Internet Citation: 5. Improving Data Collection across the Health Care System. Content last reviewed May 2018. Agency for Healthcare Research and Quality, Rockville, MD.
Clinicians and health care staff work tirelessly to care for their patients in an increasingly complex, inefficient, and stressful environment. However, the structure, incentives, and culture of the system in which they work are often—perhaps usually—poorly aligned to support their efforts to respond to patients' needs as their core priority. Recognizing the imperative to center on the patient, a learning health care system is one in which patients and their families are key drivers of the design and operation of the learning process. When patients, their families, other caregivers, and the public are full, active participants in care, health, the experience of care, and economic outcomes can be substantially improved. Crossing the Quality Chasm underscores patient-centeredness as a core aim of the health care system, yet care often fails to meet this aim (IOM, 2001). Despite the Quality Chasm's call to action more than a decade ago, patient-centered care still is not the norm, and users continue to find the health care system uncoordinated and stressful to navigate. As the complexity of the system continues to grow with advances in science (Chapter 2), patient engagement takes on increased importance as a means of ensuring that patients can find the right care for their individual characteristics, needs, preferences, and circumstances. In these complex situations, patients and clinicians both need to be involved for optimal care. Clinicians supply information and advice based on their scientific expertise in treatment and intervention options, along with potential outcomes. Patients, their families, and other caregivers bring personal knowledge on the suitability—or lack thereof—of different treatments for the patient's circumstances and preferences. Information from both sources is needed to select the right care option. It is important to note that patient-centered care does not mean simply agreeing to every patient request. Rather, it entails meaningful engagement on the options available in order to understand the patient and establish a dialogue between patient and clinician on the evidence and the decisions in play (Epstein et al., 2010; Fowler et al., 2011). The provision of patient-centered care can be complex and time-consuming, and requires broad involvement of the patient, the family, and the care team to consider all of the issues affecting the patient's care. This chapter explores the ways in which a learning health care system can fill some of the gaps in orienting and coordinating the U.S. health care system around people's needs. First, the chapter considers what is currently known about focusing the health care system on people's needs and preferences, sets forth a vision for how the system could be improved in this regard, and summarizes the benefits of moving toward that vision. The chapter then investigates how this knowledge can be applied at different levels of the health care system, from the patient care experience to the broader system. Next is a discussion of communities of care and how they can incorporate those stakeholders not normally included in the health care system. The chapter concludes with recommendations for realizing the vision of a health care system that engages patients, families, and communities. Throughout, the discussion highlights ways in which a learning health care system can better incorporate patients, families, and the public in managing health and health care. Informed and engaged patients, invested in their own health care as well as in the improvement of the broader health care system, are crucial to a learning system. Patients bring unique and important perspectives on their own care, on the experience in health care organizations, and on the coordination and cooperation among various elements of their care. Unfortunately, patients, their families and other caregivers, and the public all too often are not meaningfully engaged in care or as partners in its improvement. Moving to the vision of a system centered on people's needs and preferences has the potential to bring multiple benefits for patients, the health care system, and the nation. As noted, more than 10 years after Crossing the Quality Chasm highlighted the crucial role of patient-centered care, such care still is not the norm, and patients continue to find the health care system uncoordinated and stressful to navigate. A 2011 survey of public views of the health care system found that patients have difficulty accessing care, experience poor care coordination, and want a system that is more integrated and patient-centered. Seven of 10 adults surveyed reported difficulty in making doctor's appointments when they needed them, getting advice over the phone, or receiving care after hours. Nearly half of adults reported problems with care coordination, notification of test results, and communications between primary care providers and specialists, and one-third said the health care system was poorly organized (Stremikis et al., 2011). The lack of patient focus is particularly evident in patient communications, especially about care options. Surveys of patients who have recently made a medical decision have found that those patients often did not receive critical information about the risks and benefits of the treatment and intervention choices under consideration (Fagerlin et al., 2010; Lee et al., 2011, 2012; Sepucha et al., 2010). These patients also reported that their clinicians stressed the benefits of interventions more than they discussed the risks, and asked patients about their preferences only half of the time (Zikmund-Fisher et al., 2010). Because modern health care often offers multiple interventions for a given condition, each with its own benefits, side effects, and costs, identifying the most valuable intervention for each patient requires both that patients be well informed about the options and that clinicians be aware of their patients' individual circumstances, preferences, and needs. The lack of patient focus in the health care system also is evident in patient transitions between care settings. Patients often report that care transitions, such as being discharged from the hospital, are abrupt. Patients often receive little information about what the next steps are in their care, when they can resume activities, what side effects or complications they should monitor, or whom they can approach with questions about their recovery. In other cases, patients receive too much information at the time of discharge, stressing their ability to remember and apply this information over the transition period. As a result of poor transitions, almost one-fifth of hospitalized Medicare patients are rehospitalized within 30 days, often without seeing their primary care provider in the interim (Jencks et al., 2009). Communications between primary care practitioners and specialists often lack critical information, and hospitals often either do not notify primary care practitioners when their patients are discharged or relay insufficient information (Bodenheimer, 2008). Transitions may be even less effective and more complex when patients' needs extend beyond traditional health care to include a broader array of health and human services, such as long-term care; mental health and substance use care; and social, economic, and community services related to wellness and healthy lifestyles. Part of the challenge is that the notion of patient-centeredness simply is not embedded in the care culture and often feels foreign, even disruptive, to clinicians unfamiliar with the concept (Berwick, 2009). Because investments in moving toward patient-centered care currently are being made on a large scale, developing a working definition of patient- or person-centered care is a matter of some urgency, especially given that patient perspectives will soon be factored into Medicare value-based payments to hospitals.1 Absent this framework, it will be impossible to assess the progress of initiatives toward the goal of improving patient focus. The difficulty is that multiple definitions of patient- or person-centered care exist, each capturing