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From patient education to patient engagement: Implications for the field of patient education
Patient Education and Counseling 78 (2010) 350–356
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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
From patient education to patient engagement: Implications for the field of patient education Jessie Gruman a,*, Margaret Holmes Rovner b, Molly E. French c, Dorothy Jeffress a, Shoshanna Sofaer d, Dale Shaller e, Denis J. Prager f a
Center for Advancing Health, Washington, DC, USA Michigan State University, East Lansing, MI, USA Potomac Health Consulting, Arlington, VA, USA d Baruch College, City University of New York, New York City, NY, USA e Shaller Consulting, Stillwater, MN, USA f Strategic Consulting Services, Clyde Park, MT, USA b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 1 April 2009 Received in revised form 2 February 2010 Accepted 3 February 2010
Objective: Advances in health care require that individuals participate knowledgeably and actively in their health care to realize its full benefit. Implications of these changes for the behavior of individuals and for the practice of patient education are described. Methods: An ‘‘engagement behavior framework’’ (EBF) was compiled from literature reviews and key informant interviews. To assess the focus of research and interventions on the identified engagement behaviors, the EBF was used to code scientific sessions in professional conferences relevant to patient education in the US in 2006–2007. Results: Many specific behaviors constitute engagement. Professional conferences on patient education show only modest attention to the full range of relevant behaviors. Conclusion: People must make informed choices about insurance and clinicians, coordinate communications among providers and manage complex treatments on their own. Not doing so risks preventable illness, suboptimal outcomes and wasted resources. Practice Implications: Increased responsibilities of individuals, sick and well, to find and actively participate in high quality health care provides an opportunity for patient education researchers and clinicians to improve health outcomes by developing innovative strategies to support all individuals to effectively participate in their care to the extent possible. ß 2010 Elsevier Ireland Ltd. All rights reserved.
Keywords: Patient engagement Patient participation Patient activation Self-management Consumer roles in health care
1. Introduction Health care providers’ and health plans’ expectations of patient involvement are rapidly changing. Today, sick or well, people will not benefit from their health care unless they bring to bear considerable knowledge, skills and motivation to participate actively in the care that is available to them. Yet, no one has systematically identified the full range of behaviors that are explicitly or implicitly expected of ‘‘engaged’’ patients. For example, innovations in surgical care mean that individuals now return from the hospital quicker but sicker [1,2,3]. Once home they must adhere to drug, wound-healing, dietary and rehabilitation recommendations – often on their own – if they are to heal
* Corresponding author at: Center for Advancing Health, 2000 Florida Avenue NW, Suite 210, Washington, DC 20009-1231, USA. Tel.: +1 202 387 2829; fax: +1 202 387 2857. E-mail address: [email protected] (J. Gruman). 0738-3991/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2010.02.002
optimally [4,5,6]. Similarly, new pharmaceuticals and devices make it possible for those with chronic conditions to live long and well but only if they are able to manage the demands of often complex drug and lifestyle recommendations, such as those associated with diabetes, asthma and HIV/AIDS [7–10]. And increases in the number and variety of physician specialties, care delivery sites, diagnostic tests and treatments mean that individuals face more health care choices that are consequential. They also often find they must take the initiative to coordinate information and services for themselves and their families [11– 14]. The consequences of non-participation include preventable illness and suffering, suboptimal outcomes and wasted resources. Some of these new responsibilities result from refinements in interventions or the drive to make care more efficient by delivering equivalent or superior care while minimizing demands placed on professionals [15,16]. Others arise from a fragmented care delivery system that hasn’t kept pace with emerging needs to coordinate information [17,18]. Still others come from a change away from a paternal, authoritative style of medicine toward a model that has
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demonstrated that patients do better when they have a say in their own care [19,20]. Regardless of the reason for the change in the patient’s role, these developments assume and require knowledgeable, sustained participation by patients, regardless of their age, sex, ethnicity, income or health status. Judith Hibbard, a leading theorist and researcher in patient engagement, has measured the public’s attitudes about performing key behaviors that constitute engagement. In a 2007 study, she and her colleagues found that while 23% of respondents in a representative US sample had adopted new health-related behaviors, they were not confident that they would be able to maintain them in the face of life stress or health crises [21]. The remaining 77% ranged from believing they could remain passive recipients of care (12%), to not having basic facts connecting them to their health or their recommended regimens (29%) to having some facts but not having the confidence and skill to act on them. Similarly, an analysis from the Medicare Current Beneficiary Survey found that about only 30% of older people report feeling that they possess both the motivation and skills to engage fully in their health care. [22] These data are part of a growing literature documenting the lag between expectations and people’s actual performance of behaviors related to participation in their care. Concern about this lag between expectations and performance has spread to employers, government payers, politicians, health plan administrators, technology developers, labor leaders and patient advocates who now use the term patient or consumer ‘‘engagement’’ in health care when discussing various policies and programs. They have joined efforts of researchers and practitioners to address it. Such efforts include the patient-centered care and medical home movements [23,24] and implementation of the Chronic Care Model aim to influence provider behavior and practice design. [25]. The shared decision-making movement has developed tools and provider training to support more meaningful provider–patient interactions about treatment decisions. [26,27] The movement for increased public reporting on the comparative quality of health plans, hospitals and other health facilities has produced and disseminated web-based and printed tools to support informed choices. Other efforts to increase people’s engagement in their care have focused on chronic disease selfmanagement [28] and provisions of incentives for behavior change [29]. And behavioral researchers have developed interventions for cross-cutting individual health care-related behaviors, such as patient–provider communication and medication adherence [30,31]. Clearly such efforts are needed. But have they kept up with the new behavioral demands that accrue to individuals due to changes in the health care environment? In this paper we ask two questions: (1) what is the full range of actions individuals are now expected to perform if they are to optimally benefit from their health care? And (2) to what extent does patient education currently address them? We report a multi-stage initiative to assemble a comprehensive framework of measurable behaviors that individuals must perform in order to benefit from their care. We then map these behaviors to reports of patient education research and intervention to assess the concordance between this definition and the focus of the field. Our approach takes a lesson from those who measure health care quality. They have learned that identifying and measuring specific behaviors that in themselves constitute better quality care is the most effective way to drive quality improvement efforts. To borrow a phrase from this movement, ‘‘what gets measured gets done.’’ We use ‘‘patient’’ to describe individuals when they are interacting directly with health care providers and services about personal health concerns. We use ‘‘consumers’’ to describe individuals when they are making decisions about obtaining
