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Carman - Patient And Family Engagement

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preface_schema: ‘1.0’ title: ‘By Kristin L. Carman, Pam Dardess, Maureen Maurer, Shoshanna Sofaer, Karen Adams, Christine Bechtel,’ source_type: ‘Academic’ publisher: ‘Ey’ publishing_date: ‘2012’ authors: [‘By Kristin L. Carman’, ‘Pam Dardess’, ‘Maureen Maurer’, ‘Shoshanna Sofaer’, ‘Karen Adams’, ‘Christine Bechtel’, ‘Jennifer Sweeney’, ‘Family Engagement’, ‘A Framework For Understanding’, ‘The Elements’] available_at: ‘https://doi.org/10.1377/hlthaff.2012.1133’ keywords: [‘engagement’, ‘health’, ‘care’, ‘patient’, ‘patients’, ‘framework’, ‘system’, ‘policy’] abstract: ‘Patient and family engagement offers a promising pathway toward better-quality health care, more-efficient care, and improved population health. Since definitions of patient engagement and conceptions of how it works vary, we propose a framework. We first present the forms engagement can take, ranging from consultation to partnership. We discuss the levels at which patient engagement can occur across the health care system, from the direct care setting to incorporating patient engagement into organizational design, governance, and policy making. We also discuss the factors that influence whether and to what extent engagement occurs. We explore the implications of our multidimensional framework for the development of interventions and policies that support patient and family engagement, and we offer a research agenda to investigate how such engagement leads to improved outcomes. P atient engagement has been called a critical part of a continuously learn- ing health system,1 a necessary con- dition for the redesign of the health care system,2 the “holy grail” of health care,3 and the next “blockbuster drug of the century.”4 But definitions of patient engagement and conceptions of how it improves care vary consid- erably. Angela Coulter’s well-known definition focuses on the relationship between patients and health care providers as they work together to “promote and support active patie

s care vary consid- erably. Angela Coulter’s well-known definition focuses on the relationship between patients and health care providers as they work together to “promote and support active patient and pub- lic involvement in health and healthcare and to strengthen their influence on healthcare deci- sions, at both the individual and collective levels.”5 A model of public engagement developed by James Conway at the Institute for Healthcare Improvement is organized around the settings in which patient engagement occurs: during the care experience, within the microsystem of the clinic or ward, within the health care organiza- tion, and within the larger community.6 And the Center for Advancing Health’s engagement behavior framework focuses on behavior, defin- ing engagement as “actions people take for their health and to benefit from health care”7 and pro- viding a list of patient-initiated engagement actions. Adding to the confusion, the term patient en- gagement is also used synonymously with patient activation and patient- and family-centered care. Although the concepts are related, they are not identical. Patient activation—an “individual’s knowledge, skill, and confidence for managing his/her own health and health care”8(p377)—is one aspect of an individual’s capacity to engage in that care. But this term does not address the individual’s external context, nor does it focus on behavior. “Patient- and family-centered care” is a broader term that conveys a vision for what health care should be: “a partnership among’

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s external context, nor does it focus on behavior. “Patient- and family-centered care” is a broader term that conveys a vision for what health care should be: “a partnership among’

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By Kristin L. Carman, Pam Dardess, Maureen Maurer, Shoshanna Sofaer, Karen Adams, Christine Bechtel, and Jennifer Sweeney Patient And Family Engagement: A Framework For Understanding The Elements And Developing Interventions And Policies ABSTRACT Patient and family engagement offers a promising pathway toward better-quality health care, more-efficient care, and improved population health. Since definitions of patient engagement and conceptions of how it works vary, we propose a framework. We first present the forms engagement can take, ranging from consultation to partnership. We discuss the levels at which patient engagement can occur across the health care system, from the direct care setting to incorporating patient engagement into organizational design, governance, and policy making. We also discuss the factors that influence whether and to what extent engagement occurs. We explore the implications of our multidimensional framework for the development of interventions and policies that support patient and family engagement, and we offer a research agenda to investigate how such engagement leads to improved outcomes. P atient engagement has been called a critical part of a continuously learn- ing health system,1 a necessary con- dition for the redesign of the health care system,2 the “holy grail” of health care,3 and the next “blockbuster drug of the century.”4 But definitions of patient engagement and conceptions of how it improves care vary consid- erably. Angela Coulter’s well-known definition focuses on the relationship between patients and health care providers as they work together to “promote and support active patient and pub- lic involvement in health and healthcare and to strengthen their influence on healthcare deci- sions, at both the indivi