important aspects of this type of care. Moreover, the concept itself has multiple names, ranging from “patient-centered care,” to “patient- and family-centered care,” to “patient activation,” to “patient engagement,” to “public engagement.” Another challenge is determining who needs to be involved. Almost every person is a past, present, or future patient of the health care system. Moreover, each person often receives care from family caregivers, relatives, friends, and neighbors who support and assist those coping with both acute and chronic health problems, and who are vital to the patient throughout the care experience. While the term “patients” is used here for brevity, it always refers to patients, family and other caregivers, and the public. Similarly, the term “communities” includes all forms of community, such as those defined by geography, culture, disease or condition, occupation, and workplace. Recognizing the complexity of the terms involved, several individuals and organizations have developed definitions for patient-centered care. One advocate for promoting patient-centered care defines it as “the experience (to the extent the informed, individual patient desires it) of transparency, individualization, recognition, respect, dignity, and choice in all matters, without exception, related to one's person, circumstances, and relationships in health care” (Berwick, 2009). The Institute for Patient- and Family-Centered Care outlines four concepts that underlie patient-centered care: respect and dignity, information sharing, participation, and collaboration (Institute for Patient- and Family-Centered Care, 2011). The National Quality Forum's National Priorities Partnership characterizes patient-centered care as health care that “honors each individual patient and family, offering voice, control, choice, skills in self-care, and total transparency, and that can and does adapt readily to individual and family circumstances, and to differing cultures, languages, and social backgrounds” (NPP, 2010). This chapter builds on the definition of patient-centered care outlined in Crossing the Quality Chasm: “providing care that is respectful of and responsive to individual patient preferences, needs, and values and ensuring that patient values guide all clinical decisions” (IOM, 2001, p. 40). The concept encompasses multiple dimensions, including respect for patients' values, preferences, and needs; coordination and integration of care; information, communication, and education; physical comfort; emotional support; and involvement of family and friends. Crossing the Quality Chasm outlines several principles to help the system provide this kind of care: care should be based on continuous healing relationships, care should be customized according to patient needs and values, the patient should be the source of control, knowledge should be shared and information should flow freely, information should be provided to patients transparently, and the patient's needs should be anticipated (IOM, 2001). In short, the patient should be considered in all aspects of care and care delivery. A growing body of evidence highlights the potential benefits of patient-centered care for clinical outcomes, health, satisfaction among health care workers, and providers' financial performance. For example, several hospitals that encourage patient-centered care by paying greater attention to patient needs and preferences, as well as care coordination, have found that adverse events decrease, employee retention increases, operating costs decrease, malpractice claims decline, lengths of stay are shorter, and the hospital's costs per case decrease (Charmel and Frampton, 2008; Epstein et al., 2010). Patient and family involvement in decision making has been associated in primary care settings with reduced pain and discomfort, faster recovery in physical health, and improvements in emotional health (Stewart et al., 2000). Similarly, heart attack patients who did not receive patient-centered care were found to have worse long-term outcomes, such as overall health and likelihood of experiencing chest pains, than patients who received such care (Fremont et al., 2001). A study of patient-centered nursing interventions for cancer patients found that the interventions were correlated with improved patient self-representation, optimism, and sense of well-being (Radwin et al., 2009). Patient-centered care also has been found to correlate with a patient's ability to undertake personal health maintenance and adhere to complex treatment regimens. An observational study of Commonwealth of Massachusetts employees found that physicians' knowledge of their patients and patients' trust in their physicians strongly influenced whether patients completed the recommended treatment regimen (Safran et al., 1998). Similarly, HIV patients who reported that their clinician knew them “as a person” had higher odds of receiving and completing highly active antiretroviral therapy, as well as better health outcomes, relative to other HIV patients (Beach et al., 2006). These studies underscore the potential role of patient-centered care in improving the health outcomes from a therapy or intervention that relies on patient self-management, including many therapies for chronic diseases. In addition, patient-oriented care has been associated with decreased utilization of resources. Studies have found that patient-centered communication in primary care visits correlates with fewer diagnostic tests and referrals (Epstein et al., 2005; Stewart et al., 2000). A similar study found that patients who received less patient-centered care incurred 51 percent higher annual charges relative to patients who received more patient-centered care (Bertakis and Azari, 2011). Further, well-informed patients often choose less aggressive and costly therapies; one study found that informed patients were up to 20 percent less likely than other patients to choose elective surgery (O'Connor et al., 2009; Stacey et al., 2011). Yet not all care delivered in the name of patient-centeredness reduces costs or improves outcomes. For example, one study found that patient-centeredness was associated with better outcomes but also higher costs (Bechel et al., 2000). Other studies have yielded mixed results with respect to cost, quality, and value for care models that aim to implement different aspects of patient-centeredness, such as disease management and care coordination programs (Nelson, 2012; Peikes et al., 2009). This inconsistency of results stems in part from the difficulty of identifying what truly constitutes patient-centered care (Epstein and Street, 2011; Hudon et al., 2011). Confusion about the implications of patient-centered care can stymie the efforts of well-meaning individuals and organizations, producing changes that are superficial, fail to address underlying challenges, and add little value to the experience. In the name of patient-centeredness, for example, some health care organizations have adopted luxury, hotel-like amenities; added new technology; or renovated their facilities. Although some of these initiatives may enhance the patient's experience, they do not achieve the true goals of patient-centered care and may increase costs while not improving care quality or outcomes. Patient-centered care must be implemented in a way that directly addresses the patient's needs and preferences and supports those goals most important to improving quality, health, and value. Moreover, establishing a causal link between different aspects of patient engagement and ultimate outcomes can be difficult. For example, several studies have shown a link between patient-centered care and measures of patient experience, which in turn have been linked to better health outcomes (Beach et al., 2006; Browne et al., 2010; Mead and Bower, 2002; Stewart, 1995). Yet researchers are only beginning to understand the chain of causality through which patient-centered care techniques, such as communication, contribute to better health outcomes (Epstein and Street, 2011; Street et al., 2009). Additional research is needed to understand how different patient-centered techniques produce direct and indirect outcomes—from physical and emotional health, to the ability to manage one's care, to improved decision-making ability.