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health care—choosing among plans, providers, and hospitals, for example. 2. Methods 2.1. Development of a conceptual framework We developed a working definition of engagement as ‘‘actions individuals must take to obtain the greatest benefit from the health care services available to them.’’ This definition emphasizes the role of the individual independent of changes aimed at improving the effectiveness of the health care system. A specific list of ‘‘engagement’’ behaviors was developed by Hibbard et al. in 2004 [32]. Hibbard’s aim was to identify the smallest number of key behaviors that could indicate attitudes and intentions toward engagement in order to develop a parsimonious survey instrument. Our aim was to expand this list for the purposes of assembling a detailed, comprehensive picture of the implicit demands posed to individuals by current health care delivery practices. Hibbard’s list of behaviors served as the core of the engagement behavior framework (EBF) and was supplemented by behaviors identified through the activities described below. Because ‘‘engagement’’ is a term used by a variety of health stakeholders whose perspectives are not represented in the research literature, we used a number of strategies to collect meanings of this term and to identify the behaviors those meanings imply. We reviewed the advocacy literature, research topics in the published literature and systematic reviews, and we conducted key informant interviews to assemble the draft list of behaviors. The draft list of behaviors was organized by the authors into the EBF (Table 1). It was reviewed by professionals and nonprofessionals. Their comments were integrated by a subgroup of the authors. We used the EBF as a coding scheme to perform a content analysis of scientific sessions at national professional conferences relevant to patient education in 2006–2007 to provide a rudimentary estimate of the quantity of reports on research and intervention for each of the behaviors in the framework. 2.1.1. Reviews of literatures We performed an environmental scan of 20 patient and consumer advocacy organizations such as Consumers Union and Families USA and reviewed their Web sites to collect language and white papers relevant to engagement. Organizations were selected based on a stated purpose that they advocated on behalf of the public for health and health care. Disease-specific organizations were not included in the sample. The review sought to answer two questions: (1) what do those who claim to represent the interests of patients and consumers mean when they use the word engagement, and (2) what are the specific behaviors those meanings imply? Then using the three databases most likely to cover the core research publications in individual health behavior, we searched for articles related to engagement in the years 1997–2008 using search terms specific to the relevant databases. In CINAHL, we used Keywords: of health AND behavior AND patient engagement (50 sources). In PUBMED, we used Keywords:s patient engagement AND health behaviors (231 sources). In PSYCH INFO we used health AND behavior AND patient (84 sources). Articles from non-English journals were excluded. Each study that was consistent with our definition of patient engagement was classified as describing (a) an intervention to increase engagement (either a specific behavior or general participation); (b) determinants of general or specific types of engagement; (c) descriptions of engagement generally; and (d) measures of engagement. Studies describing the physiological impact of behavioral interventions; clinician-focused interventions and professional development were excluded. Abstracts for
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Table 1 Engagement behavior framework (EBF): behaviors that constitute active engagement in health and health care. Active engagement in managing health care Consumer behaviors Prepare Compare coverage options, match to own values, needs and preferences and select affordable, quality coverage (if private insurance through self or employer is applicable) OR Gather and submit relevant eligibility documentation if applying for or seeking to maintain public insurance (e.g., Medicaid, Medicare, SCHIP), compare coverage options if applicable, match to their own values, needs and preferences, and select affordable, quality coverage. Use all available comparative performance information (including cost data) to identify prospective providers and facilities. Before seeking treatment, ascertain benefit coverage restrictions or incentives such as mental health benefits limitations, pre-certification requirements, access restrictions regarding specialists or adjunct health providers, and variables in co-pays for specific types of care or providers. Act Complete advance directives and medical power of attorney, file with personal/home records and share them with family physician and other health care providers, appropriate family and/or significant others. Review annually and update as needed. Maintain or adjust coverage in the event of employment, eligibility or family status changes, (i.e., change of job, marriage, divorce, birth of child). Find provider(s) who meet personal criteria (e.g., performance, cost, geographic access, personal style), are taking new patients, and accept your insurance.
Patient behaviors Prepare Establish a relationship with a health care professional or group. Seek and access the appropriate health care setting when professional attention is required. Make appointments; inquire about no-show policies; arrive on time. Assess whether facility can accommodate unique needs (e.g., physical navigation, hearing or visual impairment, translation services) and arrange for assistance when necessary. Prepare in advance, a list of questions/issues for discussion during the visit with the health care professional.
Interact Bring a list of all current medications (including supplements and ‘‘alternative’’ products) and be prepared to discuss their benefits and side effects. Bring documentation of health insurance coverage. Bring another person to assist patient if frail, confused, unable to move around or unable to remember the conversation with the provider. Bring a summary of medical history, current health status and recent test results to visits as appropriate. Report accurately on the history and current status of physical and mental symptoms. Ask about the evidence for the efficacy of recommended treatment options (risks and benefits). Learn about any newly prescribed medications including possible side effects or interactions with existing medications. Evaluate screening / diagnostic tests in discussion with health care provider. Negotiate a treatment plan with the provider and follow through, including making future appointments for treatment and/or testing. Ask questions when any explanations or next steps are not clear.
Follow up Gather additional expert opinions on any serious diagnosis prior to beginning any course of treatment. Ensure that relevant medical information is conveyed between providers and institutions. Follow up on referrals for treatment, diagnostic testing and early detection screenings (e.g., breast cancer, colon cancer). Fill or refill prescriptions on time, monitor medication effectiveness and consult with prescribing clinician before discontinuing use. Maintain all receipts for drugs, devices and services; submit any documentation of services and/or payments upon request or as needed for third-party payers (e.g., private insurance, medical/flexible health savings accounts or public payers). Obtain all test results and appointment records and maintain personal health record.
Active engagement in managing health Patient: chronic disease self-management behaviors Prepare Understand patient’s disease(s), the risks and benefits of treatment options and personal behavior change(s) by seeking opportunities to improve health/disease knowledge. Evaluate treatment options. Identify and secure services that support changing behavior to maximize health and functioning and maintain those changes over time. Act Manage symptoms by following treatment plans, including diet, exercise, and substance use agreed upon by patient and provider. Monitor symptoms/condition (e.g., for diabetes-regular glucose monitoring, checking feet; for depression-medication and/or counseling and monitoring symptoms; for hypertension-regular measurement of blood pressure, blood pressure diary) including danger signs that require urgent attention. Know health targets (e.g., what one’s blood pressure should be) and act to meet those targets. Consumer: healthy behaviors Prepare Assess personal risks for poor health, disease and injury and seek opportunities to increase knowledge about health and disease prevention. Set priorities to change behavior to optimize health and prevent disease. Identify resources and secure support (as needed) for healthy behaviors.
