7

Engaging Patients, Families, and Communities

In June 2011, Alvin, a terminally ill patient with end-stage pulmonary fibrosis, was hospitalized for pneumonia. His doctor, a specialist in lung disease at a top academic medical center, gave Alvin 100 percent oxygen and powerful antibiotics and steroids, but his condition quickly deteriorated. Faced with the choice of intubation and a mechanical ventilator or palliative care, Alvin chose to forgo life support and spend his last days at home with his family. His family was given a prescription for morphine with little instruction on how to use it appropriately; when they tried to fill the prescription, several pharmacies refused. Despite the hospital’s orders for oxygen to be sent home, Alvin’s family found that the oxygen supplied was insufficient for his needs. The emergency medical technicians who took Alvin home offered only one solution—to bring him back to the hospital. Trying to honor his wishes, the family refused. Five hours after leaving the hospital, Alvin was in pain and struggling for breath. Since it was a Saturday evening, hospice personnel were off duty; Alvin’s family had to arrange for a private-duty nurse to help them care for him in his final hours. After he passed away, a hospice nurse finally arrived, apologized, and instructed his family on how to dispose of the remaining vial of morphine correctly. Alvin’s case highlights the critical importance of all members of the care team—family members, clinicians, and other health care providers—working together to overcome system complexity and poorly aligned incentives to ensure patient-centered



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7 Engaging Patients, Families, and Communities In June 2011, Alvin, a terminally ill patient with end-stage pulmo- nary fibrosis, was hospitalized for pneumonia. His doctor, a spe- cialist in lung disease at a top academic medical center, gave Alvin 100 percent oxygen and powerful antibiotics and steroids, but his condition quickly deteriorated. Faced with the choice of intubation and a mechanical ventilator or palliative care, Alvin chose to forgo life support and spend his last days at home with his family. His family was given a prescription for morphine with little instruction on how to use it appropriately; when they tried to fill the prescrip- tion, several pharmacies refused. Despite the hospital’s orders for oxygen to be sent home, Alvin’s family found that the oxygen supplied was insufficient for his needs. The emergency medical technicians who took Alvin home offered only one solution—to bring him back to the hospital. Trying to honor his wishes, the family refused. Five hours after leaving the hospital, Alvin was in pain and struggling for breath. Since it was a Saturday evening, hospice personnel were off duty; Alvin’s family had to arrange for a private-duty nurse to help them care for him in his final hours. After he passed away, a hospice nurse finally arrived, apologized, and instructed his family on how to dispose of the remaining vial of morphine correctly. Alvin’s case highlights the critical importance of all members of the care team—family members, clinicians, and other health care providers—working together to overcome system complexity and poorly aligned incentives to ensure patient-centered 189

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190 BEST CARE AT LOWER COST care, as well as the ways in which the health care system falls short on this critical dimension (Winakur, 2012). Clinicians and health care staff work tirelessly to care for their patients in an increasingly complex, inefficient, and stressful environment. However, the structure, incentives, and culture of the system in which they work are often—perhaps usually—poorly aligned to support their efforts to respond to patients’ needs as their core priority. Recognizing the imperative to center on the patient, a learning health care system is one in which patients and their families are key drivers of the design and operation of the learning process. When patients, their families, other caregivers, and the public are full, active participants in care, health, the experience of care, and economic outcomes can be substantially improved. Crossing the Quality Chasm underscores patient-centeredness as a core aim of the health care system, yet care often fails to meet this aim (IOM, 2001). Despite the Quality Chasm’s call to action more than a decade ago, patient-centered care still is not the norm, and users continue to find the health care system uncoordinated and stressful to navigate. As the complex- ity of the system continues to grow with advances in science (Chapter 2), patient engagement takes on increased importance as a means of ensuring that patients can find the right care for their individual characteristics, needs, preferences, and circumstances. In these complex situations, patients and clinicians both need to be involved for optimal care. Clinicians supply information and advice based on their scientific expertise in treatment and intervention options, along with potential outcomes. Patients, their families, and other caregivers bring personal knowledge on the suitability—or lack thereof—of different treat- ments for the patient’s circumstances and preferences. Information from both sources is needed to select the right care option. It is important to note that patient-centered care does not mean simply agreeing to every patient request. Rather, it entails meaningful engagement on the options avail- able in order to understand the patient and establish a dialogue between patient and clinician on the evidence and the decisions in play (Epstein et al., 2010; Fowler et al., 2011). The provision of patient-centered care can be complex and time-consuming, and requires broad involvement of the patient, the family, and the care team to consider all of the issues affecting the patient’s care. This chapter explores the ways in which a learning health care system can fill some of the gaps in orienting and coordinating the U.S. health care system around people’s needs. First, the chapter considers what is currently known about focusing the health care system on people’s needs and preferences, sets forth a vision for how the system could be improved