Patients and the public across many diverse demographic groups have shown a desire to become more involved in their care and more informed about their health (Frosch et al., 2012; President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1982). For example, 80 percent of Internet users now seek health information online, making this the third most popular Internet activity (Fox, 2011). After a doctor's appointment, individuals seek out information on diagnoses, tests, and prescriptions to learn more (Diaz et al., 2002). While this online information is variable in quality and should be viewed with caution, this growing interest in health represents an opportunity to increase patients' involvement in their own care, in the care of their loved ones, and in the improvement of the overall system. It further highlights new roles for health professionals in partnering with patients to share reliable online sources of health information (Alston and Paget, 2012). Moreover, the development of new models of care delivery, such as patient-centered medical homes, health homes, and accountable care organizations (ACOs), offers opportunities to incorporate patient engagement. This section explores patient engagement at multiple levels—from the personal relationship of patients with their health care providers, to patients' experience while being treated in a health care organization, to the interaction of patients with the broader system, to patients' management of their own care. Increased patient engagement in individual interactions with practitioners is needed. Some studies have found that patients and clinicians have differing views on the importance of different health goals and health care risks (Lee et al., 2010a,b). Other studies have found that physicians have inaccurate perceptions of their patients' health beliefs, assuming that their patients' beliefs are more aligned with their own than is actually the case. This misperception improves when patients are able to participate actively in the consultation (Johnson et al., 2010; Street and Haidet, 2011). However, studies have found that physicians tend to interrupt patients within 15 seconds of their beginning to speak at the outset of a visit, while uninterrupted patients tend to conclude their remarks in under a minute (Beckman and Frankel, 1984). These studies highlight the need to prepare health care professionals with communication skills and techniques that optimize opportunities for patient engagement. Metrics have been developed for quantifying a patient's activation, defined as the capability to participate in the care process (Hibbard, 2004; Hibbard et al., 2004). These metrics make it possible both to assess whether interventions improve activation and to customize care based on a patient's activation level. Evidence demonstrates that increasing a patient's activation correlates with improvement in a variety of self-management behaviors (Hibbard et al., 2007; Mosen et al., 2007) and that tailoring interventions to a patient's level of activation can improve the interventions' impact (Hibbard et al., 2009). Evidence also suggests that patient activation and self-management can be enhanced through such strategies as improved communication, motivational interviewing, shared decision making, ready access to personal health information and providers, and increased focus on goals that matter to patients and their families. Patients, their families, and other caregivers can bring useful and often critically important knowledge to bear on care if they are invited to do so. Patients often are unable to discuss all of their concerns in a single visit. Some interventions to remedy this limitation are straightforward; one study found that simply asking patients whether there was “something else” to discuss instead of “anything else” reduced the number of unmet concerns by almost 80 percent (Heritage et al., 2007). Moreover, patients bring a different perspective to the encounter than clinicians and will introduce different information. For example, patients on statin drugs were far more likely than their clinician to initiate the discussion of symptoms potentially related to the prescription (Golomb et al., 2007). A variety of interventions are aimed at improving the state of patient-clinician communication (Maurer et al., 2012). Opportunities to improve patient-centered communication skills exist throughout all levels of health professions education, from degree to continuing education (Levinson et al., 2010). Other tools include patient coaching and question checklists, which are designed to assist patients in communicating with their clinicians. In one study, coaching and the use of checklists were shown to increase the number of questions patients asked and were associated with a modest improvement in patient health outcomes (Kinnersley et al., 2007). The implementation of these tools has yielded some success in improving clinician communication behaviors, as well as patient knowledge and satisfaction, although evidence is mixed on the ultimate impact on patient health outcomes (Coulter and Ellins, 2006). Communication tools need to be customized to patients' circumstances, especially their health literacy. Health literacy refers to an individual's ability to obtain, understand, and apply health information to make appropriate health decisions. Given the complexity of the field, even highly educated people may have difficulty finding and understanding health information and applying it to their own care or that of their loved ones (IOM, 2004). Ensuring that patients have the tools they need to manage health information is critical, as lower levels of health literacy have been associated with increased hospitalizations, greater use of emergency rooms, lower use of preventive services, and limited ability to manage complex treatment regimens (Berkman et al., 2011). Given that effective communication requires effort from two parties, those who produce health care information for patients must consider how that information will be received and used by patients (Eckman et al., 2012). Several useful communication techniques, such as motivational interviewing, can promote certain health behaviors and adherence to treatment regimens by drawing out the patient's motivation for change (Rollnick et al., 2008). There is also a need for research on interventions that can improve a patient's ability to manage health information (Berkman et al., 2011). While informing patients about options is important, true patient-centered care requires a new model of decision making in which responsibility is shared between patient and clinician. Implementing this model will require a shift toward health care in which clinicians and patients work together to manage complex conditions, and make decisions on the basis of not only the best scientific evidence but also the patient's biological characteristics, preferences, values, and life circumstances. Such a decision-making model is increasingly important for the growing number of clinical situations in which there are multiple care options, each with different benefits and potential harms. In these situations, where trade-offs will have to be considered, clinicians will need to discuss the risks and benefits of competing diagnostic and treatment options with patients and their caregivers (Collins et al., 2009). In addition to enhanced communication techniques, tools for promoting shared decision making include decision aids. Decision aids provide balanced information on diagnostic and treatment options, including risks and potential outcomes, and help patients consider what factors are most important to their decision. The goal is to help patients identify the