Act Exercise regularly. Eat a balanced diet. Maintain recommended body weight. Not use tobacco products; not abuse alcohol or other substances. Act to prevent injuries at work, home, play and in transit. Get recommended vaccines and participate in community-offered screening/wellness activities as appropriate. Practice safe sex behaviors. Get adequate sleep. Reduce stress. Build and maintain relationships and social connections.
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Table 2 Health education reviewed conferences and sample size. Organization
Conference title
Source
Total no. of conference sessions
Academy Health
Annual Research Meeting 2007 (June 3–5, 2007, Orlando, FL) 134th Annual Meeting and Exposition. Public Health and Human Rights (November 4–8, 2006, Boston, MA)
http://www.academyhealth.org
1130
226 (20%)
Printed proceedings, using abstracts published at http://apha.confex.com/apha/ 134am/techprogram/ Printed proceedings
5283
1056 (20%)
960
193 (20%)
225 (100%)
American Public Health Association (APHA)
American Society on Aging and National Council on Aging (joint conference) (ASA/NCOA) Centers for Disease Control and Prevention and the Office of Disease Prevention and Health Promotion (CDC) Gerontological Society of America (GSA) Society for Behavioral Medicine (SBM)
Society for Public Health Educators (SOPHE)
2007 Joint Conference. Let us Rethink Aging (March 7–10, 2007, Chicago, IL)
Sessions sampled
2006 National Prevention and Health Promotion Summit Conference (September 12–14, 2006, Atlanta, GA)
Printed proceedings
225
59th Annual Scientific Meeting. Education & the Gerontological Imagination (November 16–20, 2006, Dallas, TX) 2007 Annual Meeting & Scientific Sessions.
Printed proceedings
2244
449 (20%)
Printed proceedings
852
170 (20%)
http://www.sophe.org/upload/ 47895_SOPHE_Program_Body_ 638138292_12112006122311.pdf
114
114 (100%)
Science to Impact: The Breadth of Behavioral Medicine (March 21–24, 2007 Washington, DC) 57 Annual Meeting. Health as a Human Right: Health Education, Equality and Social Justice for All (November 2–4, 2007, Boston, MA)
all articles retrieved using this search algorithm were reviewed. We reviewed 365 articles to identify behaviors to be included in the draft list. The Cochrane Library was first searched using the terms, ‘‘patient participation, patient engagement, and patient activation’’. The full list of reviews in the Cochrane Consumers Group library was then hand-searched to find systematic reviews relevant to the broad definition of engagement. Relevant reviews were searched to identify behaviors from the research literature, which were added to the draft list. To ensure that we had not overlooked any behaviors in our broad search of the research literature, we reviewed the comprehensive collection and analysis of systematic reviews of patient-focused interventions by Coulter and Ellins [31]. To construct the EBF, each of the behaviors we collected through these activities were classified as serving two broad sets of individual aims: (1) ‘‘managing health care,’’ and (2) ‘‘managing health’’ (Table 2). Within each aim, behaviors were further categorized by function. Within ‘‘managing health care,’’ behaviors were classified as those related either to the role of patient in the medical encounter or to the consumer–purchaser of health care services. These two very different roles are expected to work in seamless coordination as people move in and out of illnesses and navigate the course of seeking care and making treatment decisions. Within ‘‘managing health,’’ the behaviors were classified as those shown to prevent disease and those associated with the successful self-management of chronic disease. 2.1.2. Key informant interviews We identified 57 key informants through the advocacy and literature reviews and conducted semi-structured telephone interviews with representatives of consumer/patient groups, labor unions, purchasers, and health plans and universities who had conducted research and/or written and spoken publicly about patient or consumer engagement. The aim was to obtain interviewees’ definitions of engagement and to ask them to identify the behaviors that constitute engagement. The individuals were identified through the literature reviews described above, media reports and referrals from interviewees in response to
requests for names of ‘‘key leaders in patient and consumer engagement.’’ 2.1.3. Construction of the engagement behavior framework Starting with the comprehensive list of 76 items compiled from these diverse activities, the authors participated in a series of iterative telephone and in-person meetings to winnow and organize the list. In order, the aims of the gatherings were to (a) identify duplications in the draft list; (b) combine and explicate draft items to ensure continuity of detail; (c) identify a meaningful organizational framework; and (d) revisit the organizational framework, item assignment and wording of behaviors. Face validity of the draft framework was tested by obtaining reviews from 30 people: 15 physicians and nurses, eight researchers and seven individuals with no professional connection with health care. These reviewers were asked to eliminate, combine and add items and to suggest wording changes. Three authors (JG, DJ, MHR) adjudicated the reviewers’ comments and were unanimous in agreement on the final list. 2.1.4. Health/patient education conference review Published conference proceedings or program schedules of seven major national scientific conferences addressing health behaviors and patient education held in 2006–2007 were gathered. All sessions were reviewed for the two conferences with fewer than 500 sessions. A randomly chosen sample of 20% of the offerings was obtained for conferences with over 500 sessions (see Table 2) by reviewing every fifth submission. For each of the 2433 sessions in the sample, session titles and abstract or summary were reviewed against the following criteria to determine if the session concerned one or more interventions to engage consumers in the behaviors listed in the EBF. The session title or summary/abstract had to meet both of the following criteria to qualify as a ‘‘matching session:’’ (a) the session had an intervention (including behavioral therapy) that related to a behavior in the EBF; and (b) the session intervention related to engaging or enabling a patient or consumer population to adopt one or more engagement behaviors. Sessions were excluded if they presented only basic or epidemiologic research, reported interventions aimed at health professionals, or
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addressed population health with no reference to changing behavior. Using session title and summary or abstract, reviewers gave each matching session a code for a behavior in the EBF. Assignment of a single code to each session, even if the session intervention related to multiple engagement behaviors, avoided double counting of sessions. To develop coder agreement we individually coded the first 40 sessions, then compared results for each session to resolve discrepancies. Ambiguity in subsequent coding sessions was resolved on a case-by-case basis between the two reviewers. 3. Results 3.1. Literature review: engagement behavior framework The advocacy literature review identified behaviors related to navigating care, information-seeking, informed decision-making and consumer-related behaviors associated with access to care (e.g., choosing a health plan) and maintaining personal health records. The literature topic review identified range of engagement behaviors on which research has been conducted. In order of frequency, the behaviors were related to mental health and substance abuse treatment adherence, chronic disease selfmanagement, health promotion and disease prevention, and patient representation in health policy and planning. Review topics from the Cochrane Library suggest that the most well-developed interventions to increase engagement are directed at modifying patient medication compliance, chronic disease selfmanagement, and traditional behaviors associated with promoting health and preventing disease: smoking, diet and exercise. Interventions directed at enhancing clinical encounters have largely focused on encouraging patients to ask questions through coaching or written encouragement. The Coulter and Ellins reviewed systematic reviews primarily of interventions to increase self-care, health literacy, and clinical decision-making [31]. They found few trials or systematic