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Institute of Medicine (US) Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington (DC): National Academies Press (US); 2001.

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Crossing the Quality Chasm: A New Health System for the 21st Century.

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3Formulating New Rules to Redesign and Improve Care

Achieving the aims described in Chapter 2 will require profound changes, beginning with a new framework to guide those who undertake those changes. This chapter describes ten new rules to guide the transition to a health system that better meets patients' needs.

Recommendation 4: Private and public purchasers, health care organizations, clinicians, and patients should work together to redesign health care processes in accordance with the following rules:

1.

Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits.

2.

Customization based on patient needs and values. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences.

3.

The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making.

4.

Shared knowledge and the free flow of information. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.

5.

Evidence-based decision making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place.

6.

Safety as a system property. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors.

7.

The need for transparency. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or choosing among alternative treatments. This should include information describing the system's performance on safety, evidence-based practice, and patient satisfaction.

8.

Anticipation of needs. The health system should anticipate patient needs, rather than simply reacting to events.

9.

Continuous decrease in waste. The health system should not waste resources or patient time.

10.

Cooperation among clinicians. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care.

These ten rules translate readily into a set of new patient expectations for health care (see Box 3–1). The committee believes these new expectations are consistent with and reinforce the steps that must be taken to achieve a significant improvement in quality. We also believe they are consistent with the kind of care most clinicians strive to provide each day, but without the support of well-designed care systems and absent an environment that nurtures innovation and excellence.

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BOX 3–1

What Patients Should Expect from Their Health Care. Beyond patient visits: You will have the care you need when you need it… whenever you need it. You will find help in many forms, not just in face-to-face visits. You will find help on the Internet, (more...)

To create a new health care system that more closely matches the purpose and aims described in Chapter 2, it will be necessary, first, to examine old assumptions to understand why they have led to our current ineffective health care systems, and second, to consciously craft new operating assumptions embodied in the rules set forth above. As a guide in formulating its agenda for change, the committee used as a framework recent work in understanding complex adaptive systems (Kauffman, 1995; Stacey, 1996; Waldrop, 1992; Weick, 1995; Zimmerman et al., 1998) and its application to what have become known as “learning organizations” (Senge, 1990) (see Appendix B for an introduction to this field). Following a brief review of this work, we describe in greater detail the ten rules outlined above.

HEALTH CARE ORGANIZATIONS AS COMPLEX ADAPTIVE SYSTEMS

A health care system can be defined as a set of connected or interdependent parts or agents—including caregivers and patients—bound by a common purpose and acting on their knowledge. Health care is complex because of the great number of interconnections within and among small care systems. For example, office practices and critical care units in hospitals are linked to other units (such as laboratories and emergency departments) and are often embedded in even larger “umbrella” organizations such as hospitals, health plans, and integrated delivery systems.

Health care systems are adaptive because unlike mechanical systems, they are composed of individuals—patients and clinicians who have the capacity to learn and change as a result of experience. Their actions in delivering health care are not always predictable, and tend to change both their local and larger environments. The unpredictability of behavior in complex adaptive systems can be seen as contributing to huge variation in the delivery of health care. If such a system is to improve its performance—that is, improve the quality of care it provides— some of these actions need to be specified to the extent possible so they are predictable with a high level of reliability. Other actions are not specifiable because their relationship to outcomes is not well understood (see Figure B-1 in Appendix B).

The task for clinicians and managers, then, is not to treat all situations alike, but to understand when specification and standardization are appropriate and when they are not. The challenge of improving quality lies in understanding that in situations lacking high levels of certainty and clinical agreement, flexibility that results in variation based on patient needs is appropriate. The converse, overspecification, can result in too many handoffs, unnecessary steps, and a lack of the ability to customize.

On the other hand, variation should be minimal in situations in which the levels of certainty and clinical agreement are high and the science base is consistent. In health care today, many processes are underspecified and understandardized. Many irrational variations in practice cannot be justified as better meeting patients' needs, and they represent lost opportunities for benefit.