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ENGAGING PATIENTS, FAMILIES, AND COMMUNITIES 191 in this regard, and summarizes the benefits of moving toward that vision. The chapter then investigates how this knowledge can be applied at dif- ferent levels of the health care system, from the patient care experience to the broader system. Next is a discussion of communities of care and how they can incorporate those stakeholders not normally included in the health care system. The chapter concludes with recommendations for realizing the vision of a health care system that engages patients, families, and com- munities. Throughout, the discussion highlights ways in which a learning health care system can better incorporate patients, families, and the public in managing health and health care. CENTERING CARE ON PEOPLE’S NEEDS AND PREFERENCES Informed and engaged patients, invested in their own health care as well as in the improvement of the broader health care system, are crucial to a learning system. Patients bring unique and important perspectives on their own care, on the experience in health care organizations, and on the coordination and cooperation among various elements of their care. Unfortunately, patients, their families and other caregivers, and the public all too often are not meaningfully engaged in care or as partners in its improvement. Moving to the vision of a system centered on people’s needs and preferences has the potential to bring multiple benefits for patients, the health care system, and the nation. A Focus on the Patient As noted, more than 10 years after Crossing the Quality Chasm high- lighted the crucial role of patient-centered care, such care still is not the norm, and patients continue to find the health care system uncoordinated and stressful to navigate. A 2011 survey of public views of the health care system found that patients have difficulty accessing care, experience poor care coordination, and want a system that is more integrated and patient- centered. Seven of 10 adults surveyed reported difficulty in making doctor’s appointments when they needed them, getting advice over the phone, or receiving care after hours. Nearly half of adults reported problems with care coordination, notification of test results, and communications between primary care providers and specialists, and one-third said the health care system was poorly organized (Stremikis et al., 2011). The lack of patient focus is particularly evident in patient communica- tions, especially about care options. Surveys of patients who have recently made a medical decision have found that those patients often did not re- ceive critical information about the risks and benefits of the treatment and intervention choices under consideration (Fagerlin et al., 2010; Lee et al.,

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192 BEST CARE AT LOWER COST 2011, 2012; Sepucha et al., 2010). These patients also reported that their clinicians stressed the benefits of interventions more than they discussed the risks, and asked patients about their preferences only half of the time (Zikmund-Fisher et al., 2010). Because modern health care often offers multiple interventions for a given condition, each with its own benefits, side effects, and costs, identifying the most valuable intervention for each patient requires both that patients be well informed about the options and that clinicians be aware of their patients’ individual circumstances, prefer- ences, and needs. The lack of patient focus in the health care system also is evident in patient transitions between care settings. Patients often report that care transitions, such as being discharged from the hospital, are abrupt. Patients often receive little information about what the next steps are in their care, when they can resume activities, what side effects or complications they should monitor, or whom they can approach with questions about their recovery. In other cases, patients receive too much information at the time of discharge, stressing their ability to remember and apply this information over the transition period. As a result of poor transitions, almost one-fifth of hospitalized Medicare patients are rehospitalized within 30 days, often without seeing their primary care provider in the interim (Jencks et al., 2009). Communications between primary care practitioners and special- ists often lack critical information, and hospitals often either do not notify primary care practitioners when their patients are discharged or relay in- sufficient information (Bodenheimer, 2008). Transitions may be even less effective and more complex when patients’ needs extend beyond traditional health care to include a broader array of health and human services, such as long-term care; mental health and substance use care; and social, economic, and community services related to wellness and healthy lifestyles. Foundational Elements of Patient-Centered Care Part of the challenge is that the notion of patient-centeredness simply is not embedded in the care culture and often feels foreign, even disruptive, to clinicians unfamiliar with the concept (Berwick, 2009). Because invest- ments in moving toward patient-centered care currently are being made on a large scale, developing a working definition of patient- or person-centered care is a matter of some urgency, especially given that patient perspectives will soon be factored into Medicare value-based payments to hospitals.1 Absent this framework, it will be impossible to assess the progress of ini- tiatives toward the goal of improving patient focus. The difficulty is that 1  atient P Protection and Affordable Care Act, Public Law 111-148, 111th Congress (March 23, 2010).