reviews describing interventions to support finding and choosing plans, doctors or hospitals and managing the administrative aspects of using care and maintaining care records. Behaviors identified through key informant interviews varied by stakeholder perspective and expanded the lists derived from the literature reviews. Consumer and advocacy groups and labor representatives equated engagement to behaviors related to access (choice of plan and provider), information-seeking and shared decision-making. Purchasers (government payers and employers) identified these behaviors as well as participation in screening and disease management. Health plan representatives identified compliance with health promotion, disease prevention and disease self-management recommendations as key. The EBF, while divided into two categories, is not hierarchical and does not reflect relative efficacy for preventing disease, disability or difficulties in access to care. The purpose of this list is to present a comprehensive view of the behavioral tasks that characterize the typical demands on adults in the US when seeking and using health care. 3.2. Health behavior and health education conference review Among all 2433 conference sessions in the sample, only 23% (n = 520) entailed research or programmatic activities related to behaviors included in the EBF. Among these matching sessions, the vast majority of conference activity related to engaging people in practicing health promoting behaviors (60%, n = 311 sessions). The general self-management of chronic disease and other conditions was second most frequent (13%, n = 69). Multi-level interventions
to improve general engagement in health care (such as at the community, health care system, and/or individual levels) were the third most frequent (10%, n = 53), followed by developing people’s capacity to interact effectively with health care institutions (7%, n = 35). Three-fifths (59%, n = 306) of the matching sessions reported on research and interventions directed toward developing people’s capacity to take general actions for their health (such as training family caregivers how to manage their care recipient’s chronic conditions). In contrast, many fewer presentations pertained to helping people gain knowledge and information about their health and health care (13%, n = 66). The remainder of matching sessions had both components (that is, informing/educating and taking action) or were indefinite. 4. Discussion and conclusion 4.1. Discussion The engagement behavior framework represents a robust qualitative description of the behaviors individuals in the US must perform to optimally benefit from their care. The mapping of the EBF onto the content analysis of presentations at conferences relevant to patient education showed that current research and practice in patient education presently pays attention to only some of the behaviors needed to provide people the knowledge, skills and motivation to take them on. A behavioral definition of engagement has the potential to serve three broad purposes. First, as a necessary precursor to assessing the size and scope of the challenge that engagement poses to individuals: we need to learn to what extent people are performing the specific actions that are linked to benefiting from their health care. Such an effort could be extended to monitor and report on changes in the public’s engagement behavior. This would serve two other important aims: it would provide a focus for stakeholder initiatives to support their constituents’, members’ or patients’ efforts to care for themselves and their families. And it would enable strategic tailoring and targeting of interventions to support the capacity of all individuals to engage in their health and health care. A behavioral definition of engagement also serves a purpose for the field of patient education. As patient and consumer responsibilities grow, so does the need for basic, applied, intervention and evaluation research and its application to ensure effective support for individuals. Listing the behaviors expected of all individuals raises the question of who is vulnerable and is particularly at risk of preventable illness and suffering as a result of their own inaction or from penalties imposed by how health plans are structured [33,34]. The literature is replete with examples demonstrating that people who are usually at increased risk for poor health are also less likely to perform specific health behaviors: those without insurance, [35–37] those with fewer resources, [38] those with less education [39] and low health literacy [40,41], older people [42] and many of those who are already ill [43]. The requirement that all individuals actively and knowledgeably participate in their health care to obtain the benefits of safe, decent care further disadvantages such individuals and may contribute to increased disparities in health outcomes [44]. 4.2. Conclusions Regardless of improvements in access to and organization and financing of health care, most people will need to perform most of the behaviors listed in the engagement behavior framework at some point if they are to optimally benefit from the health care
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available to them. Many will step up to the challenge, but others will not be able to do so without guidance and support and some will never manage some of these tasks. The cost of people’s inaction is born most heavily by individuals and families in the form of preventable suffering. But the cost to society of ignoring the challenge to individuals posed by health care whose success increasingly depends on their effective participation is also high: wasted resources, suboptimal outcomes, and increases in health disparities. The field of patient education uniquely possesses the theories, methods and approaches that can lead efforts to address this challenge. 4.3. Practice implications The growing imperative that people play an active, effective part in their health care offers researchers and practitioners of patient education the opportunity to provide the theoretical, empirical and professional leadership to support such participation. The magnitude of the behavioral demands that these often unrecognized requirements place on individuals – sick and well – is significant. Patient education professionals can develop targeted public education campaigns, explore innovative uses of technology and strategies to deliver timely information, devise new professional roles and design and implement arrangements for the public with particular attention to those for whom these new demands constitute insurmountable barriers. Conflicts of interest No conflicts of interest are declared. Acknowledgements The authors acknowledge the contributions of Nancy Maddox who assisted in coding and content analysis of professional conferences. Contributors: JG devised and conducted the key informant interviews, and provided overall intellectual guidance. SS contributed to problem framing and conceptual analysis. MHR and MF developed the conference review protocol and search strategy. MF undertook conference materials data-extraction. JG and DJ contributed to the initial drafts. All authors contributed to the final manuscript. Role of Funding: Supported in part by grants from the Atlantic Philanthropies, the Annenberg Foundation and by a sabbatical leave from Michigan State University (MHR). Competing interests: None declared. Ethical approval: Not required. References [1] Baker DW, Einstadter D, Husak SS, Cebul RD. Trends in postdischarge mortality and readmissions: has length of stay declined too far? Arch Intern Med 2004;164:538–44. [2] Metersky ML, Tate JP, Fine MJ, Petrillo MK, Meehan TP. Temporal trends in outcomes of older patients with pneumonia. Arch Intern Med 2000;160:3385– 91. [3] Aranda Jr JM, Johnson JW, Conti JB. Current trends in heart failure readmission rates: analysis of Medicare data. Clin Cardiol 2009;32:47–52. [4] Kugler C, Feuhner T, Dierich M, DeWall C, Haverich A, Simon A, et al. Effect of adherence to home spirometry on bronchiolitis obliterans and graft survival after lung transplantation. Transplantation 2009;88:129–34. [5] Fraser TG, Stosor V, Wang Q, Allan A, Zembower. Vancomycin and home health care. Emerg Infect Dis 2005;11:1558–64. [6] Reynolds MA. Postoperative pain management discharge teaching in a rural population. Pain Manag Nurs 2009;10:76–84. [7] Ripsin CM, Kang H, Urban RJ. Management of blood glucose in type 2 diabetes mellitus. Am Fam Physician 2009;79:29–36.
