Engaging Patients and Families in the Medical Home

June 2010
AHRQ Publication No. 10-0083-EF
Prepared For:
Agency for Healthcare Research and Quality, U.S. Department of Health and Human Services, 540 Gaither Road, Rockville, MD 20850,

Contract Number: HHSA290200900019I TO2
Submitted By: Mathematica Policy Research, 600 Maryland Avenue SW, Suite 550, Washington, DC 20024-2512
Authors: Sarah Hudson Scholle, Phyllis Torda, Deborah Peikes, Esther Han, and Janice Genevro


This document is in the public domain and may be used and reprinted with permission except those copyrighted materials that are clearly noted in the document. Further reproduction of those copyrighted materials is prohibited without the specific permission of copyright holders.

None of the investigators has any affiliations or financial involvement that conflicts with the material presented in this report.

This project was funded by the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services. The opinions expressed in this document are those of the authors and do not reflect the official position of AHRQ or the U.S. Department of Health and Human Services.

Suggested Citation

Scholle SH, Torda P, Peikes D, Han E, Genevro J. Engaging Patients and Families in the Medical Home. (Prepared by Mathematica Policy Research under Contract No. HHSA290200900019I TO2.) AHRQ Publication No. 10-0083-EF. Rockville, MD: Agency for Healthcare Research and Quality. June 2010.


We would like to thank the following experts for their contributions to this paper: Melinda Abrams (The Commonwealth Fund); Carolyn Allshouse (Minnesota Department of Health); Charles Brackett (Dartmouth-Hitchcock Medical Center); Christine Bechtel (National Partnership for Women and Families); Susan Edgman-Levitan (Stoeckle Center); Nettie Engels (Medical College of Georgia); Glyn Elwyn (Cardiff University); Paul Grundy (IBM); Allison Fissel Perry (National Patient Safety Foundation); Jessie Gruman (Center for Advancing Health); Dorothy Jeffress (Center for Advancing Health); Beverly Johnson (Institute for Family-Centered Care); Alex Kemper (Duke University); Alex Krist (Virginia Commonwealth University); Don Liss (Aetna); Kate Lorig (Stanford University); Lawrence Morrissey (Stillwater Medical Group); John Santa (Consumer Reports Health Ratings); Jeff Schiff (Minnesota Medicaid); Pat Sodomka (Medical College of Georgia); Leif Solberg (Health Partners Research Foundation ); David Stevens (National Association of Community Health Centers); John Wasson (Dartmouth Medical School); Richard Wexler (Foundation for Informed Medical Decision Making); Mitzi Williams (Medical College of Georgia); Michael Barr (American College of Physicians); and Greg Pawlson (National Committee for Quality Assurance).

At the Agency for Healthcare Research and Quality, David Meyers, Matt Quinn, and Charlotte Mullican provided useful comments and guidance at different stages of development of this paper.

Finally, at Mathematica, Myles Maxfield provided insightful comments on the focus of this paper.

The opinions expressed here are those of the authors.

Executive Summary

In its landmark 2001 report Crossing the Quality Chasm, the Institute of Medicine (IOM) identified patient-centeredness as one of six aims for the health care system. As the concept of a patient-centered medical home (PCMH) has gained increasing attention as a means of redesigning primary care, several commentaries have noted the need for strengthening and expanding opportunities for patient engagement in current medical home demonstrations.

The purpose of this paper is to offer policymakers and researchers insights into opportunities to engage patients and families in the medical home. We present a framework for conceptualizing opportunities for engagement, briefly review the evidence base for these activities, describe examples of existing efforts, suggest key lessons for future efforts, and discuss implications for policy and research.

The proposed framework envisions opportunities for engaging patients and families in the design and functioning of the medical home in three contexts:

  1. Care for the individual patient
  2. Practice improvement
  3. Policy design and implementation

Drawing on both published and “gray” literature, as well as input from key experts, we identified examples of promising engagement strategies by innovative providers. The largest number of tools and programs focus on engaging patients and families in the care of the individual patient, with a lesser number of examples and evidence discussed for practice and policy involvement. Table 1 summarizes examples of how patients and families can be involved in care for the individual patient, practice improvement, and policy. Our review of these examples and evidence led to the conclusions summarized after the table.

Table 1. Examples of patient engagement in medical home

This table presents examples of patient engagement activities and roles in the medical home at three levels: engagement in care for the individual patient, engagement in practice improvement, and engagement in policy.

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As articulated by the IOM, patient-centeredness is an independent aim of the health care system, and the diverse stakeholders among our expert panel and key informants agreed on the value of patient engagement as a way of achieving patient-centeredness. However, they held disparate views about the level of evidence needed to buttress policy efforts to promote patient engagement in the medical home and more broadly throughout the health care system. For some, efforts to promote engagement should be supported as a means toward achieving patient-centeredness and not judged by their impact on the IOM’s other quality aims, like effectiveness and efficiency. Amid rising health care costs and tightening budgets, other stakeholders have questioned whether primary care practices and the health care system overall should be expected to invest in efforts to engage patients and families in care without evidence of improved outcomes and lower costs of care.

The existing evidence base for patient engagement in general, and the effectiveness and feasibility of specific approaches in particular, is limited and variable. For patient engagement in care of the individual, there is good evidence that specific interventions can improve patient knowledge, self-efficacy, and some outcomes, and reductions in utilization or costs of care have been reported in some studies. The best evidence relates to patient engagement strategies incorporated in multifaceted interventions such as the Chronic Care Model, where it is difficult to break out the impact of specific components. Other intervention studies are promising but may lack generalizability to routine primary care practice. Efforts to involve patients in practice improvement and policy are usually the expression of a fundamental value, consistent with the IOM goal of patient-centeredness, and therefore research evidence of impact on outcomes or costs is very limited.

Efforts to engage patients in their own care, practice improvement, or policy are not common at present. Many examples are drawn from research or demonstration initiatives, and adoption may be limited due to the evidence concerns noted above. Both financial and logistical issues limit implementation. Traditional fee-for-service reimbursement does not reward practices for engaging patients. The infrastructure, time, resources, and culture change needed to transform practices to a patient-centered focus are significant. Practices need assistance with practice redesign to engage patients and families. Payment reform may be critical to supporting engagement in care, but also engagement in practice design, since the tasks of getting patient feedback and implementing changes to improve quality require practice time and resources. Practices, particularly small primary care practices, need access to resources for and assistance with redesign to accomplish meaningful patient engagement.

Nonetheless, the existing efforts to support patient engagement in care, practice improvement, and policy suggest key lessons about successful implementation. Based on the examples reviewed and the insights of key informants, we identified several themes:

  • Asking patients and families what matters most to them is a critical step in engaging them in care.
  • Both providers and patients and families need new skills for this partnership.
  • There is no one-size-fits-all solution; patient engagement will look very different for different practices, patient populations, and individual patient-provider interactions.
  • Health information technology (Health IT) has the potential to support patient engagement in the context of thoughtfully designed care systems.
  • Further research should examine the feasibility of different strategies to increase patient engagement in care, as well as their ability to achieve desired outcomes. In particular, it is critical to address key barriers to patient engagement, including the lack of capacity in individual practices for undertaking new interventions, the uncertainty about the costs and benefits of these interventions, the availability of trained clinicians and staff to implement them, and the lack of reimbursement or payment for new and potentially intensive interventions. As groundbreaking legislation supports activities such as the deployment of Health IT, the demonstration of new models of health care delivery, and the extension of health care coverage to millions of Americans, ample opportunities exist to test new and innovative strategies for engaging patients and families in care, practice, and policy.

1. Introduction

In its landmark 2001 report Crossing the Quality Chasm, the Institute of Medicine (IOM) identified patient-centeredness as one of six aims for the health care system. As the concept of a patient-centered medical home (PCMH) has gained increasing attention as a means of redesigning primary care, several commentaries have argued for greater emphasis on patient-centeredness in the principles that describe the expectations for the medical home, in the tools for qualifying practices as medical homes, and in the design of medical home demonstration projects and pilots (Berenson et al., 2008; Nutting et al., 2009; O’Malley, Peikes, Ginsburg, 2008). While both practical experience and a limited but growing body of research support the idea that greater engagement of patients and families in health care can contribute to improved quality and outcomes of care, patient- and family-centered care is not yet the norm in the U.S. health care system.