diagnostic technology or treatment that best meets their needs, goals, and circumstances. Studies of such tools have found that they increase patients' knowledge and understanding of benefits and risks and encourage them to participate in decisions (Arterburn et al., 2011; Belkora et al., 2012; O'Connor et al., 2004, 2007a,b; Solberg et al., 2010; Stacey et al., 2011). Several organizations, including the International Patient Decision Aids Standards Collaboration, have developed standards against which to validate the quality of decision aids and ensure that they are accurate, unbiased, and understandable. The concept of patient-centered care entails customizing care according to patient preferences along all dimensions, including the level of involvement in decision making. Some patients will be interested in playing a strong role in care decisions, while others may want to play a less active role. Evidence suggests that the system currently does not allow patients to realize their desired level of participation; in one study, fewer than half of patients reported they had achieved their preferred level of control in decision making (Degner et al., 1997). Several studies confirm that while most patients wish to be asked their opinions and be offered choices in their care, patients differ in how they would like to be involved in final care decisions (Chung et al., 2011; Deber et al., 2007; Fineberg, 2012; Levinson et al., 2005; Solberg et al., 2009). These studies illustrate the complex role of patient autonomy in the provision of patient-centered care and confirm the variability in the preferences of individual patients and patient populations in this aspect of care. They also signal that patient satisfaction requires patient-clinician communication that not only shares the appropriate clinical information for each patient, but also provides the appropriate amount of information and degree of autonomy in acting on the information. These findings suggest as well that it is important for clinicians to be working in an environment where they can function as careful listeners and coaches, as well as experts in their field. The implementation of new communication and decision-making paradigms will need to be customized for different patient populations. For vulnerable populations, including low-income individuals, racial and ethnic minorities, and the elderly, there are multiple obstacles to achieving this type of care. For example, patients whose primary point of contact with the health care system is a hospital emergency department are unlikely to develop long-term partnerships with a clinician for making care decisions (Silow-Carroll et al., 2006). In addition, decision-making initiatives will need to be measured and rewarded routinely to ensure their regular use in clinical practice (Sepucha et al., 2004). Challenges will be faced, then, in applying shared decision-making principles to a diverse patient population. However, patient-centered care, delivered through a team approach, can be effective for patients at a range of socioeconomic levels and at a variety of health care organizations, including safety-net systems. For example, several programs have shown success in introducing patient-centered care in urban settings with populations of low socioeconomic status and in achieving long-term engagement in preventive care and improved control of chronic conditions (Jones et al., 2007; Scott et al., 2011). Patient-centered care goes beyond direct patient-clinician interactions to the clinic, unit, and health care organization level. At this level, patient-centeredness means different things, such as creating patient and family councils, establishing portals that allow patients to access their health information, and developing policies that ensure timely access to care (Balik et al., 2011; Maurer et al., 2012). Given that patients, their families, and other caregivers are the people who actually experience care, their perspectives can contribute substantially to effective and efficient health care organizations. Leveraging their knowledge can improve the experience of care through the application of their insights to the design and delivery of care in health care organizations—from hospital design, to visiting hours, to care delivery (Bergeson and Dean, 2006; Groene, 2011; Johnson et al., 2008; Scholle et al., 2010). Thus involving patients in improvement initiatives ensures that patients' values and perspectives guide system design, in addition to keeping the teams working on these projects focused on patient priorities. There are several successful approaches for improving the patient experience, such as those focused on reducing waiting times (Litvak and Bisognano, 2011; Litvak et al., 2005), which also can improve quality and reduce costs (see Chapter 9 for further discussion of these initiatives). To further center care on patient needs and preferences, health care organizations and systems can act on lessons learned about what patients value by engaging patients, their families, and other caregivers. For example, systems can ensure the inclusion of patient perspectives in an institution's operations by promoting patient and family participation on advisory councils, giving patients and their families direct access to the institution's decision-making structures. Case studies have shown that by working on such councils, patients may participate in institutional quality improvement projects, help redesign service delivery processes, serve on search committees for new executives, and help develop educational programs for hospital staff. They also may aid the hospital in making its procedures more efficient and patient-centered and may participate in rounds, which can lead to new suggestions for improvement (Balik et al., 2011; Conway et al., 2006; Ponte et al., 2003). Other programs have shown the potential benefits—including reduction of medical errors and increased hand hygiene—of including patients in safety initiatives, although various institutional factors may limit this potential (Davis et al., 2007; Longtin et al., 2010; Weingart et al., 2005, 2011). Using a different approach, initiatives at one health care organization, using value stream analysis and production system methods, improved care by incorporating patients in continuous improvement projects and measuring value from the patient perspective (Toussaint, 2009). In one example, leaders at Dana-Farber Cancer Institute invited patients and family members to populate all decision-making structures and processes in the organization. Patients provided input on organizational policies, were placed on continuous improvement teams, and were invited to join search committees and develop educational programming for staff (Ponte et al., 2003). Leaders at the organizational level made the commitment to patient-centered care and communicated that vision to the organization (Shaller and The Commonwealth Fund, 2007) (see Chapter 9 for detail on the leadership and other commitments necessary to achieve a patient-centered learning health care organization). Box 7-1 presents another example of such patient and family involvement.  