oviders as they work together to “promote and support active patient and pub- lic involvement in health and healthcare and to strengthen their influence on healthcare deci- sions, at both the individual and collective levels.”5 A model of public engagement developed by James Conway at the Institute for Healthcare Improvement is organized around the settings in which patient engagement occurs: during the care experience, within the microsystem of the clinic or ward, within the health care organiza- tion, and within the larger community.6 And the Center for Advancing Health’s engagement behavior framework focuses on behavior, defin- ing engagement as “actions people take for their health and to benefit from health care”7 and pro- viding a list of patient-initiated engagement actions. Adding to the confusion, the term patient en- gagement is also used synonymously with patient activation and patient- and family-centered care. Although the concepts are related, they are not identical. Patient activation—an “individual’s knowledge, skill, and confidence for managing his/her own health and health care”8(p377)—is one aspect of an individual’s capacity to engage in that care. But this term does not address the individual’s external context, nor does it focus on behavior. “Patient- and family-centered care” is a broader term that conveys a vision for what health care should be: “a partnership among doi: 10.1377/hlthaff.2012.1133 HEALTH AFFAIRS 32, NO. 2 (2013): 223–231 ©2013 Project HOPE— The People-to-People Health Foundation, Inc. Kristin L. Carman (kcarman@ air.org) is a managing director in the Health Program at the American Institutes for Research in Washington, D.C. Pam Dardess is a senior research analyst at the American Institutes for Research in Chapel Hill, North Carolina. Maureen Maurer is a senior researcher at the American Institutes for Research in Chapel Hill. Shoshanna Sofaer is the Robert P. Luciano Professor of Health Care

esearch in Chapel Hill, North Carolina. Maureen Maurer is a senior researcher at the American Institutes for Research in Chapel Hill. Shoshanna Sofaer is the Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College, City University of New York, in New York City. Karen Adams is vice president of national priorities at the National Quality Forum, in Washington, D.C. Christine Bechtel is vice president of the National Partnership for Women and Families, in Washington, D.C. Jennifer Sweeney is director of consumer engagement and community outreach at the National Partnership for Women and Families. FEBRUARY 2013 32:2 Health Affairs 223 Evidence & Potential

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practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.”9(p7) We define patient and family engagement as pa- tients, families, their representatives, and health professionals working in active partnership at various levels across the health care system— direct care, organizational design and gover- nance, and policy making—to improve health and health care. Although we use the term pa- tient engagement for simplicity’s sake, we recog- nize that those who engage and are engaged include patients, families, caregivers, and other consumers and citizens. Several circumstances encourage a growing emphasis on patient engagement. First, work related to patient- and family-centered care and shared decision making both reflects and accelerates the shifting roles of patients and fam- ilies in health care as they become more active, informed, and influential.9,10 Second, a growing body of evidence suggests that patient engagementcan lead to better health outcomes,11 contribute to improvements in qual- ity and patient safety,12 and help control health care costs.13 Third, vir

ng body of evidence suggests that patient engagementcan lead to better health outcomes,11 contribute to improvements in qual- ity and patient safety,12 and help control health care costs.13 Third, virtually every discussion about the US health care system begins by noting that spending is spiraling upward while quality lags behind. In the search for solutions, gaining ground is the belief that patients are at the core of our system and, as such, are part of the solution.14 In this article we propose a model of patient engagement that presents the forms patient en- gagement can take, from consultation to part- nership and what we call shared leadership, which includes decision-making authority. Our model also examines the levels at which patient engagement can occur throughout the health care system, in direct care, organizational design and governance, and policy making.We also ex- amine the factors15 that influence patients’ will- ingness and ability to engage and the extent of their engagement. The factors that influence the ability of clinicians, health care organizations, and policy makers to create opportunities for engagement are also important, but considera- tion of them is beyond the scope of this article. We conclude by exploring the implications of our multidimensional framework for the de- velopment of interventions and policies that support patient engagement. We also present a research agenda to investigate the pathways by which engagement leads to improved outcomes. This framework was developed in conjunction with patient and family representatives, re- flecting the principle of working with, rather than doing “to” or “for” patients. We note that our model is not a static one. The field of patient engagement is nascent; as it evolves, so will our model. But we hope that the framework in its current form will help inform the development of interventions and policies that support pa- tient and family engagement. As shown in Exhibit 1, our mult

r model. But we hope that the framework in its current form will help inform the development of interventions and policies that support pa- tient and family engagement. As shown in Exhibit 1, our multidimensional framework includes three critical aspects of pa- tient engagement. First, engagement activities range along a continuum,16 from consultation to partnership and shared leadership. Second, engagement occurs at different levels: It is not confined to individual health behavior or direct care interactions; it also occurs in organizational design and governance and in policy making. Third, multiple factors affect the willingness and ability of patients to engage. The Continuum Of Engagement Patient engagement can be characterized by how much information flows between patient and provider, how active a role the patient has in care decisions, and how involved the patient or pa- tient organization becomes in health organiza- tion decisions and in policy making. At the con- tinuum’s lower end, patients are involved but have limited power or decision-making author- ity. Providers, organizations, and systems define their own agendas and then seek patients’ input. Information flows to patients and then back to the system. At the continuum’s higher end, engagement is characterized by shared power and responsibil- ity, with patients being active partners in defin- ing agendas and making decisions. Information flows bidirectionally throughout the process of engagement, and decision-making responsibil- ity is shared. Consider this example concerning patients’ electronic health records. At the consultation end of the engagement continuum, clinicians may use the records to provide information to patients—such as printouts of lab results—but patients cannot access the information directly. At the midpoint of the continuum, involvement, patients have direct access to their records, in- cluding notes from clinicians and the health care delivery system, but they cann

information directly. At the midpoint of the continuum, involvement, patients have direct access to their records, in- cluding notes from clinicians and the health care delivery system, but they cannot contribute or correct information. In contrast, at the partnership end of the con- tinuum, patients have direct access to their re- cords, are able to see notes from clinicians and the system, and can add or edit information. The record reflects the entire experience of care from the perspectives of both the patient and the clinicians, and care decisions can be made Evidence & Potential 224 Health Affairs FEBRUARY 2013 32:2