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ENGAGING PATIENTS, FAMILIES, AND COMMUNITIES 193 multiple definitions of patient- or person-centered care exist, each captur- ing important aspects of this type of care. Moreover, the concept itself has multiple names, ranging from “patient-centered care,” to “patient- and family-centered care,” to “patient activation,” to “patient engagement,” to “public engagement.” Another challenge is determining who needs to be involved. Almost every person is a past, present, or future patient of the health care system. Moreover, each person often receives care from family caregivers, relatives, friends, and neighbors who support and assist those coping with both acute and chronic health problems, and who are vital to the patient throughout the care experience. While the term “patients” is used here for brevity, it always refers to patients, family and other caregivers, and the public. Similarly, the term “communities” includes all forms of community, such as those defined by geography, culture, disease or condition, occupation, and workplace. Recognizing the complexity of the terms involved, several individuals and organizations have developed definitions for patient-centered care. One advocate for promoting patient-centered care defines it as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one’s person, circumstances, and relationships in health care” (Berwick, 2009). The Institute for Patient- and Family-Cen- tered Care outlines four concepts that underlie patient-centered care: respect and dignity, information sharing, participation, and collaboration (Institute for Patient- and Family-Centered Care, 2011). The National Quality Fo- rum’s National Priorities Partnership characterizes patient-­ entered care as c health care that “honors each individual patient and family, offering voice, control, choice, skills in self-care, and total transparency, and that can and does adapt readily to individual and family circumstances, and to differing cultures, languages, and social backgrounds” (NPP, 2010). This chapter builds on the definition of patient-centered care outlined in Crossing the Quality Chasm: “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensur- ing that patient values guide all clinical decisions” (IOM, 2001, p. 40). The concept encompasses multiple dimensions, including respect for patients’ values, preferences, and needs; coordination and integration of care; infor- mation, communication, and education; physical comfort; emotional sup- port; and involvement of family and friends. Crossing the Quality Chasm outlines several principles to help the system provide this kind of care: care should be based on continuous healing relationships, care should be customized according to patient needs and values, the patient should be the source of control, knowledge should be shared and information should flow freely, information should be provided to patients transparently, and

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194 BEST CARE AT LOWER COST the patient’s needs should be anticipated (IOM, 2001). In short, the patient should be considered in all aspects of care and care delivery. Benefits of Patient-Centered Care A growing body of evidence highlights the potential benefits of patient- centered care for clinical outcomes, health, satisfaction among health care workers, and providers’ financial performance. For example, several hos- pitals that encourage patient-centered care by paying greater attention to patient needs and preferences, as well as care coordination, have found that adverse events decrease, employee retention increases, operating costs decrease, malpractice claims decline, lengths of stay are shorter, and the hospital’s costs per case decrease (Charmel and Frampton, 2008; Epstein et al., 2010). Patient and family involvement in decision making has been associated in primary care settings with reduced pain and discomfort, faster recovery in physical health, and improvements in emotional health (Stewart et al., 2000). Similarly, heart attack patients who did not receive patient-centered care were found to have worse long-term outcomes, such as overall health and likelihood of experiencing chest pains, than patients who received such care (Fremont et al., 2001). A study of patient-centered nursing interven- tions for cancer patients found that the interventions were correlated with improved patient self-representation, optimism, and sense of well-being (Radwin et al., 2009). Patient-centered care also has been found to correlate with a patient’s ability to undertake personal health maintenance and adhere to complex treatment regimens. An observational study of Commonwealth of Massa- chusetts employees found that physicians’ knowledge of their patients and patients’ trust in their physicians strongly influenced whether patients com- pleted the recommended treatment regimen (Safran et al., 1998). Similarly, HIV patients who reported that their clinician knew them “as a person” had higher odds of receiving and completing highly active antiretroviral therapy, as well as better health outcomes, relative to other HIV patients (Beach et al., 2006). These studies underscore the potential role of patient- centered care in improving the health outcomes from a therapy or interven- tion that relies on patient self-management, including many therapies for chronic diseases. In addition, patient-oriented care has been associated with decreased utilization of resources. Studies have found that patient-centered communi- cation in primary care visits correlates with fewer diagnostic tests and refer- rals (Epstein et al., 2005; Stewart et al., 2000). A similar study found that patients who received less patient-centered care incurred 51 percent higher annual charges relative to patients who received more patient-centered care