Medical College of Georgia Health System. In 1993, in response to an internal assessment revealing that care focused more on the needs of clinicians than on those of patients and family members, the Medical College of Georgia (MCG) Health System in Augusta, (more...) Another strategy for engaging patients in organizational change is routine measurement. The use of valid and reliable instruments can document the gaps between what routinely occurs and the ideal, thereby stimulating behavioral change among clinicians and patients. These tools include patient experience surveys, mechanisms for submitting complaints, and other feedback opportunities for patients. Beyond the information received, these tools convey the message that the voices of patients, families, and other caregivers are important (Shaller and The Commonwealth Fund, 2007). Patient portals, dashboards, and other information technology-enabled devices are another avenue for bridging the gap between clinician visits and patients' ongoing information and health monitoring needs. By simplifying communication, e-mail and telephone care allow patients to reach their clinicians easily and receive information when they need it. In one organization, office visits fell by 9 percent after the implementation of electronic health records that facilitated effective patient-clinician communication via telephone (Garrido et al., 2005). Similarly, patient portals allow patients to communicate with their clinicians, access their health information, and monitor their own health, thereby facilitating their active participation in their care (Halamka et al., 2008; Shaller and The Commonwealth Fund, 2007). One example of the use of a patient portal in chronic care management is the Palo Alto Medical Foundation's diabetes management system, which allows patients and their clinicians to monitor key measures for the condition and highlights how the measures relate to overall health goals. Early focus group results indicate that while patients initially used the portal because they knew clinicians reviewed the results, over time they started using the system on their own to understand how different behaviors affected their health (IOM, 2011d). Likewise, Partners HealthCare's Center for Connected Health provides health information technology for patients with cardiac conditions, diabetes, and hypertension that allows them to share information with their clinicians and receive feedback. While some patients stop participating early on, 90 percent of those who remain active through the first 2 months continue to participate (IOM, 2011d). These examples demonstrate the potential of health information technologies, as well as highlight the need for these technologies to be easy for patients to use and access. Routine assessment of patient experience can be used to support patient-centered care across a continuum of health care settings while also providing the opportunity to promote better integration, transitions, and coordination of services. To support financial reforms and payment strategies that reward patient-centered care, it is important to develop methods for accurately measuring such care. One instrument for assessing patient experience, the Consumer Assessment of Healthcare Providers and Systems (CAHPS) suite of surveys, was developed as a nationally standardized tool for eliciting reports from patients on their experiences in interacting with the health care system (Browne et al., 2010; Charmel and Frampton, 2008). The hospital version of the survey, called Hospital CAHPS or HCAHPS, is used by hospitals to assess indicators of patient experience, including interactions with staff, information provided, overall satisfaction with the care experience, and the patient's willingness to recommend the hospital to others (Charmel and Frampton, 2008). HCAHPS results also are being used by the Centers for Medicare & Medicaid Services (CMS) to forge a link between patient experience and reimbursement. As of July 2007, hospitals had to report HCAHPS data to CMS or absorb a 2 percent reduction in reimbursement for inpatient services (Charmel and Frampton, 2008). Moreover, under recent policy initiatives, CMS will expand the use of HCAHPS when it uses the survey data as one measure in calculating value-based purchasing payments to hospitals.2 The same focus on patient experience and patient-centered care can be applied to outpatient and non-hospital-based settings. Despite the importance of assessing patient experience and rewarding institutions that perform well on measures of patient-centeredness, some uncertainty exists as to which aspects of the patient experience are most important to measure and best correlate with improved outcomes. Multiple terms exist for defining this aspect of the patient-centeredness of an institution, including “patient satisfaction,” “patient experience,” “patient perception,” and “patient ratings of quality.” Additionally, multiple factors affect patients' rating of their care experience, ranging from accordance with evidence-based processes, to staff care, to information availability (Gao et al., 2012; Sofaer and Firminger, 2005). Another challenge in measurement is ensuring that patient experience data are collected frequently, thereby enabling the organization to assess its improvement in patient-centeredness. One study of patients' perceptions of hospital care, including inpatient care and discharge planning, suggests that higher patient satisfaction may be associated with lower 30-day readmission rates (Boulding et al., 2011). In terms of correlation with an institution's technical expertise, one study compared a hospital's overall patient satisfaction score with its clinical quality and mortality rates for heart attack patients, finding that higher satisfaction correlated with improved adherence to guidelines and lower mortality rates. Yet, high overall patient satisfaction scores showed no correlation with questions about the patient's room, meals, or wait time for tests and treatment or with the speed of the discharge process (Glickman et al., 2010). Another study of patient-centered medical homes found an association between practices rated by patients as high-quality and improved patient blood pressure control (Gray et al., 2011). Still another study found that measures of patient experience correlated with process measures of clinical quality, although they did not correlate with health outcomes (Sequist et al., 2008). Showing the relationship between patient experience and other aspects of care, another study found that patients' satisfaction with hospitals' nursing staff and with staff care influenced the patients' perceptions on overall quality of care, willingness to recommend, and willingness to return (Otani et al., 2010). On the other hand, one recent study cast doubt on the correlation between high levels of patient-centeredness and improved outcomes, finding that greater patient satisfaction was associated with higher inpatient use, higher health care costs, and increased mortality (Fenton et al., 2012). These examples highlight the range of factors that affect a patient's experience and illustrate the potential knowledge gained from these assessments, but also underscore the need for further study regarding the conclusions that can be drawn from patient satisfaction data. Refocusing the health care system on the people it serves will require renewed attention to the ways in which patients, their families, and other caregivers access health information and manage the patient's health. In some cases, patient self-management is a realistic expectation, while in other cases, family and other caregivers will be the primary managers of care. Regardless, patient engagement and support for self-management require education and interventions that enhance patients' ability to monitor and manage their own health problems (IOM, 2003). To this end, it is necessary to provide information and teach people disease-specific skills so they will understand what behavior changes they must make to improve their health prospects and will have the problem-solving skills to cope with changes in their condition. It is also necessary to recognize and assist with the reality of living with a chronic condition, provide patients with