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collaboratively, with all relevant information included. In describing patient engagement in terms of a continuum, we are not suggesting that the goal is always to move toward engagement at the higher end of the continuum. Such engagement is not necessarily better for every patient in every set- ting. Clinicians, delivery systems, and policy makers cannot assume that patients have certain capabilities, interests, or goals, nor can they dic- tate the pathway to achieving patients’ goals. However, the range of opportunities along the continuum is best determined based on the topic at hand and defined and created with patients’ participation. But even if greater engagement is not ideal for all people in all situations, more and more pa- tients will want—even demand—greater involve- ment in care and policy decisions. With shared power and responsibility comes the potential for better, more patient-centered outcomes. For ex- ample, recent work related to patients with car- diac arrhythmia shows that patients who expe- rienced shared decision making chose far less invasive treatments compared to those who did not.17 Engagement At Multiple Levels Direct Care At the level of direct care, engage- ment integrates patients’ values, experiences, and perspectives related to prevention, diagno- sis, and treatment, including managing t

ltiple Levels Direct Care At the level of direct care, engage- ment integrates patients’ values, experiences, and perspectives related to prevention, diagno- sis, and treatment, including managing the pa- tient’s health and selecting health care coverage and providers. Although we refer to this level as direct care, engagement here need not involve interaction with clinicians. Patients may also en- gage with a range of health-related resources and groups to initiate or sustain personal health practices—for instance, seeking information about health conditions and treatments, partici- pating in community-based self-management support groups, or using ratings of provider quality. Patient engagement at this level ranges from a patient’s simply receiving information to being an active partner in the care team, setting goals, making decisions, and proactively managing his or her health. In engagement at the partner- ship end of the continuum, patients communi- cate with clinicians about their health situation, understand the risks and benefits associated with care choices, ask questions, and access and help create their medical records. Clinicians give patients timely, complete, and understandable information; elicit patients’ val- ues, beliefs, and risk tolerance regarding care choices; give patients encouragement and sup- port; and involve family and friends according to the patient’s wishes. For example, a patient with localized prostate cancer might go online to look for evidence about treatment options and associated clinical and quality-of-life considerations. Next, the pa- tient might discuss important considerations with his physician and family. Then the patient, family, and physician would work together to develop and initiate a treatment approach that considers the patient’s and family’s emotional anxiety about cancer, treatment preferences and goals, life circumstances, values, and risk tolerance for adverse outcomes. Organizational Design And

considers the patient’s and family’s emotional anxiety about cancer, treatment preferences and goals, life circumstances, values, and risk tolerance for adverse outcomes. Organizational Design And Governance At the level of organizational design and gover- nance, engagement integrates patients’ values, experiences, and perspectives into the design and governance of health care organizations such as hospitals, accountable care organiza- tions, clinics, and nursing homes.4,18 Patients Exhibit 1 A Multidimensional Framework For Patient And Family Engagement In Health And Health Care SOURCE Authors’ analysis. NOTE Movement to the right on the continuum of engagement denotes increasing patient participation and collaboration. FEBRUARY 2013 32:2 Health Affairs 225

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partner with organizational leaders, front-line managers, and clinicians to plan, deliver, and evaluate care. Patients also help design health care facilities; serve on hospitals’ patient and family advisory councils; participate in the de- sign and execution of quality improvement proj- ects; and assist with staff hiring, training, and development.19 At the partnership end of the continuum, pa- tients help set agendas, determine priorities, and share decision-making authority. Patients are engaged early and meaningfully and are not token or single representatives. Forexample, at the Dana-Farber Cancer Institute, patients and family members have participated as decision- makingmembersin continuousquality improve- ment teams, taken part in hiring decisions, and developed and provided staff training.20 Policy Making At the policy-making level, en- gagement focuses on developing, implementing, and evaluating national, state, and local health care policy and programs. Patients’ engagement in policy, which is often described as “citizen” or “public” engagement, helps ensure that the health care system writ large is oriented around and responsive to patients’ perspectives. Patien

policy, which is often described as “citizen” or “public” engagement, helps ensure that the health care system writ large is oriented around and responsive to patients’ perspectives. Patients collaborate with community leaders and policy makers—for instance, representatives from governments, health plans, and employ- ers—to solve community and social problems, shape health care policy, and set priorities for the use of resources. Patients also participate in health and clinical research. At this level, en- gagementmay includeindividual patientsas well as representatives of consumer organizations who speak on behalf of a general constituency. Ideally, at the partnership end of the con- tinuum for this level, patients or their represent- atives set priorities and make policy and pro- gram decisions. However, it is still rare for patients to have more than a token amount of power and influence. An example that moves toward this higher level of partnership is the Health Information Technology Policy Committee, established by the American Recovery and Reinvestment Act of 2009. This federal advisory committee desig- nates three of its twenty seats for consumer representatives to make recommendations on policies that promote the adoption and “mean- ingful use” of health information technology, including its use to promote patient and family engagement. Factors That Influence Engagement Numerous factors influence whether and to what extent patients are able to engage at different levels and at different points along the continuum. In our framework (Exhibit 1) we have grouped these factors into three categories: those related to patients, organizations, and so- ciety. Each set of factors acts on its own and in conjunction with the other sets to affect patients’ actions and engagement. The factors we include in the framework and discuss here are illustra- tive, not exhaustive. The Patient Individual factors that can affect patients’ motivation, willingn

