Patient-Centered Care Unit 7: Shared Decision-Making Welcome to Patient-Centered Care, Shared Decision-Making. This is Lecture a. Lecture a – Introduction This material (Comp 25 Unit 7) was developed by Columbia University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0006. This work is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/4.0/.

Shared Decision-Making Learning Objectives Objective 1: Describe shared decision-making (Lecture a) Objective 2: Explain the use of decision aids and how they facilitate shared decision-making (Lecture b) Objective 3: Debate alternative strategies to implement decision aids within workflows (Lecture b) This unit will cover the following learning objectives: 1) describe shared decision-making; 2) explain the use of decision aids and how they facilitate shared decision-making; and 3) debate alternative strategies to implement decision aids within workflows. This lecture will give an introduction to shared decision-making.

What is shared decision-making? Shared decision-making (SDM) is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences (Informed Medical Decisions Foundation) Shared decision-making, or SDM, is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences. The aim of shared decision-making is to ensure that patients understand their options and the pros and cons of those options and patient’s goals and preferences are used to guide decisions. SDM honors both the provider’s expert knowledge and the patient’s right to be fully informed of all care options and the potential harms and benefits.

When is SDM most appropriate? Significant clinical uncertainty, ambiguity, or simply, the absence of evidence “Equipoise”: when evidence for benefits and harms are closely balanced In the context of clinical practice guidelines When USPSTF (U.S. Preventive Services Task Force) recommendation is Grade C, the balance of benefits and harms at the population level is close and the net benefit is small Shared decision-making is best used for problems involving clinical uncertainty, ambiguity, or simply an absence of evidence. It is also appropriate in situations of “equipoise”, which is when evidence for benefits and harms is closely balanced. It can also provide the structure for providers to discuss clinical practice guidelines, particularly guidelines with U.S. Preventive Services Task Force Grade C recommendations, to say that at the population level, the balance of benefits and harms is very close, and the magnitude of net benefit is small. With transparency about evidence, patients, together with their providers, can make decisions about guidelines as they apply to individual risk profiles, preferences, and contexts. For example, the decision to start screening mammography in women prior to age 50 years should be an individual one, according to the U.S. Preventive Services Task Force. Some women who place a higher value on the potential benefit than the potential harm may choose to begin biennial screening between the ages of 40 and 49 years. For other women, mammography screening could be viewed as unnecessary or even harmful, based on individual risk factors and personal preferences. Health IT Workforce Curriculum Version 4.0

Why is SDM needed? The positive impact of patient involvement in decision-making includes: improved patient knowledge; a greater sense of control over their illness; symptom improvement; higher decision satisfaction; and more trust in physicians. Patients report fewer depressive symptoms, anxiety, fatigue, concerns about their illness, and lower decision conflict. When patients discuss preferences with their physicians, they are more likely to get the care they want. SDM can help contain health care spending by avoiding treatments patients do not want, which results in reductions in unwarranted variation in care and costs, and greater alignment of care with patients' values. 7.1 Figure (Kukafka, R., 2016.) Adapted from Shay and Lafata, 2015; Stacey, Legare, and Col, 2014. Health IT Workforce Curriculum Version 4.0

SDM is essential to quality health care Good quality care requires that tests and procedures be medically appropriate and performed safely, but also reflects care that is desired by the patient Preconditions for health care delivery emphasize SDM as mediator / moderator of health care quality Helps providers implement evidence in a manner that reflects patients’ preferences (Floyd, Fowler, Levin, and Sepucha, 2011) SDM is also needed because it is essential to quality health care. Good quality care requires that procedures, treatments, and tests be not only medically appropriate and performed safely, but also desired by informed patients. Patients construct their preferences through evidence-informed deliberations, a key step in the SDM process. In the era of health care reform, it is increasingly evident that among the most important reforms needed to improve medical care are those that would inform and amplify the voice of the patient when medical decisions are made. Systematic reviews of the preconditions for improving health care delivery have emphasized the importance of shared decision-making as a mediator and moderator of health care quality. As we will see in the next slides, SDM is a process that can help providers implement evidence to support patients’ preferences when deciding among test and treatment options. Health IT Workforce Curriculum Version 4.0