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ENGAGING PATIENTS, FAMILIES, AND COMMUNITIES 195 (Bertakis and Azari, 2011). Further, well-informed patients often choose less aggressive and costly therapies; one study found that informed patients were up to 20 percent less likely than other patients to choose elective sur- gery (O’Connor et al., 2009; Stacey et al., 2011). Yet not all care delivered in the name of patient-centeredness reduces costs or improves outcomes. For example, one study found that patient- centeredness was associated with better outcomes but also higher costs (Bechel et al., 2000). Other studies have yielded mixed results with respect to cost, quality, and value for care models that aim to implement different aspects of patient-centeredness, such as disease management and care coor- dination programs (Nelson, 2012; Peikes et al., 2009). This inconsistency of results stems in part from the difficulty of identifying what truly constitutes patient-centered care (Epstein and Street, 2011; Hudon et al., 2011). Con- fusion about the implications of patient-centered care can stymie the efforts of well-meaning individuals and organizations, producing changes that are superficial, fail to address underlying challenges, and add little value to the experience. In the name of patient-centeredness, for example, some health care organizations have adopted luxury, hotel-like amenities; added new technology; or renovated their facilities. Although some of these initiatives may enhance the patient’s experience, they do not achieve the true goals of patient-centered care and may increase costs while not improving care qual- ity or outcomes. Patient-centered care must be implemented in a way that directly addresses the patient’s needs and preferences and supports those goals most important to improving quality, health, and value. Moreover, establishing a causal link between different aspects of patient engagement and ultimate outcomes can be difficult. For example, several studies have shown a link between patient-centered care and measures of patient experience, which in turn have been linked to better health out- comes (Beach et al., 2006; Browne et al., 2010; Mead and Bower, 2002; Stewart, 1995). Yet researchers are only beginning to understand the chain of causality through which patient-centered care techniques, such as com- munication, contribute to better health outcomes (Epstein and Street, 2011; Street et al., 2009). Additional research is needed to understand how dif- ferent patient-centered techniques produce direct and indirect outcomes— from physical and emotional health, to the ability to manage one’s care, to improved decision-making ability. Conclusion 7-1: Improved patient engagement is associated with better patient experience, health, and quality of life and better economic outcomes, yet patient and family participation in care decisions remains limited.

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196 BEST CARE AT LOWER COST Related findings: • Patients often are insufficiently involved in care decisions. Fewer than half of patients receive clear information on the benefits and trade-offs of the treatments for their condition, and fewer than half are satisfied with their level of control in medical decision making (see also Chapter 2). • Patient-centered care has been correlated with better health care outcomes and quality of life, as well as other benefits. The use of patient-centered care in a primary care setting has been associ- ated with reduced pain and discomfort, faster recovery in physical health, and improvements in emotional health. • If implemented properly, meaningful engagement of patients in their own care has the potential to reduce costs. For example, it has been reported that informed patients are up to 20 percent less likely than other patients to choose elective surgery. ENGAGING PATIENTS AS ACTIVE PARTICIPANTS IN THEIR CARE Patients and the public across many diverse demographic groups have shown a desire to become more involved in their care and more informed about their health (Frosch et al., 2012; President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Re- search, 1982). For example, 80 percent of Internet users now seek health information online, making this the third most popular Internet activity (Fox, 2011). After a doctor’s appointment, individuals seek out informa- tion on diagnoses, tests, and prescriptions to learn more (Diaz et al., 2002). While this online information is variable in quality and should be viewed with caution, this growing interest in health represents an opportunity to increase patients’ involvement in their own care, in the care of their loved ones, and in the improvement of the overall system. It further highlights new roles for health professionals in partnering with patients to share reliable online sources of health information (Alston and Paget, 2012). Moreover, the development of new models of care delivery, such as patient- centered medical homes, health homes, and accountable care organizations (ACOs), offers opportunities to incorporate patient engagement. This sec- tion explores patient engagement at multiple levels—from the personal rela- tionship of patients with their health care providers, to patients’ experience while being treated in a health care organization, to the interaction of pa- tients with the broader system, to patients’ management of their own care.