This paper describes the rationale, evidence, and opportunities for incorporating greater attention to patient engagement in medical home policy and practice. Our goal is to inform researchers and policymakers about these opportunities and about the key issues that are likely to affect the feasibility and sustainability of implementation. This paper draws on the published and the gray literature, as well as input from key experts, to identify examples of patient engagement. Though we briefly discuss the rationale and evidence for patient engagement strategies, this is not a rigorous evaluation of the evidence, nor is it our intent to suggest or endorse specific models.

This section discusses the roles of patients and families in recent formulations of the medical home model, and presents a framework and logic model for conceptualizing patient engagement in the medical home. Subsequent sections describe the rationale and evidence base for various strategies of patient engagement, highlight noteworthy examples, and discuss key issues identified from current implementation. The final sections summarize conclusions and implications for policy and research.

Origins and Recent Formulations of the Medical Home

The medical home is a model of the organization of primary care that provides patient-centered, comprehensive, accessible, and coordinated care and a systems-based approach to quality and safety. Over the past several years, the medical home model has gained prominence and support among multiple stakeholders for a variety of reasons. A coalition of groups of primary care physicians proffered the model as a way to mitigate the growing crisis in the availability of primary care services, while recognizing the need to improve the effectiveness and efficiency of primary care. Shortages in primary care providers exist across the country as a result of fewer physicians choosing primary care as a career (American Academy of Family Physicians [AAFP], undated; American College of Physicians [ACP], 2007). Payers, purchasers, and policymakers joined with others to support the concept as a vehicle for enhancing primary care, with the understanding that increased emphasis on primary care will lead to improved quality and moderated costs. Several studies offer support for the benefits of the medical home for cost and quality (Antonelli and Antonelli, 2004; Antonelli et al., 2008; Flottemesch et al., under review; Paulus et al., 2008; Reid et al., 2009; Rosenthal et al., 2008; Solberg et al., 2008; Wilhide and Henderson, 2006), and many other evaluations are under way.

The concept of a “medical home” is not new; the American Academy of Pediatrics (AAP) first used the term in 1967 to describe the ideal model of care for children with special needs (AAP, 1967; Cooley and AAP, 2004). The current focus on the medical home resulted from policy efforts to promote demonstrations of new payment models for primary care. In March 2007, the AAP, the American Academy of Family Physicians (AAFP), the American College of Physicians (ACP), and the American Osteopathic Association (AOA) collaborated to publish the Joint Principles of the Patient-Centered Medical Home (AAFP, AAP, ACP, AOA 2007). Working with the four primary care specialty societies, the National Committee for Quality Assurance (NCQA) developed the Physician Practice Connections®—Patient-Centered Medical Home™ (PPC-PCMH) program (NCQA, 2008). All saw the value of a standardized means of assessing the degree to which practices function as PCMHs. The PPC-PCMH standards have been endorsed by the National Quality Forum (NQF, as the Medical Home System Survey) (NQF, 2008), numerous physician organizations, and the Patient-Centered Primary Care Collaborative (PCPCC), a multistakeholder coalition of employers, consumer groups, health care providers, and others that advocate for the PCMH. The PPC-PCMH is now used in most PCMH demonstrations that include payment reform (PCPCC, 2009). Several other tools for surveying the medical home characteristics of practices have been used mostly for research projects. Some States have created their own tools for demonstration projects (e.g., Minnesota Department of Health, 2010).

As demonstration projects have proliferated, a healthy public debate has developed about how well the Joint Principles, the PPC-PCMH, and other tools embody the medical home model (Berenson et al., 2008; Nutting et al., 2009; O’Malley et al., 2008). The most common complaint is that there is not enough emphasis on the “patient-centered” nature of the medical home. Critics question how well and to what degree patients and families are involved in the development of current medical home efforts (the Joint Principles, qualifying tools, and demonstration designs), the components of the model, and the breadth and depth of expectations for medical home practices to engage patients and families in care and in quality improvement efforts.

Table 2. Comparison of joint principles and consumer principles for the medical home

This table lists the joint principles of the patient-centered medical home, principles for patient-and family-centered care from the consumer perspective, and how consumer principles differ from the Joint Principles.

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In response, the National Partnership for Women and Families (NPWF) convened a coalition of more than 25 consumer, labor, and health care advocacy groups to identify Principles for Patient- and Family-Centered Care: The Medical Home from the Consumer Perspective (NPWF, 2009). Importantly, this effort was not to react to the Joint Principles, but to build a set of principles out of consumer perspectives and experiences. The Consumer Principles articulate many of the same capabilities and expectations for the medical home as the Joint Principles, such as access, communication, coordination, ongoing whole-person relationship, and commitment to quality (Table 2). The differences lie in several areas. First, the Consumer Principles state that the care team is not necessarily “physician-led”; rather, the choice of leadership by a physician, nurse practitioner, or other clinician should belong to the patient and family. Second, the Consumer Principles add a focus on mutual respect, partnership, and open communication between the patient and the care team. The Consumer Principles also call for attention to the needs of multicultural populations.

Both the Joint Principles and the Consumer Principles draw on well-established literature discussing the key attributes of patient- and family-centered care. In Crossing the Quality Chasm, the IOM (2001) identified patient-centeredness as one of the six attributes of high-quality health care, on equal footing with the other attributes of safety, timeliness, effectiveness, efficiency, and equity. The IOM defined patient-centeredness as “providing care that is respectful of and responsive to individual patient preferences, needs, and values, and ensuring that patient values guide all clinical decisions.”

Table 3. Definitions of patient-centered care

This table lists definitions of patient-centered care used by the Picker Institute, the Commonwealth Fund, and the Institute for Family-Centered Care.

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Leading organizations have identified core components of patient- and family-centered care (Table 3). While their formulations have some commonalities (patient and family involvement, information sharing), there are some clear differences in emphasis. For example, the definitions of the Picker Institute (Gerteis et al., 1993; Picker Institute, undated) and the Institute for Family-Centered Care (undated [a]), both derived from work in hospital settings, focus on respect and facility issues (such as physical comfort and facility design). The Commonwealth Fund definition (Davis et al., 2005) focuses on patient-centered care as a component of a high-performing health care system and includes areas such as access and ongoing patient feedback. These various definitions demonstrate the growing consensus that more attention should be paid to including patients and families in the medical home movement, but they also point out the diversity of ideas about what constitutes patient engagement. A clear conceptualization of the different opportunities for the engagement of patient and families, and a comprehensive understanding of the existing evidence base are needed to help guide both the design and implementation of patient-centeredness in medical homes.

Conceptualizing Patient Engagement in the Medical Home

Based on medical home principles articulated by consumers and physicians, as well as the previous definitions of patient-centered care, we suggest a framework for conceptualizing patient engagement in medical home design and functioning in three contexts:

  1. Care for the individual patient
  2. Practice improvement
  3. Policy design and implementation

The three sections below offer examples of patient engagement in these different contexts, starting with efforts that focus on a patient’s own care. Within each context, there are multiple opportunities for involving patients. These levels of engagement should build on each other. Thus, efforts to engage patients and families in their own care could develop a pool of informed and activated patients who can serve as effective participants in practice design. With their knowledge of practice functioning and exposure to the concerns of multiple patients, some of these practice advisors can play an effective role in representing patients in policy development or inform others who represent them. Likewise, practices that seek patient participation in quality improvement may respond more effectively to patient and family needs, and policy can promote practice features that support patient engagement in their own care and in practice design.

Table 4. Framework for patient and family engagement in the medical home

This table lists how patients and families can engage in the care they receive from providers, in practice improvement, and in policy.

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What Is the Rationale for Patient Engagement Strategies?

Figure 1 presents a logic model for how patient engagement affects the function of the practice and leads to improvement in patient outcomes. In this model, patient engagement strategies seek to support patients and families to be activated and informed participants in their own care, to encourage practices to adopt and sustain proactive efforts to partner with patients, and to shape, at the system and community levels, policies and programs that are responsive to patient and family needs. This, as the IOM has articulated, is an aim of the health care system, but it can also lead to improved quality and reduced costs of care.