Steps in the SDM process A key word in the shared decision-making definition is “process”. In this slide, we will review the steps that make up this process. First, it is essential to make explicit to patients that there is actually a decision that needs to be made. Over and over again, patients report that they did not even know that a decision was being made. Next, once it is clear that a decision is to be made, for patients to have a meaningful role in the decision, they have to be given an objective, unbiased presentation of reasonable options. They need to be able to consider the risks and benefits of those options. This step in the process is often referred to as “information exchange”. There can be information that the patient brings into the visit and there is information that the provider brings. Key at this step is that the patient understands their options for managing their condition. Understandably, it is not a simple task to translate evidence into options that people can understand and to communicate the risks and benefits of options. However, as we will discuss later in this unit, patient decisions aids are tools that can assist the SDM process. Understanding what matters most to patients is the next step. Patients need to understand what are their values and preferences for the outcomes of each option presented. Consider that patients may not have well-formed preferences at the onset, but rather they may construct them as they gain more information. During this process, it is also important to consider feasibility, since patients may value some options, but certain options may not be feasible for them. Agreeing on a choice and a plan for implementing the decision are next steps. However, keep in mind that a choice could be taking no action. For example, a provider or a patient may say “we don’t have to do anything right now, we can wait”. This is the conservative option that perhaps is not practiced much in health care today, but it is still a decision, and one that implies that the decision could potentially be revisited at a later time. As an example, a patient and an oncologist might agree to re-evaluate a decision after several cycles of chemotherapy to determine its effectiveness and to discuss whether or not to proceed with another procedure or treatment. 7.2 Figure (Kukafka, R., 2016). Adapted from Levinson, Kao, Kuby, and Thisted, 2005. Health IT Workforce Curriculum Version 4.0

Deliberation vs. determination It is useful to distinguish between deliberation and determination in the shared decision-making process. Deliberation are the steps that enables patients to consider factors that can influence a choice. Determination is making a choice. 7.3. Figure (Kukafka, R., 2016). Adapted from Levinson, Kao, Kuby, and Thisted, 2005. Health IT Workforce Curriculum Version 4.0

Do patients want to engage in SDM? In a national study of 3000 participants: 96% of the respondents preferred to be offered choices about their care and asked for their preferences 52% wanted to defer their decisions to their clinicians but still wanted to engage in deliberation about choice Some patients may opt to defer their decision to providers, but they still want to be offered choices about their care and asked about their preferences (Levinson, Kao, Kuby, and Thisted, 2005) Some patients may want to engage in deliberation but when it comes to determination, they may opt to defer the decision to their provider. In a national study of nearly 3000 participants, mostly all respondents, 96%, regardless of their demographic characteristics, preferred to be offered choices about their care and asked their preferences. About half of the participants, 52%, wanted to defer final decisions to their clinicians, but they still wanted to engage in deliberation about the choice. What does this tell us? Even when patients opt to defer their decision to providers, they still want to be offered choices about their care and asked about their preferences. Most people want to discuss options and share their opinions about treatment with providers. Health IT Workforce Curriculum Version 4.0

Misconceptions about SDM Misconception #1: providers are already doing SDM Physicians' inferences about patient values and preferences are often inaccurate, even among physicians with more clinical experience and longer patient-physician relationships Therefore, engaging a patient in discussion of values and preferences is essential to avoid a “misdiagnosis” of patient preferences (Mulley and Trimble, 2012; Street and Haidet, 2011) There are some widely held misconceptions about doing shared decision-making that perhaps prevent it from being practiced. In the next few slides, we will review some common misconceptions. One is that providers are already doing shared decision-making and already incorporate patient preferences into their treatment recommendations. However, research shows that physicians' inferences about patient values and preferences are inaccurate even among physicians with more clinical experience and longer patient-physician relationships. In other words, there are significant gaps between what patients want and what doctors think they want. In a study conducted by Lee and colleagues, doctors believe that 71 percent of patients with breast cancer rate keeping their breast as a top priority. But what is the actual figure reported by patients? 7 percent. Doctors also believe that 96 percent of patents scheduled to undergo chemotherapy rate living as long as possible as a top priority. Again, what is the actual figure reported by patents? 59 percent. “Preference misdiagnosis” is a term used to describe a providers inaccurate inferences of patient preferences. Many believe this may be the most common form of medical error in health care.   Health IT Workforce Curriculum Version 4.0

Misconceptions about SDM (Cont’d – 1) Misconception #2: SDM will increase health inequalities by excluding disadvantaged patients Systematic review and meta-analysis of randomized controlled trials and observational studies do not confirm Rather, disadvantaged groups may benefit from SDM more than groups of higher education and / or literacy (Durand, Carpenter, Dolan, et al, 2014) Another misconception about shared decision-making is that it will increase health inequalities by excluding disadvantaged patients. There is a belief by some that SDM will only attract and benefit those who naturally seek out information, are educated and empowered, and able to advocate for their needs. And consequently some believe that SDM disfavors disadvantaged patients. This is not true. A systematic review and meta-analysis of randomized controlled trials and observational studies show that disparities in knowledge, decisional conflict, and uncertainty between disadvantaged groups and more privileged populations tended to disappear after use of SDM interventions. Disadvantaged groups may therefore benefit from shared decision-making interventions even more than people with higher literacy and / or education groups. In the long-term, SDM may actually help to reduce health disparities.   Health IT Workforce Curriculum Version 4.0