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ENGAGING PATIENTS, FAMILIES, AND COMMUNITIES 197 Engaging Patients at the Care Delivery Level Increased patient engagement in individual interactions with practitio- ners is needed. Some studies have found that patients and clinicians have differing views on the importance of different health goals and health care risks (Lee et al., 2010a,b). Other studies have found that physicians have inaccurate perceptions of their patients’ health beliefs, assuming that their patients’ beliefs are more aligned with their own than is actually the case. This misperception improves when patients are able to participate actively in the consultation (Johnson et al., 2010; Street and Haidet, 2011). How- ever, studies have found that physicians tend to interrupt patients within 15 seconds of their beginning to speak at the outset of a visit, while uninter- rupted patients tend to conclude their remarks in under a minute (Beckman and Frankel, 1984). These studies highlight the need to prepare health care professionals with communication skills and techniques that optimize op- portunities for patient engagement. Metrics have been developed for quantifying a patient’s activation, defined as the capability to participate in the care process (Hibbard, 2004; Hibbard et al., 2004). These metrics make it possible both to assess whether interventions improve activation and to customize care based on a patient’s activation level. Evidence demonstrates that increasing a patient’s activa- tion correlates with improvement in a variety of self-management behaviors (Hibbard et al., 2007; Mosen et al., 2007) and that tailoring interventions to a patient’s level of activation can improve the interventions’ impact (Hibbard et al., 2009). Evidence also suggests that patient activation and self-management can be enhanced through such strategies as improved communication, motivational interviewing, shared decision making, ready access to personal health information and providers, and increased focus on goals that matter to patients and their families. Communication Patients, their families, and other caregivers can bring useful and often critically important knowledge to bear on care if they are invited to do so. Patients often are unable to discuss all of their concerns in a single visit. Some interventions to remedy this limitation are straightforward; one study found that simply asking patients whether there was “something else” to discuss instead of “anything else” reduced the number of unmet concerns by almost 80 percent (Heritage et al., 2007). Moreover, patients bring a different perspective to the encounter than clinicians and will introduce different information. For example, patients on statin drugs were far more likely than their clinician to initiate the discussion of symptoms potentially related to the prescription (Golomb et al., 2007).

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198 BEST CARE AT LOWER COST A variety of interventions are aimed at improving the state of patient- clinician communication (Maurer et al., 2012). Opportunities to improve patient-centered communication skills exist throughout all levels of health professions education, from degree to continuing education (Levinson et al., 2010). Other tools include patient coaching and question checklists, which are designed to assist patients in communicating with their clinicians. In one study, coaching and the use of checklists were shown to increase the number of questions patients asked and were associated with a mod- est improvement in patient health outcomes (Kinnersley et al., 2007). The implementation of these tools has yielded some success in improving clini- cian communication behaviors, as well as patient knowledge and satisfac- tion, although evidence is mixed on the ultimate impact on patient health outcomes (Coulter and Ellins, 2006). Communication tools need to be customized to patients’ circumstances, especially their health literacy. Health literacy refers to an individual’s abil- ity to obtain, understand, and apply health information to make appropri- ate health decisions. Given the complexity of the field, even highly educated people may have difficulty finding and understanding health information and applying it to their own care or that of their loved ones (IOM, 2004). Ensuring that patients have the tools they need to manage health informa- tion is critical, as lower levels of health literacy have been associated with increased hospitalizations, greater use of emergency rooms, lower use of preventive services, and limited ability to manage complex treatment regi- mens (Berkman et al., 2011). Given that effective communication requires effort from two parties, those who produce health care information for patients must consider how that information will be received and used by patients (Eckman et al., 2012). Several useful communication techniques, such as motivational interviewing, can promote certain health behaviors and adherence to treatment regimens by drawing out the patient’s motiva- tion for change (Rollnick et al., 2008). There is also a need for research on interventions that can improve a patient’s ability to manage health informa- tion (Berkman et al., 2011). Shared Decision Making While informing patients about options is important, true patient- centered care requires a new model of decision making in which respon- sibility is shared between patient and clinician. Implementing this model will require a shift toward health care in which clinicians and patients work together to manage complex conditions, and make decisions on the basis of not only the best scientific evidence but also the patient’s biological characteristics, preferences, values, and life circumstances. Such a decision- making model is increasingly important for the growing number of clinical