There is evidence for some of the relationships shown in this figure. Models of care, such as the Chronic Care Model (Bodenheimer, Wagner, and Grumbach, 2002a, 2002b), that emphasize productive interactions improve quality, outcomes, patient experiences, and in some cases, costs of care. Epstein and Street (2008) suggest that better communication between patients and providers “improves psychological well-being through reducing anxiety and improving social support and improves physical well-being by reducing physiological arousal, enhancing access to the best treatments, and improving follow-though with care.”


The medical home is a promising model of care, but current formulations and implementation do not encompass the breadth of opportunities for engaging patients and families. Efforts to engage patients and families can occur in three reinforcing contexts: care for the individual, practice improvement, and policy development. The next chapters provide more detail on specific types of patient engagement and on what is known about their effectiveness and feasibility.

2. Engage Patients and Families in Their Own Care

A fundamental opportunity for patient engagement relates to care of the individual. This requires active steps to elicit patient and family views and preferences, and to incorporate those views and preferences into a shared plan for care. This section examines four key opportunities for engaging patients and families in the individual’s care:

  1. Communication and Information Sharing
  2. Self-care
  3. Decisionmaking
  4. Safety

For each we discuss the rationale and evidence, examples, and issues for future consideration.

Communication and Information Sharing

Rationale and Evidence

The medical home model suggests a new structural relationship between patients and the health care team, since the medical home practice accepts responsibility for the patients’ care and outcomes. A patient-centered medical home also implies a commitment to seeking and valuing the voice of the patient and family in care decisions. The medical home can help to build this relationship with the patient and family by giving information about how the practice works and discussing roles and responsibilities for both the patient and the health care team. In particular, the medical home plays a crucial role in coordinating care over time, within the practice, and across settings of care, including medical and social services. Unlike the image of the gatekeeper in early managed care efforts, the medical home advocates for patients (based on patient preferences and values) and represents the patient’s overall interest in care provided within the practice or in other settings. A trusted partnership and understanding about roles provide an important foundation for patient engagement in other aspects of care, such as self-management and decisionmaking.

Explicit discussions about roles for the patient and health care team, as well as objectives of health care, are important. Research suggests that mutual recognition by the patient and physician of an ongoing relationship is highly valued by patients and is associated with greater patient and physician satisfaction, improved health outcomes, and lower costs (Baker, 1996; Baker and Streatfield, 1995; Freeman and Richards, 1990; Health Transition Fund, 2001; Macinko, Starfield, Shi, 2003; Starfield, 1998). Further, there is ample evidence that well-designed information, whether paper- or Web-based, can help to improve patient knowledge and experiences of care as well as have positive effects on self efficacy and health behavior (Coulter and Ellins, 2007). Targeted efforts to share medical information with the patient and other providers have also been helpful (Brown and Smith, 2004; Gustafson et al., 2002).


While there are no studies that illuminate how most effectively to discuss the medical home model with patients, a number of tools and reports are available to support this discussion (see Appendix Table A.1; many of these have been proposed or distributed by organizations such as the PCPCC). Some focus on giving information (for example, about getting health care or working with the health care team), while others seek to generate a mutual agreement about roles and responsibilities.

Typical of the information-giving tools are the sample “guide to the practice” of the Center for Advancing Health (CFAH)/Stoeckle Center (Gruman et al., 2009a) as well as the medical home brochure of the NPWF (2009). The CFAH/Stoeckle guide lists standard information (office hours, location, billing procedures) as well as specific instructions for other important aspects of access and communication (how to get medication refills, how to keep the practice up to date on care received from other providers). The NPWF brochure describes “what your care team should do” and “what you can do” on topics such as communication, information sharing, and support (Table 5). These kinds of agreements often also state that the patient should feel comfortable asking questions, communicating openly, and letting care teams know when they do not understand something.

Table 5. Excerpts from the National Partnership for Women and Families Medical Home Brochure

This table includes excerpts from the National Partnership for Women and Families Medical Home Brochure that describe “what your team should do” and “what you can do” on topics such as communication, information sharing, and self-care.

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While these tools mention the importance of communicating about services and medications received from other providers, they leave open the question about who will take the lead. One study found that families were more comfortable handling communication between primary care and specialty care than physicians were ceding this role to families; still, nearly a third of parents were uncomfortable serving as the intermediary (Stille et al., 2007).

Another approach is to establish an explicit agreement about the roles and responsibilities of the health care team and the patient/family. In the enacted but delayed Medicare Medical Home Demonstration, the Centers for Medicare & Medicaid Services (CMS) planned to require that medical home practices obtain a written agreement with eligible patients and have a process in place for sharing information about what it means for the practice to function as a medical home. This information was to include what patients must understand about what the medical home will do for them and what their responsibilities would be to the medical home. The CFAH similarly proposes, between patients/families and health care providers, a “pact” that would reflect agreement about roles and responsibilities and suggest “a sense of moral and social obligation which expresses the intent of all parties to work together toward a shared aim” (Gruman et al., 2009b). This idea of an agreement is also incorporated into projects at Geisinger (Casale et al., 2007) and Massachusetts General Hospital (Chueh, 2008) that have a broader focus on shared decisionmaking (Appendix Table A.2).

Experience with formal agreements has not been entirely positive. In 2004, France instituted a registry system designed to give primary care physicians accountability for a patient population (see Appendix Table A.1). Physicians became eligible for an additional fee if they developed a shared care plan for patients with chronic disease and patients became eligible for lower cost-sharing. The requirement was later discontinued after it became clear that physicians viewed the plans as an administrative burden rather than an aid to care and that patients were not participating in developing the plans (Polton, 2009).

Information sharing can improve coordination of care. Discussing a summary medical record with patients can help them understand the providers’ perspective on the visit and next steps, and be shared with other providers. The Stoeckle Center provides families and other care providers with a written summary of care for children with chronic conditions. Electronic tools can support information sharing between patients and health care teams. Tools like after-visit summaries, care plans, access to medical records, and personal medical records may enable improved communication and provide resources to patients to share with other providers and in emergencies. Personal health records and other Web-based tools offer alternative approaches to information sharing.


Effective methods for communicating with patients. Questions remain about the best way to discuss with patients how a practice works and just what are the roles and responsibilities of patients and the health care team. What information is best shared via the Web or brochures? How frequently should information be discussed by the patient and care team (first visit, once a year)? With whom in the practice should the discussion take place? Should a discussion of roles and responsibilities be formalized with an agreement?

Adapting to different populations. Understanding the preferences of patients and families about their roles and responsibilities, as well as their capabilities for participating as partners, is important, as patients will vary in what type of role (if any) they want. Different ways of discussing partnerships may be needed for populations with low literacy or a mistrust of the health care system.

Meaningful agreement. As the French example illustrates, an explicit written agreement may not achieve the desired goal of obtaining a “shared understanding” of roles and responsibilities. Understanding how to make the agreement process a meaningful step for patients/families and the health care team is critical.

Role of Health IT. While electronic tools can support information sharing, interfaces between practice-based electronic medical records (EMRs) and patient personal health records are not yet seamless and require a lot of maintenance. Developing ways to make them a seamless part of an information system is critical; this includes updating practice workflows to incorporate these tools.


Rationale and Evidence

Supporting patients in improving their health is a key expectation for the medical home. Efforts include helping patients with chronic diseases (1) develop and follow self-care guidelines about diet, exercise, medication adherence, and symptom recognition; as well as (2) deal with risk factors such as obesity and undertake efforts to reduce their risks. A recent review showed that a variety of efforts to support patient self-management have demonstrated positive effects on patient outcomes, knowledge, and self-efficacy. These efforts include computer-based programs that combine health information with online peer support, decision support, or help with behavior change (Murray et al., 2005). However, programs that merely offer information do not appear to be effective (Coulter and Ellins, 2007). Despite evidence of effectiveness, self-management support and patient followup are infrequently used in most health care settings (Glasgow et al., 2005). In a recent national survey of American adults with a chronic condition, 30 percent of respondents said that they frequently or occasionally leave a doctor’s office or hospital confused about what they should do, 57 percent said that their health care providers did not ask whether they have help to manage their conditions at home, and 45 percent reported that their providers rarely or never refer them to patient resources such as classes, counselors, dieticians, or health educators (NCOA, 2009).

There is growing evidence about the need to adapt self-care support to patients’ self-efficacy. According to Hibbard et al. (2009), activated patients engaged in more self-care behaviors, and patients who received coaching tailored to their activation level had greater improvement in their biometrics and their adherence to recommended regimens, and showed greater reductions in hospitalizations and in emergency department use than did patients coached in the usual way.