’ actions and engagement. The factors we include in the framework and discuss here are illustra- tive, not exhaustive. The Patient Individual factors that can affect patients’ motivation, willingness, and ability to engage within and across different levels include patients’ knowledge, attitudes, and beliefs, such as their beliefs about the patient role; their ex- perience with the health care system; their self- efficacy; and their functional capacity, such as their health literacy, health status, and function- ing.21,22 Vulnerable populations—for example, people at low income levels, those who have lim- ited English proficiency, and the elderly—may face additional challenges, such as low health literacy or cognitive decline, when trying to engage.23,24 The Organization An organization’s charac- teristics influence patients’ ability to engage in it. Hospitals, physician practices, accountable care organizations, governments, and other or- ganizations can encourage patient engagement by demonstrating that patients’ participation and leadership are central to the achievement of improvement goals25 and by responding pos- itively to patients’ efforts.21 Organizational pol- icies or practices also affect how easy it is for patients to be active partners.25 Policies and practices that positively influence patient engagement in direct care include open family presence policies—that is, hospital poli- cies that enable families to visit twenty-four hours a day;26 bedside rounding—that is, con- ducting physician and interdisciplinary rounds at the patient’s bedside;27 having nurses who are coming on and going off duty give their change of shift report at the patient’s bedside;28 patient- centered discharge planning;29 and electronic health records that patients can access and edit.30 Organizational policies and practices can fur- ther promote engagement by creating expec- tations that patients will serve as advisers and decision makers, including on

patients can access and edit.30 Organizational policies and practices can fur- ther promote engagement by creating expec- tations that patients will serve as advisers and decision makers, including on quality improve- ment teams, patient safety and error commit- tees, and patient- and family-centered care councils. Society The third set of factors recognizes that patients and organizations operate within a broader social and political environment and are influenced by social norms; purchasers’ reg- ulations; and national, state, and local policies. Social and community norms influence whether patients view themselves as able to contribute to improving their care, what organizations they Evidence & Potential 226 Health Affairs FEBRUARY 2013 32:2

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interact with, and overall policy making. Purchasers’ policies, reimbursement mecha- nisms, and benefit designs—such as having lower or no copayments for office visits to man- age chronic conditions—can influence patients’ behavior in seeking health care and making de- cisions about their care.31 They can also indicate to organizations where resources should be allo- cated, such as to support patient engagement in discharge planning. Policy makers can also create mechanisms by which patients can provide input and help shape public policy, such as public deliberation, town hall meetings, public hearings, or regula- tory comment processes. Similarly, foundations, nonprofit organizations, and government agen- cies can create funding mechanisms requiring and supporting patient participation in societal decisions and priority setting. In addition, legislative rules or regulations may specifically spur patients’ participation in health care. An example here is the mandate in Massachusetts for hospitals to establish patient and family advisory councils.32 Discussion The framework for patient engagement that we present highlights three main implications for the development of interventions to promote that

stablish patient and family advisory councils.32 Discussion The framework for patient engagement that we present highlights three main implications for the development of interventions to promote that engagement. First, the continuum of en- gagement helps characterize the extent to which patients are involved in decision making. If evi- dence that outcomes are improved by greater partnership continues to accumulate, then inter- ventions should be designed to move patients to increasingly shared power and responsibility at each level. Second, this framework underscores the pos- sibility that a greater impact could be achieved by implementing interventions across multiple lev- els of engagement. For example, interventions that increase engagement at the policy-making level may increase engagement or improve out- comes at the levels of direct care or organiza- tional design and governance. Third, interventions can be designed to ad- dress the factors that influence patient engage- ment. Interventions often focus on changing patient factors, such as knowledge or motiva- tion, without addressing organizational and societal barriers to engagement. Although highly motivated patients may become engaged without clear opportunities and invitations, the vast majority of patients will not. Further research may show that interventions targeting multiple factors or sets of factors si- multaneously are more effective and have a big- ger return on investment. For example, in the Agency for Healthcare Research and Quality’s current initiative to develop a guide to patient and familyengagementtoimprove hospital qual- ity and safety, hospitals can support engagement not only by educating patients about their role as a member of the care team and in discharge plan- ning, but also by moving nurse changes of shift to the patient’s bedside, training clinicians to support patient engagement, and partnering with patients at the organizational level to plan, deliver, and evaluate care.33