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ENGAGING PATIENTS, FAMILIES, AND COMMUNITIES 199 situations in which there are multiple care options, each with different benefits and potential harms. In these situations, where trade-offs will have to be considered, clinicians will need to discuss the risks and benefits of competing diagnostic and treatment options with patients and their caregiv- ers (Collins et al., 2009). In addition to enhanced communication techniques, tools for promot- ing shared decision making include decision aids. Decision aids provide balanced information on diagnostic and treatment options, including risks and potential outcomes, and help patients consider what factors are most important to their decision. The goal is to help patients identify the di- agnostic technology or treatment that best meets their needs, goals, and circumstances. Studies of such tools have found that they increase patients’ knowledge and understanding of benefits and risks and encourage them to participate in decisions (Arterburn et al., 2011; Belkora et al., 2012; O’Connor et al., 2004, 2007a,b; Solberg et al., 2010; Stacey et al., 2011). Several organizations, including the International Patient Decision Aids Standards Collaboration, have developed standards against which to vali- date the quality of decision aids and ensure that they are accurate, unbiased, and understandable. The concept of patient-centered care entails customizing care according to patient preferences along all dimensions, including the level of involve- ment in decision making. Some patients will be interested in playing a strong role in care decisions, while others may want to play a less active role. Evidence suggests that the system currently does not allow patients to realize their desired level of participation; in one study, fewer than half of patients reported they had achieved their preferred level of control in decision making (Degner et al., 1997). Several studies confirm that while most patients wish to be asked their opinions and be offered choices in their care, patients differ in how they would like to be involved in final care deci- sions (Chung et al., 2011; Deber et al., 2007; Fineberg, 2012; Levinson et al., 2005; Solberg et al., 2009). These studies illustrate the complex role of patient autonomy in the provision of patient-centered care and confirm the variability in the preferences of individual patients and patient populations in this aspect of care. They also signal that patient satisfaction requires patient-clinician communication that not only shares the appropriate clini- cal information for each patient, but also provides the appropriate amount of information and degree of autonomy in acting on the information. These findings suggest as well that it is important for clinicians to be working in an environment where they can function as careful listeners and coaches, as well as experts in their field. The implementation of new communication and decision-making para- digms will need to be customized for different patient populations. For vulnerable populations, including low-income individuals, racial and ethnic

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216 BEST CARE AT LOWER COST community-based interventions to improve health outcomes, in- cluding strategies related to the assessment and use of web-based tools. • Public and private payers should incorporate population health improvement into their health care payment and contracting poli- cies and accountability measures. • Health economists, health service researchers, professional spe- cialty societies, and measure development organizations should continue to improve measures that can readily be applied to assess performance on both individual and population health. For many patients, care can be fragmented and uncoordinated, whether they are transitioning from the hospital to a community setting or between two different clinicians. As patient needs have grown more complex, focus- ing on coordination and communication across all of a patient’s health care providers has become increasingly crucial. These coordination and commu- nication needs may be more acute when patients require services beyond the traditional health care system, such as social and community services, for managing their condition. Recommendation 6 outlines actions that need to be taken to improve care transitions and coordination to provide seamless care for patients. Recommendation 6: Care Continuity  mprove coordination and communication within and across organiza- I tions. Payers should structure payment and contracting to reward ef- fective communication and coordination between and among members of a patient’s care team. Strategies for progress toward this goal: • Health care delivery organizations and clinicians, partnering with patients, families, and community organizations, should develop coordination and transition processes, data sharing capabilities, and communication tools to ensure safe, seamless patient care. • Health economists, health service researchers, professional specialty societies, and measure development organizations should develop and test metrics with which to monitor and evaluate the effective- ness of care transitions in improving patient health outcomes. • Public and private payers should promote effective care transitions that improve patient health through their payment and contracting policies.