The best-known and most widely deployed examples of self-management programs are the collaborative care management principles embedded in the Chronic Care Model (Bodenheimer, Lorig, et al., 2002; see Appendix Table A.2). Self-management is a central component of the Chronic Care Model (Wagner, Austin, and Von Korff, 1996), and numerous studies have shown the ability of teams to implement and increase self-management support processes (Glasgow et al., 2002). Because the model involves multiple components, it is not possible to isolate the effects of the self-care components (Chodosh et al., 2005). There are also concerns about the sustainability of the Chronic Care Model outside research settings; a recent report attributed the discontinuation of effective Chronic Care Model programs after the trials ended to the lack of reimbursement for care management staff and other components of the intervention (Butler et al., 2008).

The Chronic Disease Self-management program developed at Stanford University has gained attention as an effective, peer-led model. Peer facilitators lead small-group training on self-management skills following a structured protocol, usually in a community-based setting with limited interaction with the patient’s health care providers. The program has been shown to improve outcomes in a number of areas and may lower costs for participants (Lorig et al., 1999 and 2006); however, the evidence for this program is limited to trials conducted by the original developers and with relatively small and self-selected patient groups. Still, the Administration on Aging sponsors this self-management program in senior centers and churches across the country. Participants in group classes are more likely than nonparticipants to be white and female (Bruce, Lorig, and Laurent, 2007), but the program is apparently beneficial for minorities who participate (Lorig et al., 2008). An online version of the programs offers an opportunity to reach different populations.

Health IT provides the opportunity to support self-care (including through the programs noted above), and many practices with EMRs are using tools such as secure messaging, education, self-monitoring, and online portals (see examples in Appendix Table A.2 from Geisinger, Kaiser, and CHESS). The Ideal Medical Practices model uses a Web-based tool to assess patient needs and self-efficacy; practices can use this information to work with the patient and family to develop a care plan (Wasson et al., 2003). Recent research has tested additional capabilities, such as importing data to a personal health record, enabling patients to author a care plan prior to upcoming appointments, and offering a secure patient Web site for recording symptom-monitoring at home (Grant et al., 2008; Green et al., 2008). Neither study showed a positive impact on patient outcomes from the Health IT innovation alone (Grant et al., 2008), although one study found increases in treatment changes and the other found improved outcomes with the addition of contacts from a pharmacist (Green et al., 2008). There was evidence that the research participants tended to have milder disease and higher socioeconomic status than nonparticipants or the population with chronic disease in general. These studies raise concerns about the ability to engage the neediest group in Health IT interventions, the “stickiness” of the interventions (the degree to which patients persist in using the tools), and the importance of human contact (at least electronic) in supporting self-care (Jones and Peterson, 2008).

Other interventions seek to support patients and families who may benefit from resources outside the practice for supporting self-care. Several examples of electronic tools that identify patient needs and facilitate patient engagement with outside resources (such as smoking cessation) are described in Appendix Table A.2. ELinkS, an EMR-based tool, prompts clinicians to counsel patients on healthy behaviors and gives clinicians a tool to automate referrals to community counseling services. This makes it easier for the clinicians to identify local resources and discuss them with patients, and the community service agencies can proactively reach out to the patients (Krist et al., 2010). But the research study also included funding for the outside counseling—and when the grant funds ran out, the referrals declined. Practices also had problems maintaining the linkages with the community-based services, in part because of staff turnover. Some patients preferred to get the information and follow up themselves. The cost of services was a major factor in participation. This experience highlights the multifaceted challenges in care coordination.


Skills for self-care. Helping patients and families acquire the skills for self-care, in addition to providing information about diseases, risks, and treatments, is an important challenge for the medical home. A key step in this process is understanding how patients view their problems and their priorities for care (e.g., incontinence may be a greater priority than high blood pressure). A second step involves eliciting patients’ views of their ability to change and helping them to gain skills to become more confident in self-care. Practical models are needed for eliciting patient views about their priorities, their interest in self-care, their confidence in it, and use of this information in supporting self-care.

Deployment. Despite the evidence for self-care programs, deployment is not widespread, and determining where to focus resources for support is a primary issue, particularly under current payment systems in which reimbursement for care management and other nonvisit services is uncommon. Small practices may need assistance in understanding exactly how they can accomplish this, either within the practice or through the use of community resources. Effective methods and incentives for encouraging and supporting handoffs and collaboration between health care practices and community-based services are needed, along with the specialized efforts to support patients in setting and meeting health goals. Structural problems, such as lack of office space for group meetings, can also be barriers.

Tailoring for different populations. Using multiple modes (face-to-face, Web, mail) and multiple settings (practice, community) may be critical to reaching greater numbers and different types of patients. The proven self-care approaches have not appealed to all patients, and therefore need to be tailored or supplemented.

Opportunities for Health IT. The expansion of Health IT offers new ways to support patient engagement in self-care. A priority for future work could be to consider ways to make the interventions more acceptable and useful to a wide range of populations. Special effort also could be applied in considering how Health IT can support people with limited English proficiency and limited literacy.


Rationale and Evidence

That patients and clinicians should be partners in making treatment decisions is a common expectation for the medical home and patient-centered care; how to incorporate this expectation and include the adoption of formal shared decisionmaking processes is still open to debate. Shared decisionmaking refers to a formal process in which patients review evidence-based decision aids to understand the likely outcome of different treatment options, think about and discuss with a health care provider what is personally important about the risks and benefits of different options, and then decide jointly with the health care provider on a treatment or course of action that best reflects the patients’ preferences and values (Charles, Gafni, and Whelan, 1997). This process focuses on preference-sensitive decisions, where there is not a single “best” option. There is evidence that use of evidence-based decision aids increases patients’ understanding of their condition, treatment options, and outcome probabilities; improves the agreement between patients’ preferences and treatment decisions; and reduces the use of discretionary surgery without apparent adverse effects on health outcomes or satisfaction (Coulter and Ellins, 2007; O’Connor et al., 2009). However, the existing evidence does not confirm benefits for health outcomes or costs.

Patients’ willingness to engage in the decisionmaking process varies by the type of decision; for example, patients with cancer have an urgent need to make a decision and are more likely to view the decision aid and participate in the discussion. Where there is less urgency to the decisions, such as with decisions about chronic conditions or preventive needs, patients are less likely to participate in shared decisionmaking efforts (Brackett et al., 2010). Most of the research on decision aids and formal decisionmaking processes has been conducted in specialty settings, which are the sites for many preference-sensitive services such as knee replacement and breast cancer treatments. There is a desire to implement shared decisionmaking process in primary care, both as a way to move the decisionmaking upstream (before a referral happens) and for services that are generally found in primary care (such as cancer screening and chronic care management).

Four States have current or pending legislation to promote the use of shared decisionmaking for the treatment of various conditions, and the recent Federal health care reform also calls for demonstration activities (Maine, 2010; Minnesota Health Services, 2010; Vermont, 2009; Washington, 2007).


The Foundation for Informed Medical Decision-Making (FIMDM) is supporting pilots in primary care practices such as Stillwater Medical Group in Minnesota and Dartmouth in Vermont (FIMDM, 2010). These pilots are disseminating decision aids through a variety of mechanisms: (1) creating health libraries where patients can view decision aids and obtain one-on-one decision support, (2) training practice-based health coaches and health educators to provide one-on-one decision support to patients after they view a decision aid, and (3) offering group medical appointments where providers can discuss decision aids with multiple patients simultaneously.

FIMDM has identified some of the key issues affecting implementation, such as developing efficient approaches to identify targeted patients, making a decision aid available to them for a range of decisions, engaging patients to use the decision aid, and providing additional counseling or decision support to patients after they have viewed the decision aid (FIMDM, 2010). For example, the implementation of shared decisionmaking may have to vary based on the type of decision. For screening decisions, viewing an aid before a scheduled visit may be useful. For chronic conditions, decision aids can be incorporated into self-management programs or group visits. For preference-sensitive conditions when elective surgery is being considered, viewing the aid prior to specialist referral or specialist visits may be important.