A surprising finding from research on complex adaptive systems is that relatively simple rules can lead to complex, innovative system behavior. An understanding of complex adaptive behavior has been advanced by studies of biological systems, such as the flocking of birds or schooling of fish to avoid predators. These studies and computer models have confirmed that a few simple rules can guide complex behavior toward a goal. Such systems move toward their goals by having (1) a common purpose (in this case, avoiding predators); (2) internal motivation (surviving another day); and (3) some simple rules that guide individual behavior (keeping up with the group, moving toward the center of mass of the group, and avoiding collisions). Two more familiar examples of simple rules that have given rise to great variety and complexity in social systems are the Ten Commandments and the Bill of Rights, both of which have been interpreted flexibly but remain remarkably robust over time. Good rules describe how the system should function, but do not need to specify this functioning in detail. This insight can help inform the work of redesigning health care as well.

Two particular social systems functioning today illustrate the diverse, creative, and complex actions that can arise from shared aims and general directions (what some writers in the field call a “good enough vision”). The first example is the Internet, which was built to share research data electronically using agreed-upon transfer protocols and conventions. Its explosive growth and adaptation since that time could not have been foreseen, controlled, or designed in detail because the complexity was too great, and individuals who might have wished to do so were unavoidably bound by their old experience. A few simple rules were enough for a functional complex system to emerge on its own.

A second example, the credit card company Visa International, illustrates the power of a few simple rules. As members of a for-profit corporation, banks that issue Visa cards agree to the graphic layout of the card and a common clearing-house that allows any card to be used anywhere worldwide. Its members are otherwise free to compete intensively on all other aspects of business. This design has resulted in huge growth worldwide despite different currencies, customs, and banking systems.

The committee believes these important lessons about simple rules for complex adaptive systems can be applied to health care systems as well. In redesigning health care, the building blocks are the simple processes that make up the work of small systems of care and their interconnections.

Two preconditions are required to build a new health system that can achieve the aims set forth in Chapter 2: common purpose and simple rules. First, those in the system need a common purpose that builds on the good intentions and internal motivations of the people within the health care community. The statement of purpose and aims set forth in Chapter 2 lay out a common purpose for the health system.

Second, a new set of simple rules is needed to guide behavior in the 21st-century health care system. Identifying these rules is a key task in describing a health care system capable of dramatic changes in quality. To this end, the committee proposes a new set of simple rules to guide behavior in the 21st-century health care system. Each rule is contrasted with the current approach and associated assumption it supercedes. The descriptions of the approaches that are used today are not intended to be pejorative, but to capture common practices and contrast these with the committee's vision for the future. The descriptions of today's approaches should be easily recognizable by current clinicians and others in health care. The 21st-century rules we propose, on the other hand, will not be obvious to many of today's clinicians, leaders, or health care consumers. Rather, they represent the precepts the committee believes should guide the behavior and underlie the actions of health care professionals and others as they design new care systems. The committee believes such a change in the ways that patients and their families, clinicians, and others in health care organizations interact with the health care system can produce major improvements in the quality of care. We believe these rules provide broad latitude for innovative thinking that can move the health care system in the direction of being safe, effective, patient-centered, timely, efficient, and equitable.

Several cautions are in order, however. First, as is in the nature of complex adaptive systems, the rules are interrelated and are, therefore, intended to be applied as a set rather than viewed as a menu of choices. Second, to take any one rule to its extreme is likely to lead to a caricature of the intended performance. This is also true of the descriptions of today's approaches, which do not capture many of the good practices currently found in health care. The rules and descriptions are strong, but common sense must apply to their interpretation. Third, the rules provide guidance applicable to most clinical interactions, but they do not cover every possible clinical decision. Fourth, as with the six aims, rules will occasionally conflict with one another. The responsibility of the clinician is to try to resolve or mediate these conflicts most appropriately for a given patient at a particular time. In some cases, however, conflict among rules will remain. Notwithstanding, tension among rules is a property of a complex adaptive system that can represent an area of creativity and growth.

The rules do not need to be highly specific; as in any complex adaptive system, the workforce will translate the rules into wise local actions. But they do have to be powerful and logically related to the aims. Further, they should feel like changes from prevailing approaches.

TEN SIMPLE RULES FOR THE 21ST-CENTURY HEALTH CARE SYSTEM

Table 3–1 summarizes ten simple rules for the 21st-century health care system. In the following subsections, each rule is described and contrasted with the corresponding current approach. There is not in all cases a strong evidence base indicating that following a rule would result in better patient and population outcomes. Where such evidence is available, it is cited; where it is not, this is indicated, and the rationale for the committee's espousal of the rule is provided.