ng nurse changes of shift to the patient’s bedside, training clinicians to support patient engagement, and partnering with patients at the organizational level to plan, deliver, and evaluate care.33 Framing The Research And Policy Agenda Questions For Future Research Emerging evidence suggests that engagement can be a pathway toward achieving the goals of better quality of care, greater cost efficiency, and im- proved population health.18,25,34,35 However, we need to build an evidence base of what works and—just as important—what does not work in achieving and sustaining productive patient en- gagement. Our framework suggests the follow- ing questions to be addressed in future research. What factors, or combinations of factors, exert the greatest influence on patient engagement? What are the pathways by which they do this? When developing interventions at one level, such as direct care, what supports are needed at the levels of organizational design and gover- nance and of policy making to increase those interventions’ effectiveness? How do interventions at the policy-making level affect engagement efforts and outcomes at the other levels? Do interventions in which patients share lead- ership demonstrate better outcomes than those in which patients are only consulted or involved? If so, which interventions are most effective at facilitating engagementat the continuum’s high- est end? What are the most effective methods for organ- izations and policy makers to create oppor- tunities for engagement? How can organizations recruit patients to serve on governance commit- tees? How are committee members’ roles and responsibilities defined? How can research findings be translated into routine practice? How can we best support im- plementation and structure interventions that make the most of available resources? Measures Tracking and monitoring progress on engagement requires the use of parsimoni- ous, robust measures to assess what works, how it works, and—o

tions that make the most of available resources? Measures Tracking and monitoring progress on engagement requires the use of parsimoni- ous, robust measures to assess what works, how it works, and—over time—whether engagement efforts are improving outcomes. As a starting point, existing measures should be examined for their usefulness and how they might be FEBRUARY 2013 32:2 Health Affairs 227

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applied. For example, Judith Hibbard’s Patient Activation Measure, which assesses a person’s capacity for engagement, could help inform interventions to encourage engagement at the direct-care level.8 Collecting patient-reported outcomes, as the Consumer Assessment of Healthcare Providers and Systems survey does, can serve a dual role: both asking patients for feedback and informing quality improvement efforts. Scarce resources and a desire to decrease the burden of using measures may require balancing the development of new patient engagement measures against other pressing, but highly re- lated, measure gaps such as care coordination and affordability. However, the emerging evi- dence linking patient engagement to improved outcomes warrants heightened attention. A process that involves multiple stakeholders— including patients—could help prioritize gaps and make recommendations throughout the measure development life cycle: conceptualiz- ing, testing, endorsing, implementing, and evaluating a measure. Conclusion We are in the midst of an important and poten- tially transformative shift related to patients’ roles in health care. The framework for patient and family engagement that we present here makes it clear that health care professionals at all levels—clinicians, administrators, members of professional societies, and researchers—as well as policy makers play critical roles in part- nering withpatients and familiesand supporting them in new roles. Examples across the country show where engagement is taking place and achieving results. Yet

olicy makers play critical roles in part- nering withpatients and familiesand supporting them in new roles. Examples across the country show where engagement is taking place and achieving results. Yet engagement is not a quick fix. Many pa- tients and clinicians are still operating in an older paradigm of a paternalistic clinician and system. Efforts need to be made not only to raise patients’ awareness about the benefits of engage- ment but also to encourage and support patients’ increasing responsibility and leadership. In addition, engagement initiatives often chal- lenge the perceived needs, norms, and assump- tions of health care professionals as they make treatment recommendations amid a variety of constraints, such as short patient visits, in- creased complexity of diagnoses, and reim- bursement policies; help manage a complex and expensive health care system; and gener- ate scientifically valid evidence for medical interventions. To move forward, health care organizations and policy makers will need to embrace new norms and make substantial changes in their culture, processes, and structure. Moreover, if we are to achieve the laudable goals outlined at the beginning of this article, health care organ- izations and policy makers cannot make changes in isolation. The pathway to true engagement involves working in partnership with patients and families. ▪ The authors thank Thomas Workman for his extensive comments to finalize this framework. In addition, they gratefully acknowledge that this framework builds on the work of many projects and the insight and perspective of many colleagues, funders, and patients and families who have participated in and supported their work. NOTES 1 Institute of Medicine. Patients charting the course: citizen engage- ment in the learning health system: workshop summary. Washington (DC): National Academies Press; 2011. 2 National eHealth Collaborative. 2012 NeHC stakeholder survey results [Internet]. Washington (DC): The Coll