Adapting to patient’s preferences for decisionmaking role. Efforts to engage patients in decisionmaking must consider the extent to which patients and families vary in their desire to assume such responsibility (Bruera et al., 2001; Degner and Sloan, 1992) and the many factors that affect patient preferences (Epstein and Street, 2008). Practices may need an explicit approach for identifying patient and family desire to be involved in decisionmaking. Such discussions will determine the amount of shared decisionmaking each patient would like. Patients vary widely in how much they want to be involved in decisions. Some patients make the decision, for example, to leave the decisionmaking to the doctor. When the patient does want to take an active role, the practice team needs to be prepared for possible differences in opinions. Ways to prepare staff and clinicians to anticipate and work with these conflicts are needed.

Logistics. It takes significant thought and effort to get the right tool to the right person at the right time. This is an area where research and demonstration projects are needed to identify roles of different members of the health care team, opportunities for using Health IT or shared community resources to support shared decisionmaking, and ways to make the process relevant and useful to patients and families, as well as the funding streams to support these efforts. Web-based tools to facilitate shared decisionmaking are promising but need more work. Developing Web-based tools is complex and requires specifying the content, as well as using creative design and tailoring the tool to the target audience (Glyn Elwyn, personal communication). Ensuring that tools are developed and maintained as the scientific evidence base changes is another challenge.

Meeting the needs of vulnerable populations. Few existing evidence-based decision aids are suitable for patients with low health literacy or limited English proficiency; development and testing in these populations is needed.


Rationale and Evidence

The National Priorities Partnership (2008), a collaborative effort of 28 major national organizations involved in all aspects of health care, designated safety as one of the six national priorities for the U.S. health care system. They call for promoting a culture of safety and driving to lower the incidence of health-care-induced harm, disability, and death toward zero, but most of the specific goals target inpatient, rather than primary, care. Medical homes are currently expected to use electronic tools to support patient safety (for example, e-prescribing tools that identify potential medication interactions). However, there may be additional opportunities for patients and families to work with medical home teams to promote safety. Studies show that patients can improve safety through informed choices, safe medication use, infection control initiatives, observing care processes, reporting complications, and practicing self-management (Coulter and Ellins, 2007). However, patients’ willingness to take on safety actions is likely to be affected by a variety of patient, provider, and system factors. Importantly, many patients find it difficult to behave in ways that might challenge clinicians (such as questioning a physician’s judgment or actions, Davis et al., 2007), and patients need a sense of self-efficacy and assertiveness to assume this role (Hibbard et al., 2007).


Tools developed by the American Hospital Association (2003) and the National Patient Safety Foundation (2008) support the creation of opportunities for patients to open a conversation about safety issues with providers (Appendix Table A.1). However, there is little information on the extent of the adoption of these tools in primary care settings.

There are tools for involving patients in reporting on potential safety problems, but use of these tools is not widespread. Most projects to encourage anonymous reporting of safety concerns have focused on clinicians and staff. For example, parents/patients accounted for only 5 percent of safety reports in an effort at Beth Israel pediatric ambulatory care clinic (Neuspiel et al., 2008). An AHRQ-funded project is under way to develop recommendations for reporting systems that would allow consumers to report on potential safety events (Designing Consumer Reporting Systems for Patient Safety Events, 2009). The HowsYourHealth survey currently allows patients to report on safety concerns, but it has not been widely adopted (Wasson et al., 2007).

Efforts to improve medication reconciliation are another approach for engaging patients and families in patient safety (Appendix Table A.2). About a week before a scheduled appointment, the Mayo Clinic sends patients a letter reminding them to bring in all medication bottles or an updated list of medications. At the visit, a physician assistant meets with the patient to verify the information and make any needed changes in the medication list in the EMRs, and the physician discusses the information and makes any changes during the patient visit. A new list can then be printed for the patient (Varkey et al., 2007). Some organizations have employed Web-based personal health records to make it easier for patients to record information, but this may require patients to enter information themselves.


Role of patients/family in safety culture. Organizations that encourage clinicians and staff to report safety concerns emphasize safety as part of a culture of quality, make a commitment to following up and reporting on all reports, and train clinicians and staff on the importance of safety. Medical homes offer an opportunity to inform patients about safety behaviors and to query patients regularly about possible problems. Efforts to encourage patients to report safety concerns anonymously could be considered. Systems that allow employees to report safety concerns could be expanded to allow patients and families to report concerns as well.

Lack of definition and measures. More effort is needed to identify specific opportunities to improve patient safety in primary care settings. This will help practices and patients know what to look for and help practices track issues for improvement.

3. Engage Patients and Families in Practice Improvement

This section turns to the rationale and evidence base for engaging patients in the design, evaluation, and improvement of care delivery at individual practices, and offers examples of opportunities to do so. Patient and family participation in practice improvement activities has been a critical component of the medical home model, particularly as originated in pediatric settings.

Rationale and Evidence

In most cases, efforts to involve patients in practice improvement are the expression of a fundamental value, consistent with the IOM goal of patient-centeredness, and have therefore not been the subject of study. There is little evidence about the impact of these activities on outcomes for the practices, the clinicians and staff, or patients. The few randomized studies in the literature suggest that involving patients in the development of patient information materials may lead to more relevant, readable, and understandable tools; however, consumer input on informed-consent documents did not have an effect on patient’s understanding of the research trial described (Nilsen et al., 2006). Observational studies suggest that involving patients in practice improvement enhanced staff attitudes and increased participants’ use of services (Forbat et al., 2009). Leaders from organizations that have involved patients and families in practice quality improvement or redesign testify as to its importance and positive impact. In key informant interviews we conducted for this paper, one State Medicaid director told us, “I am convinced that in our experience, patients drive change faster and more appropriately than anything else” (Jeff Schiff, personal communication).


Informal methods for gaining patient and family feedback are frequently used in quality improvement and are particularly useful for getting at the more specific ideas and concerns of patients and families. Examples include keeping a suggestion book or comment cards in waiting rooms, getting family input on the development of new educational materials, asking patients and family members to do a “walk-through” of the practice to get ideas on the patient’s perspective of the practice workflow, discussing different methods of involving patients in shared decisionmaking, helping design programs to improve the completion of health care proxies and advance directives, and inviting patients to interview prospective staff. In particular, these informal approaches are useful for understanding how to approach a quality problem identified through survey or other performance data. Patients can also be involved in planning data collection efforts and interpreting data from multiple sources (including chart review, patient surveys, and staff surveys).

Efforts to include patients as members of standing patient/family advisory councils, quality improvement teams, or other ongoing groups to support design and evaluation of the practice and services have been used in a number of collaborative quality improvement models, particularly in hospitals. The most advanced models derive from medical home efforts for children with special health care needs in primary care settings as well as examples from inpatient settings led by groups like the Institute for Family-Centered Care; the applicability of these models to typical primary care settings is unclear (Appendix Table A.3 gives examples). The work of the Institute provides examples of what is possible at larger facilities and strategies that may be adaptable for primary care practices (Institute for Family-Centered Care, undated [a], [b]). These include patient/family rounds in the inpatient settings, the use of family advisors in training for new staff and for medical and nursing students, and the standing patient/family advisory council, as well as the inclusion of patient/family members in workgroups and committees on topics ranging from quality improvement teams to hospital renovations, admitting procedures, and discharge planning (Reid Ponte and Peterson, 2008). At MCGHealth, patient advisors participate in mandatory training of new employees, where a 3½-hour block of 2-day training is devoted to patient and family-centered care. A key message to staff, including those involved in housekeeping and environmental services, is that they may spend more physical time with hospital patients than clinical staff do. Patients may tell them something they have not told the doctor, nurse, or anyone else. “We try to train everyone to make a difference in the patient’s life” (Nettie Engels, personal communication). In most of these efforts, providers invite patients to participate, and training on roles and expectations is usually provided.

The American Academy of Pediatrics’ Medical Home Toolkit (updated 2008) suggests that practices should assess the needs of families, solicit feedback from families, have a parent/practice advisory group, establish specific communication methods or systematic inquiry of family concerns/ priorities, and display a written mission statement.

In a medical home collaborative in Minnesota, two family members served on the quality improvement team and offered suggestions for addressing problems that providers had not identified themselves (Carolyn Allshouse, personal communication). The parents on one team requested that the pediatric clinic be made wheelchair-accessible. (The providers used a different entrance to the clinic and were unaware of the problem.) Parents also started networking groups among families in the practice and community to identify needs of and communicate with families.

