webinar on the topic. Shared decision-making (SDM) is an ethical imperative that promotes person-centered care. It involves collaborative decision-making between patients and clinicians to achieve better care outcomes. SDM has been shown to increase trust, knowledge, and self-efficacy of patients, leading to improved health outcomes. Despite its benefits, the implementation of SDM in mental health lags behind other medical fields. One challenge is the lack of knowledge and understanding of SDM among clinicians and patients. There is also a need for specific measures and interventions for SDM in mental health. Various SDM tools and interventions have been developed, including decision aids that provide information and options for treatment decisions. These tools help to structure and standardize the SDM process. There are also opportunities to further enhance SDM in mental health. Peer support can play a significant role in promoting SDM, and SDM can be expanded to include individuals with comorbid conditions and neurodevelopmental disorders. However, challenges remain, such as addressing stigma, addressing cognitive difficulties, and ensuring family involvement in SDM. Overall, SDM has great potential to improve mental health care by providing person-centered and evidence-based care.
Keywords
shared decision-making
mental health
person-centered care
collaborative decision-making
trust
knowledge
self-efficacy
health outcomes
implementation
clinicians
Funding for SMI Adviser was made possible by Grant No. SM080818 from SAMHSA of the U.S. Department of Health and Human Services (HHS). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement by, SAMHSA/HHS or the U.S. Government.
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