Misconceptions about SDM (Cont’d – 2) Misconception #3: SDM takes too long There is little evidence that SDM takes longer and actually there is conflicting evidence that use of a decision aid and SDM increases consultation times One study found consultation increased by six minutes, another study found eight minute decrease Therefore, there is no evidence that SDM systematically increases visits when compared with visits that do not include SDM (O’Connor, Bennett, Stacey, et al, 2001; Bekker, Hewison, and Thorton, 2004; Green, Peterson, Baker, et al, 2005) A third misconception about shared decision-making is that it just takes much too long. There is little evidence to prove this. Although visit length may vary depending on the context, no one has proven that shared decision-making systematically takes longer than visits that do not include SDM. With respect to the use of patient decision aids to facilitate SDM, trials cited in the Cochrane Database of Systematic Reviews found conflicting evidence that use of a decision aid increases consultation times. One study found consultations increased by six minutes when a decision aid and shared decision-making were used. Another study found interaction time was eight minutes shorter when similar consultation techniques were used. Therefore, there is no evidence that SDM systematically increases visits when compared with visits that do not include SDM. Health IT Workforce Curriculum Version 4.0

Misconceptions about SDM (Cont’d – 3) Misconception #4: patient education will lead to SDM Patients may not recognize feel that they have “expertise” to bring to the clinical encounter It is important to consider not only patient knowledge, but also how much power and influence they feel they have in the decision-making process (Joseph-Williams, Edwards, and Elwyn, 2014) A fourth misconception is that patient education will lead to shared decision-making. Knowledge may contribute to the shared decision-making process, but a patients’ capacity to participate in SDM is also linked to how much power or influence he or she feels that they have in the decision-making consultation. Patients may not feel that they have “expertise” to bring to the clinical encounter. However, their expertise is the knowledge about their personal preferences and this knowledge is important. This inequity in knowledge may contribute to the power imbalance that can occur during clinical encounters. The team of health care providers, not only the physician, can contribute here. In fact, when patients were asked how best to implement SDM in clinical workflow, they felt that the nurses should add support by listening to their preferences. Patients felt that the nurses can help to overcome the power imbalances; they wanted someone to advocate for them. This function is not limited only to nurses, but could be carried out by other health professionals, such as social workers, peer coaches or advocates, or community health workers.   Health IT Workforce Curriculum Version 4.0

Interprofessional Shared Decision-Making (IP-SDM) Model Addresses three levels within the health care system: Micro-level (individual): patient’s health problem that requires a decision Meso-level (team/organization): health care teams within an organization Macro-level: broader policies and social contexts To see a visual of the IP-SDM model, please go to: https://decisionaid.ohri.ca/docs/develop/IP-SDM-Model.pdf (Stacey, Legare, and Pouliot, et al, 2010) A model of SDM called the Interprofessional Shared Decision-Making Model provides some guidance with respect to the different levels of support needed to provide SDM. The model addresses three levels within the health care system. The micro-level is the individual level where the patient presents with a health problem that requires a decision. The meso-level incorporates the health care teams within an organization. The macro-level refers to the broader policies and social context that can facilitate or hinder the SDM process. The underlying assumption is that an interprofessional approach to SDM within clinical encounters will not occur independently of the influence of factors from the health care system level. Health IT Workforce Curriculum Version 4.0

SBM is slow to become part of the clinical encounter While the pendulum is swinging to more patient-centered health care and involvement of patients in decision-making, evidence shows that shared decision-making is slow to becoming part of the clinical consultation Providers can learn to engage patients in shared decision-making as patients would prefer to have a more active role in decision-making While shared decision-making has been slow to become part of the clinical encounter, transition from volume-based to value-based care and several recent developments will put increasing pressure on hospitals and health care providers to develop strategies for shared decision making. For example, clinical guidelines such as those for screening for breast cancer, now emphasize the importance of shared decision-making. The National Committee on Quality Assurance’s Patient-Centered Medical Home Recognition program, regulations for accountable care organizations, and insurance and employer group recognition programs all require organizations and clinicians to engage patients in shared decision-making. When patients choose what they want — rather than what the health care provider is offering — many opt for less-intensive, less costly treatments and they report higher satisfaction with their care. The importance of shared decision-making is now widely recognized, and the implementation, as we will learn in the next lecture on patient decision aids, can assist health care organizations and providers in adopting shared decision-making. Health IT Workforce Curriculum Version 4.0

Unit 7:Shared Decision-Making, Summary – Lecture a, Introduction Shared decision-making is a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences Shared decision-making is important for health care quality, but should be used when appropriate There is a process for shared decision-making, which includes deliberation and determination There are some misconceptions about shared decision-making and there is slow adoption, but in general, patients would like to engage in decision-making This concludes Lecture a of Shared Decision-Making. To summarize, we defined shared decision-making as a collaborative process that allows patients and their providers to make health care decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences. There are many benefits to shared decision-making that are related to health care quality, but SDM should be used when appropriate. There are several steps in the SDM process and they can be categorized into deliberation and determination. However, SDM is slow to be adopted in the clinical encounter because there are some misconceptions from the provider perspective. But in general, patients would like to engage in shared decision-making.