Surveys are commonly used for gaining feedback from patients and families and have been proposed by advocates for patient-centered care. Several standardized tools are available, including the AHRQ CAHPS Clinician and Group survey. National information on how often ambulatory practices conduct surveys is not available. There is limited evidence about how practices can use survey results to improve quality, but the available studies suggest that considerable planning and organization is needed. In a Minnesota collaborative focused on using data on patient experiences to improve quality, only two of seven medical groups demonstrated short-term improvements. Focusing on simple interventions and having engaged leadership and organizational structure for practice redesign appeared to be related to demonstrated improvement (Davies et al., 2008).

The collection and reporting of patient experience data may be facilitated by regional or statewide efforts. Examples are Massachusetts Health Quality Partners, Pacific Business Group on Health, and participating sites in the Aligning Forces for Quality program (Robert Wood Johnson Foundation, AF4Q, 2010; Massachusetts Health Quality Partners, 2010; Pacific Business Group on Health, 2010). All three efforts use versions of the CAHPS Clinician and Group Survey and report data publicly. However, they vary in level of reporting (physician organization, practice site, or individual doctor). A quality improvement guide on the AHRQ Web site ( offers information on how to use patient experience data in quality improvement. The guide offers information for organizations on how to analyze the results of CAHPS surveys to identify strengths and weaknesses, develop strategies to improve performance, and implement interventions to achieve performance goals based on CAHPS results.

Another model for assessing patient experiences is the use of Web-based surveys directed by the practice. HowsYourHealth is an example. Practices can give patients information on how to complete the anonymous survey online; patients must provide permission to allow their results to be shared with the practice. Practices can use the survey results in real time for quality improvement at low cost (Wasson et al., 2008).


Feasibility in routine practice. While there are successful models for involving patients in quality improvement teams or advisory councils, these come from larger practice settings or smaller practices linked to a collaborative network. There are particular concerns about applicability of models for small primary care practices. Engaging patients in practice improvement takes extra time and resources. Surveys or other informal approaches for getting feedback may be more feasible in these settings. Because of the training considerations as well as the need to listen and compromise, extra staff time is needed to involve families in ongoing activities.

Likewise, the time and resources needed to collect, analyze, and report survey data are often new expenses for the practice. Practices perceive on-site data collection as the cheapest and easiest way to collect patient survey information, but research suggests that these data may be biased (Anastario et al., in press), and experience shows that the cost may not be low, especially when tasks are assigned to an already overburdened primary care team (Susan Edgman-Levitan, personal communication). Web-based methods such as HowsYourHealth are appealing because of their low cost and the opportunities they offer for streamlined data collection and analysis.

Need for multiple and flexible approaches to gain patient input. Practices may need to consider multiple options for obtaining patient feedback for practice improvement. Survey data may help identify problems, but finding the solutions is likely to require other efforts, such as focus groups, informal interviews, or practice walk-throughs.

Identifying patients to participate in improvement activities. Practices need guidance on how to identify and recruit patients and families to participate in practice improvement. Experience from existing programs suggests that important considerations are the patients' and families' ability to work with the health care team, their breadth of experience with the health care setting, their ability and willingness to communicate concerns, and the patient or family member's ability to represent patients and families broadly rather than focus narrowly on a particular issue.

Training. When patients play ongoing roles on quality improvement teams or advisory groups, training is needed for them as well as for clinicians and staff. Learning together about new constructs, such as quality improvement, puts practice staff and family members on an equal plane. For patients/family members, training might also address such issues as how to tell their story, what the privacy boundaries are, and where and how to get information on topics they do not understand.

Meaningful participation. Involving patients/family members in key roles such as setting meeting agendas, taking notes, and leading meetings conveys that they are equal members of a team or committee. Setting realistic expectations is important. For example, if renovations to a crowded waiting room are not feasible, that can be acknowledged up front so that the discussion can focus on other issues.

Sustaining participation. Practices can expect patient attrition due to family illness, loss of interest, or other competing needs. Inviting additional patients and family members or creating a family network may be helpful. Some practices give small stipends to patients and family members serving as facilitators, as well as provide meeting space and supplies for patient meetings. The enthusiasm of the practice and its willingness to embrace suggestions from patients and family members can also influence ongoing participation.

Motivation. Practices must be motivated to use patient input to improve care. Motivation can be external, based on accountability through public reporting or financial incentives, or internal, usually deriving from the desire to improve patient care. For example, hospitals are financially incentivized to report on the hospital version of the CAHPS survey as part of CMS payment policy. There is no similar incentive for practices, although they may receive financial or other rewards from private payers for high performance on surveys of patients.

4. Engage Patients and Families in Policy

Policy development and implementation is the third context for engagement of patients and families. Design of medical home policy initiatives, demonstrations, and pilots provides some immediate opportunities. While the involvement of consumer representatives is increasing in the efforts of both the public and the private sector, the degree of input varies. Besides service on multistakeholder committees, patient advocacy roles may involve gathering input from patients, synthesizing patient experiences, participating in training, and overseeing implementation. This section discusses the rationale and evidence for patient engagement in these policy initiatives, describes examples related to the medical home and other health care initiatives, and examines issues related to broader implementation.

Rationale and Evidence

As with patient involvement in practice improvement, efforts to engage patients in policy initiatives derive primarily from a core belief in patient-centeredness. The scant research evidence on the impact of patient engagement in policy contrasts with strong endorsements of the process from leaders and organizations who have been involved in these efforts. A recent review of randomized controlled trials assessing methods for involving consumers in developing health care policy and research, clinical practice guidelines, and patient information material found very few published studies, and none showed consistent benefits or addressed the costs of the interventions (Nilsen et al., 2006). One trial compared two different methods for involving the public (telephone discussion versus face-to-face group meeting), and showed that the latter is more likely to engage consumers and may result in different community health priorities (Nilsen et al., 2006). Clinical and organizational leaders in programs or organizations that have adopted patient engagement strategies testify as to their benefits (personal communications, Pat Sodomka, MCGHealth; Jeff Schiff, Minnesota Medicaid). The need for leadership and commitment to patient-centered care at the top levels of governance was a primary conclusion of Pursuing Perfection, a national program of the Robert Wood Johnson Foundation designed to help hospital and physician organizations improve patient outcomes (Robert Wood Johnson Foundation, 2005). Still, while patient involvement was a key component of this program, it is unclear how it affected the outcomes or to what extent it was implemented across the multiple organizations. Patients and family members who have the opportunity to serve in multistakeholder groups may reap the personal benefits of feeling more empowered and able to manage their self-care more effectively (Cavet and Sloper, 2004; Hubbard et al., 2007).


The concept and desirability of engaging patients in health care policy and governance is not new. When the Office on Economic Opportunity was established in the mid-1960s as part of the War on Poverty, one of its stated goals was to develop both consumer participation in identifying needs important to the community and a structure for serving those needs. Service programs, including Head Start and Neighborhood Health Center, were required to convene community councils that were to guide such activities as the establishment of program priorities, the selection of the project director, the location and hours of center services, and the evaluation of suggestions and complaints from patients. The organization and functioning of those councils varied, but anecdotal evidence from site visits in 27 centers suggested that consumer participation led to changes (e.g., requiring Spanish-speaking clinicians or hiring clinicians who live in the neighborhood to facilitate after-hours access to care) and noted the value of having consumers from impoverished neighborhoods sit at the table with professionals and government leaders (Sparer, Dines, and Smith, 1970). Today, consumers continue to play a strong role in governance of federally qualified community health centers. In addition to giving feedback on how patients and families experience care in the clinic, consumer board members participate in decisions on hiring and service offerings. A yearly needs assessment of the community, along with the consumer’s knowledge and understanding, are critical for planning services (National Association of Community Health Centers, 2007).

Consumer involvement is also a keystone in other health care efforts (see Appendix Table A.4), such as mental health and substance abuse care, which features consumers as leaders in recovery-based care (Substance Abuse and Mental Health Services Administration, 2006); consumer-led health care delivery systems such as the Group Health Cooperative (Group Health Cooperative, 2010); the priority-setting efforts of Oregon’s Medicaid program; the involvement of consumers in research through the Federal Government’s Office on Human Research Protection, which requires that local institutional review boards approve research involving human subjects (Director, Division of Human Subject Protections, 2000); and the inclusion of consumers on AHRQ’s stakeholder panel for its Effectiveness of Health Care program. The United Kingdom has recently evolved from relying on a standing advisory forum for the local health district to establishing independent networks financed by local health districts. Patients can be involved in different ways, ranging from answering a survey and participating in online evaluation groups to becoming an authorized representative who visits providers to see how they deliver services (National Health Service, 2009).