learning health system: workshop summary. Washington (DC): National Academies Press; 2011. 2 National eHealth Collaborative. 2012 NeHC stakeholder survey results [Internet]. Washington (DC): The Collaborative; 2012 Feb 27 [cited 2013 Jan 7]. Available from: http:// www.nationalehealth.org/ckfinder/ userfiles/files/2012%20NeHC %20Stakeholder%20Survey %20Results%20FINAL.pdf 3 Wilkins S. Patient engagement is the holy grail of health care. MedPage Today’s KevinMD.com [blog on the Internet]. 2012 Jan 27 [cited 2013 Jan 7]. Available from: http://www .kevinmd.com/blog/2012/01/ patient-engagement-holy-grail- health-care.html 4 Chase D. Patient engagement is the blockbuster drug of the century. Forbes.com [blog on the Internet]. 2012 Sep 9 [cited 2013 Jan 7]. Available from: http://www.forbes .com/sites/davechase/2012/09/09/ patient-engagement-is-the- blockbuster-drug-of-the-century/ 5 Coulter A. Engaging patients in healthcare. New York (NY): McGraw-Hill Education; 2011. p. 10. 6 Institute of Medicine. Engaging pa- tients to improve science and value in a learning health system. Chapter 4 in: Institute of Medicine. Patients charting the course: citizen engage- ment in the learning health system: workshop summary. Washington (DC): National Academies Press; 2011. p. 103–10. 7 Center for Advancing Health. A new definition of patient engagement: what is engagement and why is it important? [Internet]. Washington (DC): CFAH; 2010 [cited 2013 Jan 7]. Available from: http://www.cfah .org/pdfs/CFAH_Engagement_ Behavior_Framework_current.pdf 8 Hibbard JH, Mahoney E. Toward a theory of patient and consumer ac- tivation. Patient Educ Couns. 2010; 78(3):377–81. 9 Institute of Medicine. Envisioning the national health care quality re- port. Washington (DC): National Academies Press; 2001. 10 Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL, editors. Through the patient’s eyes: understanding and promoting patient-centered care. San Francisco (CA): Jossey-Bass; 1993. 11 Epstein

10 Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL, editors. Through the patient’s eyes: understanding and promoting patient-centered care. San Francisco (CA): Jossey-Bass; 1993. 11 Epstein R, Street R. Patient-centered Evidence & Potential 228 Health Affairs FEBRUARY 2013 32:2

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care for the 21st century: physicians’ roles, health systems and patients’ preferences. Philadelphia (PA): ABIM Foundation; 2008. 12 Coulter A, Ellins J. Effectiveness of strategies for informing, educating, and involving patients. BMJ. 2007; 335(7609):24–7. 13 Charmel PA, Frampton SB. Building the business case for patient- centered care. Healthc Financ Manage. 2008;62(3):80–5. 14 Carman KL. Implementation, en- gagement, and use: making health care more patient-centered, reliable, and safe. Plenary session remarks at: Agency for Healthcare Research and Quality 2012 Annual Conference; September 11, 2012; Bethesda, Maryland. 15 We use the term factor to highlight the contributions of various actions, processes, and structures to patients’ engagement. 16 Our continuum of engagement is influenced by Sherry Arnstein’s “ladder of citizen participation,” which describes a continuum of public participation in governance ranging from limited participation, or degrees of tokenism, to a state of collaborative partnership in which citizens share leadership or control decisions. Arnstein SR. A ladder of citizen participation. J Am Plann Assoc. 1969;35(4):216–24. 17 Langseth MS, Shepherd E, Thomson R, Lord S. Quality of decision mak- ing is related to decision outcome for patients with cardiac arrhythmia. Patient Educ Couns. 2012;87:49–53. 18 Institute of Medicine. Best care at lower cost: the path to continuously learning health care in America. Washington (DC): National Academies Press; 2012. 19 Institute for Patient- and Family- Centered Care. Frequently asked questions [Internet]. Bethesda (MD): IPFCC; [last updated 2010 Dec 29; cited 2012 Jan 8]. Availa

: National Academies Press; 2012. 19 Institute for Patient- and Family- Centered Care. Frequently asked questions [Internet]. Bethesda (MD): IPFCC; [last updated 2010 Dec 29; cited 2012 Jan 8]. Available from: http://www.ipfcc.org/ faq.html 20 Ponte PR, Conlin G, Conway JB, Grant S, Medeiros C, Nies J, et al. Making patient-centered care come alive: achieving full integration of the patient’s perspective. J Nurs Adm. 2003;33(2):82–90. 21 Maurer M, Dardess P, Carman KL, Frazier K, Smeeding L (American Institutes for Research, Washington, DC). Guide to patient and family engagement: environmental scan report [Internet]. Rockville (MD): Agency for Healthcare Research and Quality; 2012 [cited 2013 Jan 8]. Available from: http://www.ahrq .gov/qual/ptfamilyscan/ ptfamilyscan.pdf 22 Dy SM, Purnell TS. Key concepts relevant to quality of complex and shared decision-making in health care: a literature review. Soc Sci Med. 2012;74(4):582–7. 23 Rivadeneyra R, Elderkin-Thompson V, Silver RC, Waitzkin H. Patient centeredness in medical encounters requiring an interpreter. Am J Med. 2000;108(6):470–4. 24 Silow-Caroll S, Alteras T, Stepnick L. Patient-centered care for under- served populations: definition and best practices [Internet]. Washington (DC): Economic and Social Research Institute; 2006 Jan [cited 2013 Jan 8]. Available from: http://www.esresearch.org/ documents_06/Overview.pdf 25 Johnson B, Abraham M, Conway J, Simmons L, Edgman-Levitan S, Sodomka P, et al. Partnering with patients and families to design a patient- and family-centered health care system: recommendations and promising practices [Internet]. Bethesda (MD): Institute for Patient- and Family-Centered Care, Institute for Healthcare Improvement; 2008 Apr [cited 2013 Jan 8]. Available from: http://www.ipfcc.org/pdf/ PartneringwithPatientsandFamilies .pdf 26 Kleinpell RM. Visiting hours in the intensive care unit: more evidence that open visitation is beneficial. Crit Care Med. 2008;36(1):334–5. 27 Ro