Shared Decision-Making References – Lecture a Bekker, H.L., Hewison, J., & Thorton, J.G. (2004). Applying decision analysis to facilitate informed decision making about prenatal diagnosis for Down Syndrome: a randomised controlled trial. Prenat Diagn, 24, 4, 265-275. Durand, M.-A., Carpenter, L., Dolan, H., Bravo, P., Mann, M., Bunn, F., & Elwyn, G. (2014). Do interventions designed to support shared decision-making reduce health inequalities? a systematic review and meta-analysis. PLoS ONE, 9, 4), e94670. Fowler Jr., F.J., Levin, C.A., and Sepucha, K.R. (2011). The voice of patients: informing and involving patients to improve the quality of medical decisions. Health Aff, 30, 4699-4706. Green, M.J., Peterson, S.K, Baker, M.W., Friedman, L.C., Harper, G.R., Rubinstein, W.S., Peters, J.A., & Mauger, D.T. (2005). Use of an educational computer program before genetic counseling for breast cancer susceptibility: effects on duration and content of counseling sessions. Genet Med, 7, 4, 221-229. Informed Medical Decisions Foundation. Definition of shared decision-making. Available at www.informedmedicaldecisions.org/what-is-shared-decision-making/ Joseph-Williams, N., Edwards, A., & Elwyn, G. (2014). Power imbalance prevents shared decision making. BMJ, 348. No audio.

Shared Decision-Making References – Lecture a (Cont’d – 1) Lee, C.N., Dominik, R., Levin, C.A., Barry, M.J., Cosenza, C., O’Connor, A.M., Mulley Jr., A.G., & Sepucha, K.R. (2010). Development of instruments to measure the quality of breast cancer treatment decisions. Health Expect, 13, 3, 258-272. Levinson, W., Kao, A., Kuby, A., & Thisted, R. A. (2005). Not all patients want to participate in decision making: a national study of public preferences. Journal of General Internal Medicine, 20, 6, 531–535. Mulley, A.G., Trimble, C., & Elwyn, G. (2012). Stop the silent misdiagnosis: patients' preferences matter. BMJ, 345, e6572. O’Connor, A.M., Bennett, C.L., Stacey, D., Barry, M., Col, N.F., Eden, K.B., Entwistle, V.A., Fiset, V., Holmes-Rovner, M., Khangura, S., Llewellyn-Thomas, H., & Rovner, D. (2009). Cochrane Database Syst Rev, 8, 3. Legare, F., Stacey, D, & IP Team. (2010) IP-SDM Model. Available at: https://decisionaid.ohri.ca/docs/develop/IP-SDM-Model.pdf Rao, J.K., Anderson, L.A., Inui, T.S., & Frankel, R.M. (2007). Communication interventions make a difference in conversations between physicians and patients: a systematic review of the evidence. Med Care, 45, 4, 340-349. No audio.

Shared Decision-Making References – Lecture a (Cont’d – 2) Shay, L.A., & Lafata, J.E. (2015). Where is the evidence? A systematic review of shared decision-making and patient outcomes. Medical Decision Making, 35, 1, 114-131. Stacey, D., Legare, F., Col, N.F., Bennett, C.L., Barry, M.J., Eden, K.B., Holmes-Rovner, M., Llewellyn-Thomas, H., Lyddiatt, A., Thomson, R., Trevena, L., & Wu, J.H. (2014). Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. Stacey, D., Legare, F., Pouliot S., Kryworuchko, J., Dunn, S. (2010). Shared decision making models to inform an interprofessional perspective on decision making: a theory analysis. Patient Educ Couns, 80, 2, 164-172. Street, R. & Jr, Haidet, P. (2011). How well do doctors know their patients? factors affecting physician understanding of patients' health beliefs. Journal of General Internal Medicine, 26, 21–27. Weston, W.W. (2001). Informed and shared decision-making: the crux of patient-centered care. CMAJ, 165, 438-439. No audio.

Shared Decision-Making References – Lecture a (Cont’d – 3) Charts, Tables, Figures 7.1 Figure: Kukafka, R. (2016). Why is SDM needed? Used with permission. 7.2 Figure: Kukafka, R. (2016). Steps in the SDM process. Used with permission. 7.3 Figure: Kukafka, R. (2016). Deliberation vs. determination. Used with permission. No audio.

Unit 7: Shared Decision-Making, Lecture a – Introduction This material was developed by Columbia University, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0006. No audio.