Nationally, the NPWF has a significant initiative to engage consumer advocates and consumers in issues related to health care reform in general and the patient-centered medical home in particular. They assembled a coalition of more than 25 of the Nation's leading consumer, labor, and health care advocacy groups to develop the Consumer Principles described in Section 1. The NPWF also developed a toolkit for consumer advocates with information to help them understand the medical home, advocate for the medical home in their community and nationally, look for opportunities to participate in the design of medical home initiatives in their area, and help explain the concept to other consumers (NPWF, 2009).

Medical home demonstrations vary in their degree of patient participation in design or oversight of implementation. A survey of 19 such demonstration projects found that only 7 involved patients in activities such as serving on a task force or advisory board, participating in focus groups or other meetings, reviewing audiovisual or written materials, or participating in quality improvement activities (Malouin, 2009). While all but 2 of the 19 pilots are collecting data on patient experiences, direct involvement of patients in policymaking appears to be limited. Other regional efforts to improve quality, such as the Aligning Forces for Quality initiative supported by the Robert Wood Johnson Foundation in 14 communities nationwide, feature consumer engagement in reporting and use of community-level data on provider quality (Robert Wood Johnson Foundation, AF4Q, 2010).


The messenger matters. When asked to participate in multistakeholder processes, consumer organizations are sensitive about who is asking for their help and whose interests are at stake. Early and ongoing engagement in a multistakeholder process may head off these concerns.

Role of patients and consumers. It is important to distinguish whether the role for consumer organizations follows community organizing principles, which indicate that patients and families get to define the topics that are important. If the role is to respond to an existing list of policy options, or if a limited set of responses can be entertained, it is important to set those ground rules from the beginning. Similarly, involving consumers in the process via advocacy groups is different from involving patients and families directly. Patients and families provide a bottom-up view of the health care as they receive it; advocates are also aware of broader policy developments and implications. It is important to have both perspectives.

Time and resources. Consumers may need ongoing support to stay involved in advocacy and system redesign. Offering opportunities for consumers to learn alongside others is important, as is providing access to the information they need. Because many advocacy organizations have limited budgets, asking them to serve on panels may take their attention away from their core jobs. Likewise, patients and families have other responsibilities. Even small stipends can help support their participation.

5. Conclusions

This paper presents a framework and offers examples of ways patients and families can become engaged in the medical home: through activities related to their care, practice improvement, and policy development. The section provides overall conclusions about the rationale and evidence for patient engagement in all three areas. In addition, we identify, from our literature review and input from key informants, key themes that affect the feasibility and successful implementation of patient engagement strategies.

  • As articulated by the IOM, patient-centeredness is an independent aim of the health care system, and the diverse stakeholders among our expert panel and key informants agreed on the value of patient engagement as a way of achieving it. However, they held disparate views about the level of evidence needed to buttress policy efforts to promote patient engagement in the medical home and more broadly throughout the health care system. For some, efforts to promote engagement should be supported as a means of achieving patient-centeredness and not judged by their impact on the IOM’s other quality aims, including effectiveness and efficiency.
  • Other stakeholders were troubled by the limitations of the evidence base for particular strategies and argued for the need for better evidence about impact and feasibility. With health care costs rising and budgets tightening, they questioned whether primary care practices and the health care system generally should be expected to invest in new and unproven methods to engage patients and families in care. In particular, they questioned whether engaging patients in practice improvement was necessary, feasible, or desirable, particularly if such efforts distract overburdened clinicians and practice staff from efforts to involve patients in the critical work of participating in their own care. One expert panelist recommended leaving these issues to market forces and allowing patients to seek practices that match their preferences for engagement; other panelists felt this was unlikely to be a successful strategy.

The existing evidence base for patient engagement in general, and the effectiveness and feasibility of specific approaches in particular, is limited and variable. For patient engagement in care of the individual, there is good evidence that specific interventions can improve patient knowledge, self-efficacy, and some outcomes, and reductions in utilization or costs of care have been reported in some studies. The best evidence relates to patient engagement strategies incorporated in multifaceted interventions like the Chronic Care Model, where it is difficult to break out the impact of specific components. Other intervention studies are small or lack generalizability to routine primary care practice. Efforts to involve patients in practice improvement and policy are usually the expression of a fundamental value consistent with the IOM goal of patient-centeredness, and therefore research evidence of impact on outcomes or costs is very limited.

  • Currently, efforts to engage patients in their own care, practice improvement, or policy are not common. Many examples are drawn from research or demonstration initiatives, and adoption may be limited as a result of the evidence concerns noted above. Both financial and logistical barriers limit implementation. Traditional fee-for-service reimbursement does not reward practices for engaging patients. The infrastructure, time, resources, and culture change needed to transform a practice to a patient-centered focus is significant. Practices need assistance with redesign to engage patients and families. Payment reform may be critical to supporting engagement in care, but also engagement in practice design, since the tasks of getting patient and feedback and implementing changes to improve quality require time and resources. Small primary care practices in particular need access to resources for and assistance with practice redesign to accomplish meaningful patient engagement.

Nonetheless, the existing efforts to support patient engagement in care, practice improvement, and policy suggest key lessons about successful implementation. Overall, key informants discussed the importance of a commitment to patient-centeredness as a core belief to the successful implementation of patient engagement strategies. They noted some key themes that embody this core commitment:

  • Asking patients and families what matters most to them is critical to engaging them in care. Asking patients and families about their views of their health needs, understanding the context of their lives, and learning about their values and preferences are important steps in effectively engaging families in their care and providing effective care. Understanding what matters most to patients is crucial to helping them to develop a care plan and follow through with self-care. Key informants noted that efforts to engage patients in self-care must be grounded in a commitment to let patients and families lead even when it challenges the clinicians’ views. In addition, seeking input from patients and families on what is working in the care process and care delivery can help practices to respond and improve in a timely way. Surveys can provide a representative snapshot of care in the practice. Informal inquiries or qualitative efforts can aid in understanding of the sources of problems and identification of possible solutions, and patients and families can help to improve care through participation in practice workgroups. Several experts told us that the suggestions given by patients and families are typically practical and discrete, and that practices and organizations which involve patients and families learn quickly how valuable this input can be.
  • Health care providers and patients need new skills to support partnership in care, improvement, and policy design. For many patients and families, the opportunity to become engaged in care, improvement, and policy means taking on new roles and challenges that require support and training. New skills could include self-efficacy in self-management or decisionmaking, or in serving on quality improvement teams or multistakeholder committees. Likewise, to support engagement in care, clinicians and staff may benefit from specialized training in communication skills or motivational interviewing. Practice leaders need training in building effective quality improvement teams. This skill development at the individual and practice level can support engagement at the next level through development of a cadre of informed and activated patients who can participate significantly in the design of care and of policy.
  • Patient engagement is not “one size fits all.” Flexibility and customization are needed to support populations that are diverse in education, values, health needs, preferences about their interactions with providers, and resources. Existing research suggests that offering support in different settings and modes reaches different kinds of patients. Engagement efforts should take into account patient diversity. Likewise, practices will vary in the methods they use to get input on care design and improvement. Some practices may value and sustain an ongoing patient/family advisory council, while others may find that ad hoc efforts suit the practice and their patients/families. The extent to which practices customize their care and their input process to their patients and families may be a marker of effective engagement.
  • Health IT offers the promise of making patient engagement more natural and less burdensome for both families and practices. Computer and Internet-based tools can support communication between families and providers, provide information, support skills training, allow networking among families, facilitate connections between health care providers and between health and other social services, and enable patient feedback on care. Much experimentation is under way, and research on how to improve the usability of these tools for families and health care providers is needed, as are efficient ways to update and maintain these systems. Health IT should be viewed as a tool to support well-designed care systems, not as an end in itself.