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Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
From patient education to patient engagement: Implications for the field of patient education Jessie Gruman a,*, Margaret Holmes Rovner b, Molly E. French c, Dorothy Jeffress a, Shoshanna Sofaer d, Dale Shaller e, Denis J. Prager f a
Center for Advancing Health, Washington, DC, USA Michigan State University, East Lansing, MI, USA Potomac Health Consulting, Arlington, VA, USA d Baruch College, City University of New York, New York City, NY, USA e Shaller Consulting, Stillwater, MN, USA f Strategic Consulting Services, Clyde Park, MT, USA b c
A R T I C L E I N F O
A B S T R A C T
Article history: Received 1 April 2009 Received in revised form 2 February 2010 Accepted 3 February 2010
Objective: Advances in health care require that individuals participate knowledgeably and actively in their health care to realize its full benefit. Implications of these changes for the behavior of individuals and for the practice of patient education are described. Methods: An ‘‘engagement behavior framework’’ (EBF) was compiled from literature reviews and key informant interviews. To assess the focus of research and interventions on the identified engagement behaviors, the EBF was used to code scientific sessions in professional conferences relevant to patient education in the US in 2006–2007. Results: Many specific behaviors constitute engagement. Professional conferences on patient education show only modest attention to the full range of relevant behaviors. Conclusion: People must make informed choices about insurance and clinicians, coordinate communications among providers and manage complex treatments on their own. Not doing so risks preventable illness, suboptimal outcomes and wasted resources. Practice Implications: Increased responsibilities of individuals, sick and well, to find and actively participate in high quality health care provides an opportunity for patient education researchers and clinicians to improve health outcomes by developing innovative strategies to support all individuals to effectively participate in their care to the extent possible. ß 2010 Elsevier Ireland Ltd. All rights reserved.
Keywords: Patient engagement Patient participation Patient activation Self-management Consumer roles in health care
1. Introduction Health care providers’ and health plans’ expectations of patient involvement are rapidly changing. Today, sick or well, people will not benefit from their health care unless they bring to bear considerable knowledge, skills and motivation to participate actively in the care that is available to them. Yet, no one has systematically identified the full range of behaviors that are explicitly or implicitly expected of ‘‘engaged’’ patients. For example, innovations in surgical care mean that individuals now return from the hospital quicker but sicker [1,2,3]. Once home they must adhere to drug, wound-healing, dietary and rehabilitation recommendations – often on their own – if they are to heal
* Corresponding author at: Center for Advancing Health, 2000 Florida Avenue NW, Suite 210, Washington, DC 20009-1231, USA. Tel.: +1 202 387 2829; fax: +1 202 387 2857. E-mail address: [email protected] (J. Gruman). 0738-3991/$ – see front matter ß 2010 Elsevier Ireland Ltd. All rights reserved. doi:10.1016/j.pec.2010.02.002
optimally [4,5,6]. Similarly, new pharmaceuticals and devices make it possible for those with chronic conditions to live long and well but only if they are able to manage the demands of often complex drug and lifestyle recommendations, such as those associated with diabetes, asthma and HIV/AIDS [7–10]. And increases in the number and variety of physician specialties, care delivery sites, diagnostic tests and treatments mean that individuals face more health care choices that are consequential. They also often find they must take the initiative to coordinate information and services for themselves and their families [11– 14]. The consequences of non-participation include preventable illness and suffering, suboptimal outcomes and wasted resources. Some of these new responsibilities result from refinements in interventions or the drive to make care more efficient by delivering equivalent or superior care while minimizing demands placed on professionals [15,16]. Others arise from a fragmented care delivery system that hasn’t kept pace with emerging needs to coordinate information [17,18]. Still others come from a change away from a paternal, authoritative style of medicine toward a model that has
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demonstrated that patients do better when they have a say in their own care [19,20]. Regardless of the reason for the change in the patient’s role, these developments assume and require knowledgeable, sustained participation by patients, regardless of their age, sex, ethnicity, income or health status. Judith Hibbard, a leading theorist and researcher in patient engagement, has measured the public’s attitudes about performing key behaviors that constitute engagement. In a 2007 study, she and her colleagues found that while 23% of respondents in a representative US sample had adopted new health-related behaviors, they were not confident that they would be able to maintain them in the face of life stress or health crises [21]. The remaining 77% ranged from believing they could remain passive recipients of care (12%), to not having basic facts connecting them to their health or their recommended regimens (29%) to having some facts but not having the confidence and skill to act on them. Similarly, an analysis from the Medicare Current Beneficiary Survey found that about only 30% of older people report feeling that they possess both the motivation and skills to engage fully in their health care. [22] These data are part of a growing literature documenting the lag between expectations and people’s actual performance of behaviors related to participation in their care. Concern about this lag between expectations and performance has spread to employers, government payers, politicians, health plan administrators, technology developers, labor leaders and patient advocates who now use the term patient or consumer ‘‘engagement’’ in health care when discussing various policies and programs. They have joined efforts of researchers and practitioners to address it. Such efforts include the patient-centered care and medical home movements [23,24] and implementation of the Chronic Care Model aim to influence provider behavior and practice design. [25]. The shared decision-making movement has developed tools and provider training to support more meaningful provider–patient interactions about treatment decisions. [26,27] The movement for increased public reporting on the comparative quality of health plans, hospitals and other health facilities has produced and disseminated web-based and printed tools to support informed choices. Other efforts to increase people’s engagement in their care have focused on chronic disease selfmanagement [28] and provisions of incentives for behavior change [29]. And behavioral researchers have developed interventions for cross-cutting individual health care-related behaviors, such as patient–provider communication and medication adherence [30,31]. Clearly such efforts are needed. But have they kept up with the new behavioral demands that accrue to individuals due to changes in the health care environment? In this paper we ask two questions: (1) what is the full range of actions individuals are now expected to perform if they are to optimally benefit from their health care? And (2) to what extent does patient education currently address them? We report a multi-stage initiative to assemble a comprehensive framework of measurable behaviors that individuals must perform in order to benefit from their care. We then map these behaviors to reports of patient education research and intervention to assess the concordance between this definition and the focus of the field. Our approach takes a lesson from those who measure health care quality. They have learned that identifying and measuring specific behaviors that in themselves constitute better quality care is the most effective way to drive quality improvement efforts. To borrow a phrase from this movement, ‘‘what gets measured gets done.’’ We use ‘‘patient’’ to describe individuals when they are interacting directly with health care providers and services about personal health concerns. We use ‘‘consumers’’ to describe individuals when they are making decisions about obtaining