c.org/pdf/ PartneringwithPatientsandFamilies .pdf 26 Kleinpell RM. Visiting hours in the intensive care unit: more evidence that open visitation is beneficial. Crit Care Med. 2008;36(1):334–5. 27 Rosen P, Stenger E, Bochkoris M, Hannon MJ, Kwoh CK. Family- centered multidisciplinary rounds enhance the team approach in pediatrics. Pediatrics. 2009;123(4): e603–8. 28 Tidwell T, Edwards J, Snider E, Lindsey C, Reed A, Scroggins I, et al. A nursing pilot study on bedside reporting to promote best practice and patient/family-centered care. J Neurosci Nurs. 2011;43(4):E1–5. 29 Re-engineered discharge cuts re- admissions. Hosp Case Manage. 2012;20(5):70, 75. 30 Gladwin J. Giving patients open ac- cess to medical records would help nurses improve care. Nurs Times. 2007;103(25):14. 31 Korda H, Eldridge GN. Payment in- centives and integrated care delivery: levers for health system reform and cost containment. Inquiry. 2011; 48(4):277–87. 32 188th General Court of the Commonwealth of Massachusetts. Session laws: acts 2008: chapter 35: an act to promote cost containment, transparency, and efficiency in the delivery of quality health care [Internet]. Boston (MA): General Court; 2008 [cited 2013 Jan 8]. Available from: http://www.mass .gov/legis/laws/seslaw08/sl080305 .htm 33 Dardess P, Carman KL. Implementing and evaluating the guide to patient and family engage- ment. Paper presented at: 5th International Conference on Patient- and Family-Centered Care; June 4–6, 2012; Washington, D.C. 34 Coulter A. Patient engagement— what works? J Ambul Care Manage. 2012;35:80–9. 35 Frampton SB, Guastello S. Putting patients first: patient-centered care: more than the sum of its parts. Am J Nurs. 2010;110:49–53. FEBRUARY 2013 32:2 Health Affairs 229

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5:80–9. 35 Frampton SB, Guastello S. Putting patients first: patient-centered care: more than the sum of its parts. Am J Nurs. 2010;110:49–53. FEBRUARY 2013 32:2 Health Affairs 229

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ABOUT THE AUTHORS: KRISTIN L. CARMAN, PAM DARDESS, MAUREEN MAURER, SHOSHANNA SOFAER, KAREN ADAMS, CHRISTINE BECHTEL & JENNIFER SWEENEY Kristin L. Carman is a managing director in the Health Program at the American Institutes for Research. In this month’s Health Affairs, Kristin Carman and coauthors propose a framework for understanding the elements of patient engagement, developing interventions that effectuate it, and promoting policies that spread it. They also offer a research agenda that could help illuminate more fully whether and how such engagement leads to improved health outcomes. Carman is a managing director in the Health Program at the American Institutes for Research, director of the Center for Patient and Consumer Engagement, and a codirector of the Health Policy and Research Group, a team of more than seventy health services research professionals. They conduct research on issues of public importance in health care quality, access, financing, comparative effectiveness research, patient and family engagement, health systems improvement, public deliberation, and health- related communications. Carman’s work emphasizes explaining evidence-based information for use in decision making. She has led many consumer engagement research and technical assistance projects and currently leads four projects on this topic funded by the Agency for Healthcare Research and Quality (AHRQ) and the Robert Wood Johnson Foundation. She earned both a master’s degree and a doctorate in human development and social policy from Northwestern University. Pam Dardess is a senior research analyst at the American Institutes for Research. Pam Dardess is a senior research analyst at the American Institutes for Research. She has particular expertise in the areas of patient and consu

search analyst at the American Institutes for Research. Pam Dardess is a senior research analyst at the American Institutes for Research. She has particular expertise in the areas of patient and consumer engagement, health care quality and cost reporting, and the development and testing of health education and information materials for patients, families, and clinicians. Dardess serves as the project director for AHRQ’s effort to assess the effects of an intervention to increase the relevancy and use of public reports of quality information and the agency’s effort to develop, implement, and evaluate a Guide to Patient and Family Engagement in Hospital Safety and Quality. Dardess holds a number of other leadership positions, including senior researcher for the California HealthCare Foundation’s Consumer Use of Cost and Quality Information project. She received a master’s degree in public health from the University of North Carolina at Chapel Hill. Maureen Maurer is a senior researcher at the American Institutes for Research. Maureen Maurer is a senior researcher in the Health Program at the American Institutes for Research. She leads large projects and tasks related to engaging consumers in health care decision making and policy; creating and testing materials for patients, families, and clinicians that translate complex medical evidence; eliminating health disparities; and conducting program evaluations. Maurer is a highly experienced qualitative researcher, responsible for designing research studies, conducting in-depth interviews and focus groups, and analyzing the results of large-scale qualitative research. She earned a master’s degree in public health from the University of North Carolina at Chapel Hill. Shoshanna Sofaer is the Robert P. Luciano Professor of Health Care Policy at Baruch College, City University of New York. Shoshanna Sofaer is the Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College, City U

of Health Care Policy at Baruch College, City University of New York. Shoshanna Sofaer is the Robert P. Luciano Professor of Health Care Policy at the School of Public Affairs, Baruch College, City University of New York, and a professor in the doctoral program in public health at the City Evidence & Potential 230 Health Affairs FEBRUARY 2013 32:2