6. Implications for Research and Policy

This review suggests a number of avenues for future research and policy efforts to build the evidence base about the impact and implementation of patient engagement strategies in care, practice, and policy. In particular, it is critical that these research and policy initiatives address some of the key barriers to patient engagement, including the lack of capacity in individual practices for undertaking new interventions, the uncertainty about the costs and benefits of these interventions, the availability of trained clinicians and staff to implement them, and the lack of reimbursement or payment for new and potentially intensive interventions.

Key Research Needs

There is a solid consensus that patient engagement is integral to high-quality health care—and indeed this is recognized in the IOM’s inclusion of patient-centeredness as one of the core aims of health care and more recently in the National Priorities Partnership’s call for including patient engagement as a focus for quality measurement and improvement. Still, the evidence about the most effective and efficient interventions is variable for interventions related to patient engagement in care and almost nonexistent for patient engagement in practice improvement and policy development.

A detailed analysis of the existing evidence and likely cost-benefit of these activities for all three types of engagement would be an important first step. This review should consider a variety of endpoints, including the impact on patient and clinician and staff experiences, utilization, quality of care, outcomes of care, and cost. Desired outcomes may differ for each type of engagement. Such a review should also seek to document characteristics of the intervention (staffing, intensity), population involved (clinical and demographic characteristics), and contextual factors (such as the availability of a learning collaborative activity or organizational resources for quality improvement), as well as evidence of dissemination and sustainability outside the research setting. This evidence review should build on the framework described here, with separate attention given to each of the types and contexts of engagement. The review should identify and prioritize gaps in knowledge.

The findings of this report and input from panelists and key informants highlight areas for immediate research, both quantitative and qualitative. First, the following topics are of particular interest as regards patient engagement in individual care:

  • Impact on patient outcomes and cost of care, including patient experiences, patient activation or confidence in self-care, quality of care, patient outcomes, and costs of patient care.
  • Impact on the practice, including clinician and staff experiences; costs of implementation, including staff and clinician time required; and training, productivity, and financial viability.
  • Unintended negative consequences on the patient and the practice, such as patients’ departure from the practice or reductions in practice productivity.
  • Issues of dissemination and sustainability, including the cultural, organizational, and community factors that contribute to early adoption of interventions as well as to uptake by lagging practices. The focus should be on demonstrating models and addressing practical issues related to the effort and logistics of patient engagement interventions. Research should address what works in small versus large practices, and what services practice staff can deliver versus services available from community resources or an affiliated organization (such as a hospital, network, or health plan).
  • The role of Health IT in helping practices adopt patient engagement strategies, as well as the use of Health IT for activities intended to reach consumers.
  • Understanding how to adapt models and delivery modes to the needs of different populations, based on clinical characteristics (type of condition, level of severity), demographics (age, sex, race/ethnicity, socioeconomic status), as well as preferences for participation and confidence and interest in self-care. Of particular interest is how to adapt strategies for use with underserved populations and safety net providers.
  • Interaction with and applicability to specialty care. Do the strategies for engaging patients apply equally well in specialty care settings? What are the relative roles of primary care and specialty practices in patient engagement, and how can these entities work together?

Table 1, in the Executive Summary, summarizes some of the key questions related to each of the types of engagement.

The research needs and opportunities surrounding patient engagement in practice improvement and policy development are similar. The emphasis should be on understanding their costs and benefits and, if they appear to be promising, developing feasible and sustainable models. While randomized trials may not be feasible, there is a clear need for well-designed studies that look at different ways of involving patients or their representatives in practice and policy efforts, and to evaluate their impact. Key research questions include:

  • What are the steps to involving patients in a meaningful role in practice improvement and policymaking?
  • What types of training do patients and staff need? Who will be the trainers?
  • How can these efforts be made scalable?
  • What types of changes do patients suggest? Which are adopted? Why are some not adopted?
  • What is the impact on practice outcomes such as staff turnover and financial viability?
  • What is the impact on patient outcomes such as functional status and work productivity?
  • How might regional extension centers or other local community organizations support patient involvement in practice and policy? What role is there for Federal and State policy?
  • What type of leadership and organizational culture promotes effective patient engagement? Are these characteristics that can be changed, and if so, how? Are codes of conduct about how clinicians and patients interact with each other (such as statements of practice mission, expectations of staff, expectations of patients) useful in creating a culture conducive to meaningful involvement of patients?

Finally, better measures are needed to evaluate some of the key endpoints of patient-centeredness, patient safety, and shared decisionmaking. Methods and measures for assessing patient experiences with care are needed, in particular, low-cost and sound methodologies for incorporating patient survey results into practice workflow and improvement activities.

Policy Implications

As groundbreaking legislation supports the deployment of Health IT, the demonstration of new models of health care delivery and the extension of health care coverage to millions of Americans, ample opportunities exist for Federal and State policies to encourage patient engagement in care, practice redesign, and policy.

Expansion of Health IT. Federal and State efforts to promote meaningful use of Health IT provide important opportunities to harness these capabilities to support patient engagement. At the Federal and State levels, increased patient engagement is highlighted by meaningful-use measures that address such topics as provision of an after-visit summary and information. Importantly, these efforts to use Health IT need to be built in the context of effective care systems (e.g., an after-visit summary should contain information that supports self-care. Practice staff should have a specific role in providing and answering questions about the summary for patients).Input from patients on what information is useful and understandable (e.g., patients could review templates for summaries) should inform the summaries.

Federal requirements for demonstrating meaningful use by individual providers, as required by the American Recovery and Reinvestment Act, for 2015 and beyond can make use of ongoing experience and research to include explicit measures of patient engagement. CMS (2010) has proposed that its goals for the Stage 3 meaningful-use criteria be “consistent with other provisions of Medicare and Medicaid law, to focus on promoting improvements in quality, safety, and efficiency, focusing on decision support for national high-priority conditions, patient access to self-management tools, and access to comprehensive patient data.” The Consumer Partnership for eHealth, convened by the NPWF, notes that Health IT should support patient-centered care by focusing on “patient-facing” information uses and by using Health IT to support “care redesign that is patient-centered and information-rich” (Consumer Partnership for eHealth, undated).

Technical assistance for patient engagement. In conjunction with Federal support for Health IT, regional extension centers will be providing support to thousands of primary care practices (Office of the National Coordinator for Health IT, 2010). In addition, the Patient Protection and Affordable Care Act (PPACA) authorizes a Primary Care Extension Program to provide support and assistance to providers on topics such as health promotion, chronic-disease management, and both evidence-based and evidence-informed therapies and techniques to improve community health (PPACA, 2010a, 2010b). While no funds were appropriated for the Primary Care Extension Program, both it and the Health IT regional extension centers offer policy mechanisms for providing technical assistance to support patient engagement. These centers could also establish patient/family advisory councils or otherwise engage patient/family advocates to guide their efforts.

Demonstrations and pilots. Federal, State, and local promotion of the PCMH model provides the opportunity to explicitly demonstrate and test patient engagement—in demonstration design, in practice or delivery system redesign and evaluation, and in care. Efforts to develop accountable care organizations, responsible for both primary and subspecialty care and sometimes hospital care, also offer a significant opportunity for building and evaluating models for all three types of patient engagement.

Specific policy changes that may make innovations more feasible include:

  • Establishing operational mechanisms to support payment for specific evidence-based, patient-centered care services in the current fee-for-service environment (e.g., establishing a payment code to allow practices to bill for shared decisionmaking)
  • Encouraging measurement of key outcomes, including pooled resources for supporting low-cost or shared services for collecting patient survey data about risk factors and activation in care, as well as patient experiences and satisfaction.

As the new delivery models and technologies are implemented, it is critical that these opportunities for experimentation and innovation are used to learn more about effective ways to engage patients and families in care, practice design, and policy development. If full advantage of these opportunities is to be taken, the ongoing development and implementation of the patient-centered medical home may be best served by the explicit identification of an overarching framework for prioritizing opportunities for patient engagement; carefully designed evaluations that provide information about what works, what doesn’t, and how much it costs; and a deliberate plan for incorporating the best knowledge of effective methods for patient engagement.


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Appendix - Additional Tables

Additional Tables

Table A.1 includes examples of tools used to engage patients and families in the care of the individual patient.

Table A.2 includes examples of interventions/programs used to engage patients and families in the care of the individual patient, as well as the evidence base.

Table A.3 includes examples of ways to engage patients and families in practice design and quality improvement.

Table A.4 includes examples of ways to engage patients and families in policy.