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health care—choosing among plans, providers, and hospitals, for example. 2. Methods 2.1. Development of a conceptual framework We developed a working definition of engagement as ‘‘actions individuals must take to obtain the greatest benefit from the health care services available to them.’’ This definition emphasizes the role of the individual independent of changes aimed at improving the effectiveness of the health care system. A specific list of ‘‘engagement’’ behaviors was developed by Hibbard et al. in 2004 [32]. Hibbard’s aim was to identify the smallest number of key behaviors that could indicate attitudes and intentions toward engagement in order to develop a parsimonious survey instrument. Our aim was to expand this list for the purposes of assembling a detailed, comprehensive picture of the implicit demands posed to individuals by current health care delivery practices. Hibbard’s list of behaviors served as the core of the engagement behavior framework (EBF) and was supplemented by behaviors identified through the activities described below. Because ‘‘engagement’’ is a term used by a variety of health stakeholders whose perspectives are not represented in the research literature, we used a number of strategies to collect meanings of this term and to identify the behaviors those meanings imply. We reviewed the advocacy literature, research topics in the published literature and systematic reviews, and we conducted key informant interviews to assemble the draft list of behaviors. The draft list of behaviors was organized by the authors into the EBF (Table 1). It was reviewed by professionals and nonprofessionals. Their comments were integrated by a subgroup of the authors. We used the EBF as a coding scheme to perform a content analysis of scientific sessions at national professional conferences relevant to patient education in 2006–2007 to provide a rudimentary estimate of the quantity of reports on research and intervention for each of the behaviors in the framework. 2.1.1. Reviews of literatures We performed an environmental scan of 20 patient and consumer advocacy organizations such as Consumers Union and Families USA and reviewed their Web sites to collect language and white papers relevant to engagement. Organizations were selected based on a stated purpose that they advocated on behalf of the public for health and health care. Disease-specific organizations were not included in the sample. The review sought to answer two questions: (1) what do those who claim to represent the interests of patients and consumers mean when they use the word engagement, and (2) what are the specific behaviors those meanings imply? Then using the three databases most likely to cover the core research publications in individual health behavior, we searched for articles related to engagement in the years 1997–2008 using search terms specific to the relevant databases. In CINAHL, we used Keywords: of health AND behavior AND patient engagement (50 sources). In PUBMED, we used Keywords:s patient engagement AND health behaviors (231 sources). In PSYCH INFO we used health AND behavior AND patient (84 sources). Articles from non-English journals were excluded. Each study that was consistent with our definition of patient engagement was classified as describing (a) an intervention to increase engagement (either a specific behavior or general participation); (b) determinants of general or specific types of engagement; (c) descriptions of engagement generally; and (d) measures of engagement. Studies describing the physiological impact of behavioral interventions; clinician-focused interventions and professional development were excluded. Abstracts for
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Table 1 Engagement behavior framework (EBF): behaviors that constitute active engagement in health and health care. Active engagement in managing health care Consumer behaviors Prepare Compare coverage options, match to own values, needs and preferences and select affordable, quality coverage (if private insurance through self or employer is applicable) OR Gather and submit relevant eligibility documentation if applying for or seeking to maintain public insurance (e.g., Medicaid, Medicare, SCHIP), compare coverage options if applicable, match to their own values, needs and preferences, and select affordable, quality coverage. Use all available comparative performance information (including cost data) to identify prospective providers and facilities. Before seeking treatment, ascertain benefit coverage restrictions or incentives such as mental health benefits limitations, pre-certification requirements, access restrictions regarding specialists or adjunct health providers, and variables in co-pays for specific types of care or providers. Act Complete advance directives and medical power of attorney, file with personal/home records and share them with family physician and other health care providers, appropriate family and/or significant others. Review annually and update as needed. Maintain or adjust coverage in the event of employment, eligibility or family status changes, (i.e., change of job, marriage, divorce, birth of child). Find provider(s) who meet personal criteria (e.g., performance, cost, geographic access, personal style), are taking new patients, and accept your insurance.
Patient behaviors Prepare Establish a relationship with a health care professional or group. Seek and access the appropriate health care setting when professional attention is required. Make appointments; inquire about no-show policies; arrive on time. Assess whether facility can accommodate unique needs (e.g., physical navigation, hearing or visual impairment, translation services) and arrange for assistance when necessary. Prepare in advance, a list of questions/issues for discussion during the visit with the health care professional.
Interact Bring a list of all current medications (including supplements and ‘‘alternative’’ products) and be prepared to discuss their benefits and side effects. Bring documentation of health insurance coverage. Bring another person to assist patient if frail, confused, unable to move around or unable to remember the conversation with the provider. Bring a summary of medical history, current health status and recent test results to visits as appropriate. Report accurately on the history and current status of physical and mental symptoms. Ask about the evidence for the efficacy of recommended treatment options (risks and benefits). Learn about any newly prescribed medications including possible side effects or interactions with existing medications. Evaluate screening / diagnostic tests in discussion with health care provider. Negotiate a treatment plan with the provider and follow through, including making future appointments for treatment and/or testing. Ask questions when any explanations or next steps are not clear.
Follow up Gather additional expert opinions on any serious diagnosis prior to beginning any course of treatment. Ensure that relevant medical information is conveyed between providers and institutions. Follow up on referrals for treatment, diagnostic testing and early detection screenings (e.g., breast cancer, colon cancer). Fill or refill prescriptions on time, monitor medication effectiveness and consult with prescribing clinician before discontinuing use. Maintain all receipts for drugs, devices and services; submit any documentation of services and/or payments upon request or as needed for third-party payers (e.g., private insurance, medical/flexible health savings accounts or public payers). Obtain all test results and appointment records and maintain personal health record.
Active engagement in managing health Patient: chronic disease self-management behaviors Prepare Understand patient’s disease(s), the risks and benefits of treatment options and personal behavior change(s) by seeking opportunities to improve health/disease knowledge. Evaluate treatment options. Identify and secure services that support changing behavior to maximize health and functioning and maintain those changes over time. Act Manage symptoms by following treatment plans, including diet, exercise, and substance use agreed upon by patient and provider. Monitor symptoms/condition (e.g., for diabetes-regular glucose monitoring, checking feet; for depression-medication and/or counseling and monitoring symptoms; for hypertension-regular measurement of blood pressure, blood pressure diary) including danger signs that require urgent attention. Know health targets (e.g., what one’s blood pressure should be) and act to meet those targets. Consumer: healthy behaviors Prepare Assess personal risks for poor health, disease and injury and seek opportunities to increase knowledge about health and disease prevention. Set priorities to change behavior to optimize health and prevent disease. Identify resources and secure support (as needed) for healthy behaviors.