support and follow-up opportunities, and encourage patients to actively manage their disease. The horizon for these approaches is promising. Initiatives such as the Empowered Patient Coalition highlight the potential of online mechanisms to provide information and support for patients, their family and other caregivers, and their clinicians in encouraging self-management. Moreover, reviews of patient education and reminder interventions for chronic disease management have found that such interventions are associated with improved health outcomes (Deakin et al., 2005; Guevara et al., 2003; Weingarten et al., 2002). Ultimately, given the complexity of chronic disease management, engaging patients as active participants in their care is quickly becoming an imperative for the health care system. Technology offers opportunities for clinicians to engage patients by meeting with them where they are. The use of mobile devices both to help clinicians reach out to patients and to enable people to monitor their own health holds promise for promoting patient-centered care. The advent of smartphones has led to the creation of numerous applications that enable people to become engaged more completely in their own health through greater access to health information and tracking tools such as built-in pedometers, diet management aids, and weight and blood pressure logs. A recent review of the use of mobile phones for chronic disease management found 23 articles describing interventions involving use of a mobile phone for disease prevention, diagnosis, management, and monitoring, as well as patient education. The interventions spanned a broad range of chronic illnesses, including diabetes, asthma, dementia, and hypertension. Across all interventions, high rates of user compliance and satisfaction were reported (Skinner and Finkelstein, 2008). Early trials reveal the potential of this approach. In a trial of txt2stop, a text messaging service that sends motivational and behavioral change support messages to smokers attempting to quit, smokers who received the text messages showed significantly better cessation rates at 6 months relative to the control group (Free et al., 2011). Another study focused on IDEALL (Improving Diabetes Efforts Across Language and Literacy), an automated telephone support service for diabetics that offers targeted health education messages based on people's responses to questions about exercise, blood glucose monitoring, and other indicators. The study found that, while the service did not lead to differences in blood glucose level for participants, it did lead to increased patient participation, engagement, and self-efficacy compared with patients undergoing typical care (Schillinger et al., 2009). These trials suggest that mobile technologies represent a new avenue for engaging, educating, and activating people in their own care and that of their loved ones. Self-care has become increasingly crucial as patients today are discharged from health care organizations more quickly and in poorer health. As a result, postdischarge care now requires more advanced management by patients, their families, other caregivers, and the community. What used to be the purview of the health care professional now has been delegated to the patient, too often with inadequate handoff. Meeting this challenge will require new methods of education and communication; new technologies for management; and additional community supports, explored in the next section. While patient engagement can help drive the U.S. health care system toward continuous learning and improvement, the value, quality, and care coordination challenges faced by the system cannot be met by any single platform, organization, or entity acting alone. Rather, communities and coalitions are needed to drive improvement. The typical definition of a community is a group located in a particular geographic area. However, communities that promote continuous learning and improvement in health care go beyond geographic boundaries to include groups linked through culture, occupation, conditions based on a common workplace, prognosis, stage in the care process, intensity of care needed, and more. One natural community comprises people who share a particular condition or disease. The disease-specific organizations that represent these patients are a form of top-down community structure. They play a crucial role in gathering, reaching, and motivating patient constituents; funding research; advocating on behalf of patients; and conducting campaigns focused on quality improvement and patient-centered care (Conway et al., 2006). Their efforts aid patients in becoming more educated and informed consumers, and aid clinicians in staying abreast of clinical advances by disseminating clinical guidelines and decision support tools. Disease-specific affinity groups may also form organically as communities with which patients can share their experiences. Box 7-2 presents an example of how a community of patients formed around a common health care need—in this case, the need for prenatal care—can lead to improved health outcomes. A Community of Patient Peers Helps Reduce Premature Births. For many patients, a community of similar patients can offer useful supports for health management. One such patient, Ruth Lopez, was referred by her physician to a CenteringPregnancy program (more...) The Internet has proven key in facilitating the development and rapid growth of these communities. Examples include the New Health Partnerships, C3N, and PatientsLikeMe. Websites, blogs, and social networking platforms such as Facebook and Twitter also give patients the tools to interact with others who share their diagnosis, gain access to new expertise and information, query members of their network, share updates about their health status, and receive support from friends and family. For example, a group of diabetic patients at the Fargo Family Health Center decided to create a blog and listserv where they could share their diabetes treatment experiences at the center, as well as support each other in managing and living with diabetes (IOM, 2011d). In another example, a frustrated mother whose son was getting sicker and sicker despite visits to the pediatrician posted pictures of her son on Facebook, and members of her extended social network were able to relate experiences that led to a correct diagnosis of Kawasaki disease—a rare autoimmune disorder (Kogan, 2011). These examples illustrate how patients and families can utilize existing communities or create new ones to seek out information, manage their care, and gain support from others. Another natural focal point for patient engagement is the workplace. Workplaces have several attributes that make them conducive to community-oriented health and wellness programs: they host a group of employees who share a common goal; they have social, organizational, policy, and financial supports for employee behavior change; they have open and straightforward communication channels; and they have the ability to incentivize and monitor employee participation in sponsored health programs. Over the past 40 years, increasing numbers of employers have taken advantage of these characteristics to create worksite health promotion programs designed to improve employee performance and productivity and mitigate rising health care costs associated with preventable, lifestyle, and behavior-based chronic diseases. According to some studies, well-designed workplace health programs have the potential to produce strong returns on investment, although there are outstanding questions on the returns generated and the generalizability of the results (Chapman, 2005; Goetzel et al., 1999; IOM, 2010). According