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ENGAGING PATIENTS, FAMILIES, AND COMMUNITIES 217 Given the advantages that accrue from involving patients and commu- nities in health care, their inclusion is a goal for a learning health care sys- tem. Challenges are entailed in promoting this involvement, from changing the existing culture of medicine to creating metrics that accurately measure involvement. As noted in this chapter, there are differences between patient involvement in care and measures such as patient satisfaction. However, these challenges do not prevent a focus on patients in care, and each can be overcome to allow for a health care system that continually improves patient care. REFERENCES AAFP (American Academy of Family Physicians, AAP (American Academy of Pediatrics), ACP (American College of Physicians), and (AOA) American Osteopathic Association. 2007. Joint principles of the patient-centered medical home. http://www.pcpcc.net/content/ joint-principles-patient-centered-medical-home (accessed August 31, 2012). Aligning Forces for Quality. 2012. AF4Q alliance overview. http://forces4quality.org/af4q- alliances-overview (accessed May 15, 2012). Alston, C., and L. Paget. 2012. Communicating evidence in health care: Engaging patients for improved health care decisions. http://iom.edu/~/media/Files/Activity%20Files/ Quality/VSRT/IC%20Meeting%20Docs/ECIC%2006-07-12/Lyn%20Paget%20and%20 Chuck%20Alston.pdf (accessed August 31, 2012). Arterburn, D. E., E. O. Westbrook, T. A. Bogart, K. R. Sepucha, S. N. Bock, and W. G. Weppner. 2011. Randomized trial of a video-based patient decision aid for bariatric surgery. Obesity (Silver Spring) 19(8):1669-1675. Balik, B., J. Conway, L. Zipperer, and J. Watson. 2011. Achieving an exceptional patient and family experience of inpatient hospital care. Cambridge, MA: Institute for Healthcare Improvement. Beach, M. C., J. Keruly, and R. D. Moore. 2006. Is the quality of the patient provider rela- tionship associated with better adherence and health outcomes for patients with HIV? Journal of General Internal Medicine 21(6):661-665. Bechel, D. L., W. A. Myers, and D. G. Smith. 2000. Does patient-centered care pay off? Joint Commission Journal on Quality Improvement 26(7):400-409. Beckman, H. B., and R. M. Frankel. 1984. The effect of physician behavior on the collection of data. Annals of Internal Medicine 101(5):692-696. Belkora, J. K., S. Volz, A. E. Teng, D. H. Moore, M. K. Loth, and K. R. Sepucha. 2012. Impact of decision aids in a sustained implementation at a breast care center. Patient Education and Counseling 86(2):195-204. Bergeson, S. C., and J. D. Dean. 2006. A systems approach to patient-centered care. Journal of the American Medical Association 296(23):2848-2851. Berkman, N. D., S. L. Sheridan, K. E. Donahue, D. J. Halpern, A. Viera, K. Crotty, A. Holland, M. Brasure, K. N. Lohr, E. Harden, E. Tant, I. Wallace, and M. Viswanathan. 2011. Health literacy interventions and outcomes: An updated systematic review. Rockville, MD: RTI International/University of North Carolina Evidence-based Practice Center. Berry, L. L., A. M. Mirabito, and W. B. Baun. 2010. What’s the hard return on employee wellness programs? Harvard Business Review 88(12):104-112, 142. Bertakis, K. D., and R. Azari. 2011. Patient-centered care is associated with decreased health care utilization. Journal of the American Board of Family Medicine 24(3):229-239.

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