Act Exercise regularly. Eat a balanced diet. Maintain recommended body weight. Not use tobacco products; not abuse alcohol or other substances. Act to prevent injuries at work, home, play and in transit. Get recommended vaccines and participate in community-offered screening/wellness activities as appropriate. Practice safe sex behaviors. Get adequate sleep. Reduce stress. Build and maintain relationships and social connections.
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Table 2 Health education reviewed conferences and sample size. Organization
Conference title
Source
Total no. of conference sessions
Academy Health
Annual Research Meeting 2007 (June 3–5, 2007, Orlando, FL) 134th Annual Meeting and Exposition. Public Health and Human Rights (November 4–8, 2006, Boston, MA)
http://www.academyhealth.org
1130
226 (20%)
Printed proceedings, using abstracts published at http://apha.confex.com/apha/ 134am/techprogram/ Printed proceedings
5283
1056 (20%)
960
193 (20%)
225 (100%)
American Public Health Association (APHA)
American Society on Aging and National Council on Aging (joint conference) (ASA/NCOA) Centers for Disease Control and Prevention and the Office of Disease Prevention and Health Promotion (CDC) Gerontological Society of America (GSA) Society for Behavioral Medicine (SBM)
Society for Public Health Educators (SOPHE)
2007 Joint Conference. Let us Rethink Aging (March 7–10, 2007, Chicago, IL)
Sessions sampled
2006 National Prevention and Health Promotion Summit Conference (September 12–14, 2006, Atlanta, GA)
Printed proceedings
225
59th Annual Scientific Meeting. Education & the Gerontological Imagination (November 16–20, 2006, Dallas, TX) 2007 Annual Meeting & Scientific Sessions.
Printed proceedings
2244
449 (20%)
Printed proceedings
852
170 (20%)
http://www.sophe.org/upload/ 47895_SOPHE_Program_Body_ 638138292_12112006122311.pdf
114
114 (100%)
Science to Impact: The Breadth of Behavioral Medicine (March 21–24, 2007 Washington, DC) 57 Annual Meeting. Health as a Human Right: Health Education, Equality and Social Justice for All (November 2–4, 2007, Boston, MA)
all articles retrieved using this search algorithm were reviewed. We reviewed 365 articles to identify behaviors to be included in the draft list. The Cochrane Library was first searched using the terms, ‘‘patient participation, patient engagement, and patient activation’’. The full list of reviews in the Cochrane Consumers Group library was then hand-searched to find systematic reviews relevant to the broad definition of engagement. Relevant reviews were searched to identify behaviors from the research literature, which were added to the draft list. To ensure that we had not overlooked any behaviors in our broad search of the research literature, we reviewed the comprehensive collection and analysis of systematic reviews of patient-focused interventions by Coulter and Ellins [31]. To construct the EBF, each of the behaviors we collected through these activities were classified as serving two broad sets of individual aims: (1) ‘‘managing health care,’’ and (2) ‘‘managing health’’ (Table 2). Within each aim, behaviors were further categorized by function. Within ‘‘managing health care,’’ behaviors were classified as those related either to the role of patient in the medical encounter or to the consumer–purchaser of health care services. These two very different roles are expected to work in seamless coordination as people move in and out of illnesses and navigate the course of seeking care and making treatment decisions. Within ‘‘managing health,’’ the behaviors were classified as those shown to prevent disease and those associated with the successful self-management of chronic disease. 2.1.2. Key informant interviews We identified 57 key informants through the advocacy and literature reviews and conducted semi-structured telephone interviews with representatives of consumer/patient groups, labor unions, purchasers, and health plans and universities who had conducted research and/or written and spoken publicly about patient or consumer engagement. The aim was to obtain interviewees’ definitions of engagement and to ask them to identify the behaviors that constitute engagement. The individuals were identified through the literature reviews described above, media reports and referrals from interviewees in response to
requests for names of ‘‘key leaders in patient and consumer engagement.’’ 2.1.3. Construction of the engagement behavior framework Starting with the comprehensive list of 76 items compiled from these diverse activities, the authors participated in a series of iterative telephone and in-person meetings to winnow and organize the list. In order, the aims of the gatherings were to (a) identify duplications in the draft list; (b) combine and explicate draft items to ensure continuity of detail; (c) identify a meaningful organizational framework; and (d) revisit the organizational framework, item assignment and wording of behaviors. Face validity of the draft framework was tested by obtaining reviews from 30 people: 15 physicians and nurses, eight researchers and seven individuals with no professional connection with health care. These reviewers were asked to eliminate, combine and add items and to suggest wording changes. Three authors (JG, DJ, MHR) adjudicated the reviewers’ comments and were unanimous in agreement on the final list. 2.1.4. Health/patient education conference review Published conference proceedings or program schedules of seven major national scientific conferences addressing health behaviors and patient education held in 2006–2007 were gathered. All sessions were reviewed for the two conferences with fewer than 500 sessions. A randomly chosen sample of 20% of the offerings was obtained for conferences with over 500 sessions (see Table 2) by reviewing every fifth submission. For each of the 2433 sessions in the sample, session titles and abstract or summary were reviewed against the following criteria to determine if the session concerned one or more interventions to engage consumers in the behaviors listed in the EBF. The session title or summary/abstract had to meet both of the following criteria to qualify as a ‘‘matching session:’’ (a) the session had an intervention (including behavioral therapy) that related to a behavior in the EBF; and (b) the session intervention related to engaging or enabling a patient or consumer population to adopt one or more engagement behaviors. Sessions were excluded if they presented only basic or epidemiologic research, reported interventions aimed at health professionals, or
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addressed population health with no reference to changing behavior. Using session title and summary or abstract, reviewers gave each matching session a code for a behavior in the EBF. Assignment of a single code to each session, even if the session intervention related to multiple engagement behaviors, avoided double counting of sessions. To develop coder agreement we individually coded the first 40 sessions, then compared results for each session to resolve discrepancies. Ambiguity in subsequent coding sessions was resolved on a case-by-case basis between the two reviewers. 3. Results 3.1. Literature review: engagement behavior framework The advocacy literature review identified behaviors related to navigating care, information-seeking, informed decision-making and consumer-related behaviors associated with access to care (e.g., choosing a health plan) and maintaining personal health records. The literature topic review identified range of engagement behaviors on which research has been conducted. In order of frequency, the behaviors were related to mental health and substance abuse treatment adherence, chronic disease selfmanagement, health promotion and disease prevention, and patient representation in health policy and planning. Review topics from the Cochrane Library suggest that the most well-developed interventions to increase engagement are directed at modifying patient medication compliance, chronic disease selfmanagement, and traditional behaviors associated with promoting health and preventing disease: smoking, diet and exercise. Interventions directed at enhancing clinical encounters have largely focused on encouraging patients to ask questions through coaching or written encouragement. The Coulter and Ellins reviewed systematic reviews primarily of interventions to increase self-care, health literacy, and clinical decision-making [31]. They found few trials or systematic reviews describing