to a 2008 study, however, only 6.9 percent of health promotion programs offered by employers are evidence-based and include five essential elements: health education, employee screenings, supportive physical and social environments, integration of health promotion into the organizational culture, and links to employee services (Linnan et al., 2008). Recent policy support for evidence-based workplace health programs includes technical assistance and assessment, federal grants to small businesses, and policy changes that allow employers to offer financial incentives to encourage employee participation in wellness programs (Kaiser Family Foundation, 2011). Such workplace communities do face challenges. One of these challenges lies in the tension between the goals of employers and employees, some of which will differ. Another is the need to build trust, as well as to operate transparently (Berry et al., 2010; Goetzel et al., 2007). Recognition of the potential of communities to achieve better outcomes at lower cost has led to a number of initiatives aimed at bringing coalitions together to improve health care. One example is the Aligning Forces for Quality project, which has brought together coalitions of clinicians, patients, employers, insurers, and others in 16 communities to focus on improving health care quality, reducing disparities, and developing new models with the potential to be diffused nationally (Aligning Forces for Quality, 2012; Hurley et al., 2009). Opportunities exist for bridging the gaps between patients, their care, and the broader community. One example is care transitions—changes in the set of clinicians delivering care or in the setting of care that patients must navigate. In the current health care system, both the incentives that encourage health care spending and the increasing specialization of clinicians have led to a situation in which a growing number of patients are seeing an array of clinicians in a variety of care settings. This increase in the number of clinicians and settings involved in a patient's care has led to a corresponding increase in hospitalizations, adverse events, errors, and breakdowns in communication across the care team, and has left patients in the precarious position of coordinating their own care without the knowledge or resources to do so. Further, the rising prevalence of chronic conditions in the United States, with 27 percent of Americans having multiple such conditions, necessitates coordinated care interventions, because chronically ill people experience frequent changes in their health status that require transitions between multiple care providers. Such transitions require successful interactions among the multiple clinicians, organizations, and community-based resources involved in the patient's care and support (HHS, 2010; Naylor et al., 2011). New innovations in care delivery, such as the patient-centered medical home, are aimed at coordinating a patient's care across specialists, hospitals, home health agencies, nursing homes, the patient's family and other caregivers, and community-based services (AAFP et al., 2007; Fields et al., 2010). Multiple initiatives have been developed to increase opportunities to engage patients and their families in care processes, practice improvement, and the design of medical homes (Scholle et al., 2010). Another example is the Patient Protection and Affordable Care Act's creation of ACOs—collaboratives of health care professionals and institutions that provide coordinated health care services to a defined panel of Medicare patients in exchange for a share of the resultant cost savings (Merlis, 2010). Because they will share primary care, hospital, and other organizational resources, ACOs have the potential to develop into integrated, de facto communities of clinicians and patients. Although it remains to be seen whether ACOs will deliver on their promise of better-coordinated care at lower cost, their formation represents a key opportunity for community engagement. Involving patients in the design, formation, and evaluation of ACOs would help ensure that these organizations will adhere to the principles of patient-centered care (Springgate and Brook, 2011). Achieving the elements of effective care transitions represents a crucial challenge—and opportunity—that can be met only in an environment of collaborative patient-centeredness where patients, families, clinicians, and health and social institutions work together to accomplish quality care transitions. Still, successful models demonstrate that effective care transitions are indeed possible. For example, the Care Transitions Model has been shown to reduce hospital admissions by 17 percent and costs by 50 percent (Naylor et al., 1999). A review of 21 randomized controlled trials focused on improving care transitions for chronically ill adults found that, despite substantial heterogeneity among the populations and care transition interventions studied, all but one of the trials yielded positive findings with respect to health outcomes, quality of life, patient satisfaction, resource use, and costs. Nine of the trials showed reductions in readmissions, and eight of those showed reductions in all-cause readmissions in the 30 days after discharge (Naylor et al., 2011). These findings suggest that effective care transition models hold great potential for bridging gaps between care settings and community-based organizations. Several more recent initiatives have been undertaken to improve care coordination and transitions. One is the Department of Health and Human Services' strategic framework for multiple chronic conditions, initiated in 2010, which is designed to facilitate home- and community-based services (HHS, 2010). Similarly, Massachusetts has established a strategic plan for improving care transitions in the state. In developing this plan, it was found that seven principles of effective care transitions were necessary: transfer of clinical information, a communication infrastructure that supports care transitions, patient and family engagement, clinical responsibility for the patient and accountability on the part of clinicians with no lapses in care, clinician and practice engagement, assessment of transitions using standardized process and outcome measures, and payment incentives that promote effective transitions and minimize adverse events (Bonner et al., 2010). Many other initiatives are under way nationally to improve the coordination of patients' care. Although initiatives on care coordination are important for improving patient health, however, achieving cost savings from these programs can be difficult in many cases (Nelson, 2012; Peikes et al., 2009). Although historical commonalities exist between the health care system and public health, the two have evolved into distinct sectors, with the health care system focusing on care of individual patients and the public health sector concentrating on populations, prevention, and social determinants of health. Both perspectives are needed to improve the health of Americans and to confront the problems of increased prevalence of chronic diseases, which is often due to biological and social factors, and rising health care costs (IOM, 2011b,c, 2012a). Moreover, synergies can be realized in improving the quality and value of care by applying a population perspective to traditional medical practice, using clinical practice to identify and address community health problems, strengthening health promotion and health protection by mobilizing community campaigns, and improving health care by coordinating services for individuals (Lasker and Committee on Medicine and Public Health, 1997). Indeed, these sectors have important potential overlap