[Image 1]: The photograph features a person with shoulder - length brown hair wearing black - framed glasses and a maroon top. The setting is an outdoor area with blurred greenery and a building in the background. The main subject is the person, and the prominent colors are maroon, brown, black, and muted greens from the surroundings.

[Image 2]: A woman with short dark hair is the main subject, wearing a dark blue top and a pearl necklace. She has red lipstick and is positioned against a plain light gray background. The image features contrasting colors with her dark hair and clothing against the light backdrop.

[Image 3]: This photograph features a person with short gray hair wearing a blue scarf and dark outerwear against a plain light-colored background. The main subject is the individual, positioned centrally with the blue scarf and dark clothing as prominent elements. The color scheme includes blue, gray, and neutral tones, creating a simple and professional appearance.

[Image 4]: A woman with curly dark hair is the main subject, wearing a black top and smiling. The setting is an outdoor environment with blurred greenery and a light - colored building in the background. The colors include dark brown for her hair, black for her clothing, and green and beige tones in the background.

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with blurred greenery and a light - colored building in the background. The colors include dark brown for her hair, black for her clothing, and green and beige tones in the background.

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University of New York Graduate Center. She serves as AcademyHealth’s Senior Fellow for Public Health Research Translation and as senior adviser for AHRQ’s effort to develop a Guide to Patient and Family Engagement in Hospital Safety and Quality. Sofaer was named a 2013 fellow of the National Academy of Public Administration and is a 2010–13 William Ziff Patient Engagement Fellow at the Center for Advancing Health, a Washington, D.C.–based nonprofit that conducts research, communicates findings, and advocates for policies that support the ability to benefit from advances in health science. Sofaer earned both a doctorate in health planning, policy, and administration and a master’s degree in community mental health from the University of California, Berkeley. Karen Adams is vice president of national priorities at the National Quality Forum. Karen Adams is vice president of national priorities at the National Quality Forum. She provides strategic direction and oversight for the National Priorities Partnership, a collaborative effort of fifty stakeholders from the private and public sectors to achieve better health and a safe, equitable, and value-driven health care system. Adams has held positions at the Institute of Medicine and the Commonwealth Fund, where she worked on quality and health care delivery reform issues. She earned a master’s degree in management from the College of Notre Dame of Maryland and a doctorate in public policy from the University of Maryland Baltimore County. Christine Bechtel is vice president of the National Partnership for Women and Families. Christine Bechtel is vice president of the National Partnership for Women and Families, where she is responsible for strategic direction and oversight of the organization’s health care pr

Families. Christine Bechtel is vice president of the National Partnership for Women and Families, where she is responsible for strategic direction and oversight of the organization’s health care programs. Her work includes managing projects funded by the nation’s largest foundations, partnerships with key business consortiums, and leading broad- based consumer coalitions that address issues ranging from patient-centered care to health information technology to quality measurement. Bechtel earned a master’s degree in political management from the George Washington University. Jennifer Sweeney is director of consumer engagement and community outreach at the National Partnership for Women and Families. Jennifer Sweeney is director of consumer engagement and community outreach at the National Partnership for Women and Families. Her responsibilities include leading the organization’s efforts to advance consumer involvement in health care delivery reform and to cultivate and sustain relationships with national, state, and local health care stakeholders, funders, and other partners with the goal of advancing the practice of patient-centered care. She earned a master’s degree in women’s studies from the George Washington University. FEBRUARY 2013 32:2 Health Affairs 231

[Image 1]: The photograph features a woman with shoulder - length blonde hair wearing a bright red collared shirt. She is positioned against a plain, light - colored background, suggesting a studio setting. The main colors are the vivid red of her shirt, the blonde of her hair, and the neutral tone of the backdrop. The image focuses on her upper body and face, presenting a professional portrait style.

g. The main colors are the vivid red of her shirt, the blonde of her hair, and the neutral tone of the backdrop. The image focuses on her upper body and face, presenting a professional portrait style.

[Image 2]: This photograph shows a woman with short brown hair wearing brown-framed glasses and dark earrings. She is positioned against a plain gray background. The main colors in the image are brown, gray, and dark tones from the accessories. The overall setting is simple and neutral, focusing on the subject.

[Image 3]: The photograph features a woman with shoulder - length brown hair and glasses, smiling directly at the camera. She is wearing a dark green top against a plain, light beige background. The main colors in the image are brown, dark green, and beige. This is a simple portrait with no additional elements or distractions.

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