interventions to support finding and choosing plans, doctors or hospitals and managing the administrative aspects of using care and maintaining care records. Behaviors identified through key informant interviews varied by stakeholder perspective and expanded the lists derived from the literature reviews. Consumer and advocacy groups and labor representatives equated engagement to behaviors related to access (choice of plan and provider), information-seeking and shared decision-making. Purchasers (government payers and employers) identified these behaviors as well as participation in screening and disease management. Health plan representatives identified compliance with health promotion, disease prevention and disease self-management recommendations as key. The EBF, while divided into two categories, is not hierarchical and does not reflect relative efficacy for preventing disease, disability or difficulties in access to care. The purpose of this list is to present a comprehensive view of the behavioral tasks that characterize the typical demands on adults in the US when seeking and using health care. 3.2. Health behavior and health education conference review Among all 2433 conference sessions in the sample, only 23% (n = 520) entailed research or programmatic activities related to behaviors included in the EBF. Among these matching sessions, the vast majority of conference activity related to engaging people in practicing health promoting behaviors (60%, n = 311 sessions). The general self-management of chronic disease and other conditions was second most frequent (13%, n = 69). Multi-level interventions
to improve general engagement in health care (such as at the community, health care system, and/or individual levels) were the third most frequent (10%, n = 53), followed by developing people’s capacity to interact effectively with health care institutions (7%, n = 35). Three-fifths (59%, n = 306) of the matching sessions reported on research and interventions directed toward developing people’s capacity to take general actions for their health (such as training family caregivers how to manage their care recipient’s chronic conditions). In contrast, many fewer presentations pertained to helping people gain knowledge and information about their health and health care (13%, n = 66). The remainder of matching sessions had both components (that is, informing/educating and taking action) or were indefinite. 4. Discussion and conclusion 4.1. Discussion The engagement behavior framework represents a robust qualitative description of the behaviors individuals in the US must perform to optimally benefit from their care. The mapping of the EBF onto the content analysis of presentations at conferences relevant to patient education showed that current research and practice in patient education presently pays attention to only some of the behaviors needed to provide people the knowledge, skills and motivation to take them on. A behavioral definition of engagement has the potential to serve three broad purposes. First, as a necessary precursor to assessing the size and scope of the challenge that engagement poses to individuals: we need to learn to what extent people are performing the specific actions that are linked to benefiting from their health care. Such an effort could be extended to monitor and report on changes in the public’s engagement behavior. This would serve two other important aims: it would provide a focus for stakeholder initiatives to support their constituents’, members’ or patients’ efforts to care for themselves and their families. And it would enable strategic tailoring and targeting of interventions to support the capacity of all individuals to engage in their health and health care. A behavioral definition of engagement also serves a purpose for the field of patient education. As patient and consumer responsibilities grow, so does the need for basic, applied, intervention and evaluation research and its application to ensure effective support for individuals. Listing the behaviors expected of all individuals raises the question of who is vulnerable and is particularly at risk of preventable illness and suffering as a result of their own inaction or from penalties imposed by how health plans are structured [33,34]. The literature is replete with examples demonstrating that people who are usually at increased risk for poor health are also less likely to perform specific health behaviors: those without insurance, [35–37] those with fewer resources, [38] those with less education [39] and low health literacy [40,41], older people [42] and many of those who are already ill [43]. The requirement that all individuals actively and knowledgeably participate in their health care to obtain the benefits of safe, decent care further disadvantages such individuals and may contribute to increased disparities in health outcomes [44]. 4.2. Conclusions Regardless of improvements in access to and organization and financing of health care, most people will need to perform most of the behaviors listed in the engagement behavior framework at some point if they are to optimally benefit from the health care
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available to them. Many will step up to the challenge, but others will not be able to do so without guidance and support and some will never manage some of these tasks. The cost of people’s inaction is born most heavily by individuals and families in the form of preventable suffering. But the cost to society of ignoring the challenge to individuals posed by health care whose success increasingly depends on their effective participation is also high: wasted resources, suboptimal outcomes, and increases in health disparities. The field of patient education uniquely possesses the theories, methods and approaches that can lead efforts to address this challenge. 4.3. Practice implications The growing imperative that people play an active, effective part in their health care offers researchers and practitioners of patient education the opportunity to provide the theoretical, empirical and professional leadership to support such participation. The magnitude of the behavioral demands that these often unrecognized requirements place on individuals – sick and well – is significant. Patient education professionals can develop targeted public education campaigns, explore innovative uses of technology and strategies to deliver timely information, devise new professional roles and design and implement arrangements for the public with particular attention to those for whom these new demands constitute insurmountable barriers. Conflicts of interest No conflicts of interest are declared. Acknowledgements The authors acknowledge the contributions of Nancy Maddox who assisted in coding and content analysis of professional conferences. Contributors: JG devised and conducted the key informant interviews, and provided overall intellectual guidance. SS contributed to problem framing and conceptual analysis. MHR and MF developed the conference review protocol and search strategy. MF undertook conference materials data-extraction. JG and DJ contributed to the initial drafts. All authors contributed to the final manuscript. Role of Funding: Supported in part by grants from the Atlantic Philanthropies, the Annenberg Foundation and by a sabbatical leave from Michigan State University (MHR). Competing interests: None declared. Ethical approval: Not required. References [1] Baker DW, Einstadter D, Husak SS, Cebul RD. Trends in postdischarge mortality and readmissions: has length of stay declined too far? Arch Intern Med 2004;164:538–44. [2] Metersky ML, Tate JP, Fine MJ, Petrillo MK, Meehan TP. Temporal trends in outcomes of older patients with pneumonia. Arch Intern Med 2000;160:3385– 91. [3] Aranda Jr JM, Johnson JW, Conti JB. Current trends in heart failure readmission rates: analysis of Medicare data. Clin Cardiol 2009;32:47–52. [4] Kugler C, Feuhner T, Dierich M, DeWall C, Haverich A, Simon A, et al. Effect of adherence to home spirometry on bronchiolitis obliterans and graft survival after lung transplantation. Transplantation 2009;88:129–34. [5] Fraser TG, Stosor V, Wang Q, Allan A, Zembower. Vancomycin and home health care. Emerg Infect Dis 2005;11:1558–64. [6] Reynolds MA. Postoperative pain management discharge teaching in a rural population. Pain Manag Nurs 2009;10:76–84. [7] Ripsin CM, Kang H, Urban RJ. Management of blood glucose in type 2 diabetes mellitus. Am Fam Physician 2009;79:29–36.
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