in health surveillance, health promotion, and prevention (Rowan et al., 2007). Several initiatives have been aimed at increasing coordination on this front in the United States and in an international context. Most reported outcomes from these initiatives have been positive, including improved population health, health care delivery processes, and partnership and team functioning. However, evidence on how best to accomplish this integration, as well as how to sustain such initiatives, is limited (Martin-Misener et al., 2009). An Institute of Medicine (IOM) committee recently explored in depth the opportunities for integrating the primary care and public health sectors (IOM, 2012b). Important examples exist of leveraging resources beyond the traditional health care system to promote the provision of services to people whose health and social needs are intertwined (Craig et al., 2011). New initiatives have linked community health centers and community development financial institutions to support community improvements, such as addressing food deserts,3 reducing childhood exposure to allergens and irritants, and increasing the supply of affordable housing and community supports to allow older adults to age in the community (Braunstein and Lavizzo-Mourey, 2011; Erickson and Andrews, 2011; Kotelchuck et al., 2011). These initiatives reflect a recognition of the many determinants of health that can be harnessed to promote patients' health and well-being (IOM, 1997, 2011a; Madden et al., 2007; McGinnis and Foege, 1993; McGinnis et al., 2002). Most determinants of the health status of individuals and populations lie not in health care—medical care accounts for only 10 to 20 percent of overall health prospects—but in such factors as behavior, social circumstances, and environment. Thus, protecting and improving health requires close clinical-community coordination (McGinnis et al., 2002). Such initiatives also reflect a recognition that health is not merely a biological descriptor; rather, it represents patients' and populations' ability to detect and respond to their illnesses; improve their current and future functional capacity; and achieve physical, emotional, and social well-being (IOM, 1997). Further, these initiatives address the increasing burden of chronic disease on the health care and public health systems, on health care expenditures, and on the U.S. population as a whole (Lasker and Committee on Medicine and Public Health, 1997). Other new initiatives encourage coordination among health care services and community resources. Successful care coordination initiatives identify community needs and assets and system-level stakeholders and institutions that define parameters for community action (Craig et al., 2011; McKnight, 1978). They utilize patient stratification techniques to target patients whose needs are not being met by the primary care system—patients who visit emergency rooms more frequently than others, whose illnesses require inpatient care, and whose health care costs are among the highest in the community. Using these criteria, such initiatives develop panels of patients for whom they assume responsibility and harness resources—family religious groups, and others—as partners in those patients' care. These initiatives also have skilled leaders who can coordinate the interests of stakeholders, including hospital administrators and state and local health, housing, and mental health departments, at the system level (Craig et al., 2011). Box 7-3 describes an example of a community initiative aimed at improving care delivery and health outcomes through better care coordination. Vermont Blueprint for Health. Communities of integrated health services, spanning organizations and clinicians, are an example of the evolving definition of communities—in this case focused on care coordination. Community-based teams support patient-centered (more...) Successful care coordination models also utilize care coordinators to work with identified patients in formulating care plans that advance the patients' life and health goals and to coordinate services, including social services and health provider services, to meet those goals. Care coordinators may be nurses, social workers, other health workers, or lay people as long as they have the skills to communicate with and motivate their patients, coordinate a broad range of services, and do all that is necessary to prevent negative outcomes (Bradway et al., 2011). New types of health care professionals also have been introduced to coordinate care in many health care settings; an example is the increasing use of hospitalists to coordinate care in inpatient visits (Meltzer and Chung, 2010; Meltzer et al., 2002).
As discussed in this chapter, neither patients nor clinicians can perform their tasks alone. While clinicians supply their scientific expertise on the benefits and risks of different options, patients contribute their knowledge about the suitability of different options for their needs, goals, and circumstances. Both are necessary to providing the right care. Given that patient-centered care is not simply agreeing to every patient request, many tools are needed to communicate information, create partnerships, and improve decision-making models (Maurer et al., 2012). Further, involving patients meaningfully at the organizational and system levels requires changes in organizational structures and measurement tools and an expanded focus on the patient in all aspects of care. Recommendation 4 highlights the broad aims that different stakeholder groups need to pursue if health care's focus on patients is to increase.
Beyond patient-centered care, this chapter has described how integrating services among and across health care organizations and community-based organizations can improve health and address complex care needs. Further, partnerships between health care organizations and public health systems can advance community health goals. Recommendation 5 describes the broad actions that different stakeholders need to take to improve coordination and partnerships between and among the health care system, community resources, and public health bodies. Further, the recommendation introduces two specific actions that can be taken to produce change immediately by rewarding care that improves population health and by increasing the accuracy of metrics that measure population health.
For many patients, care can be fragmented and uncoordinated, whether they are transitioning from the hospital to a community setting or between two different clinicians. As patient needs have grown more complex, focusing on coordination and communication across all of a patient's health care providers has become increasingly crucial. These coordination and communication needs may be more acute when patients require services beyond the traditional health care system, such as social and community services, for managing their condition. Recommendation 6 outlines actions that need to be taken to improve care transitions and coordination to provide seamless care for patients.
Given the advantages that accrue from involving patients and communities in health care, their inclusion is a goal for a learning health care system. Challenges are entailed in promoting this involvement, from changing the existing culture of medicine to creating metrics that accurately measure involvement. As noted in this chapter, there are differences between patient involvement in care and measures such as patient satisfaction. However, these challenges do not prevent a focus on patients in care, and each can be overcome to allow for a health care system that continually improves patient care. |
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