TABLE 3–1. Simple Rules for the 21st-century Health Care System.

TABLE 3–1

Simple Rules for the 21st-century Health Care System.

Rule 1: Care Based on Continuous Healing Relationships

In the 21st-century health care system, care should be organized and paid for so that all types of health care interactions that improve information transfer and strengthen the healing relationship are encouraged. What patients want and need from their care is relief from suffering and uncertainty—knowledge about what is wrong, what is likely to happen, and what can be done to change or manage that outcome. Sometimes, such relief can be provided only in a face-to-face visit. But many needs can and should be met through other forms of care, all centered on a relationship with the clinician. The current system often requires a visit as the only legitimate format for care, and more important, as the only form of professional work that is compensated and measured in the health care world as “productivity.” Under this new rule, care would be available through many new modes of communication, and would be accessible to patients exactly when they need it, any day at any time, not just between 8:00 a.m. and 5:00 p.m. weekdays. The Internet is likely to be a major platform for such communication.

Face-to-face visits will likely continue to be an important form of clinician and patient interaction; for many people, some direct human contact is critical to establish and maintain a strong healing relationship. Face-to-face visits also allow the clinician to physically examine the patient and observe the patient's demeanor. But in many cases, face-to-face visits are not wanted by either clinician or patient, nor are they truly needed. Substituting other forms of care, such as electronic communication, for some face-to-face visits presents an opportunity not only to improve care—make it safer, more effective, patient-centered, and timely—but also to make it more efficient.

Through the judicious use of electronic and other forms of communication, it may also be possible to make more clinician time available to improve the quality of the face-to-face visits that do occur. In today's health care system, necessary face-to-face visits are often delayed or rushed. There may be insufficient time during the visit to understand the psychological underpinnings of symptoms or their relationship to other ongoing health problems. And there may be little time to provide the patient and family with information about a health condition and adequate emotional support for the pain, loneliness, and grief that may accompany the illness (Branch, 2000).

The new rule asserts that the product of health care is not visits or “encounters” but healing relationships that allow patients to obtain the trustworthy information and support they need. A focus on the healing relationship emphasizes that this transfer of trustworthy information is the core product of health care, not something tacked onto a health care visit. In the 21st-century health care system, interaction should be understood in a fundamentally different way. Interaction is not the price of care; it is care (Berwick, 1999). A patient with a question represents an opportunity, not a burden. Time spent in building patients' skills in self-care is not a way of shifting care; it is care. And access to information is not desirable because it allows care to be completed more quickly or supports compliance; it is care.

The new rule calls for continuous access (24 hours a day, 7 days a week, 365 days a year. Three points are critical to understanding how this could be achieved by the 21st-century health care system. First, as suggested above, “access” does not necessarily mean face-to-face contact with a health care professional. Second, such access would not be a matter of extending the current system; rather, it would involve fundamental redesign, attention to human factors, and respect for the limits of human beings. Third, with information technology, continuous access is possible in health care just as it has become increasingly possible in so many other venues of American society through new forms of electronic communication.

A continuous flow of interactions can span evenings, nights, and weekends if information systems make scheduling, access to medical records, e-mail, and the like available directly to patients. Such interactions would also be more individualized, patient-centered, and timely than much of today's care. Much can be learned in this regard from the financial services industry. Just as banking customers have been freed from using teller lines that were open only from 9:00 a.m. to 3:00 p.m. on weekdays, information technology can liberate patient care from the confines of the face-to-face visit. The knowledge and technology now exist to provide many alternatives to visits, including self-care that is strongly supported and unequivocally encouraged (Hart, 1995; Lorig et al., 1993, 1999; Von Korff et al., 1997; Wagner et al., 1996); group visits for patients with like needs, with or without professionals being involved (Beck et al., 1997; Kane and Sands, 1998); use of the Internet for access to scientific information and well-managed discussion groups; and e-mail communication between patients and clinicians (Jadad, 1999; Plsek, 1999; Simon et al., 2000).

We emphasize that this rule cannot be accommodated by the current system working three shifts, nor does it mean that ambulatory settings would never close. Hospitals today rely on back-up double shifts for nursing staff and very long hours for resident physicians, an approach that ignores a large body of work on the effects of fatigue on human performance (Galinsky et al., 1993; Pilcher and Huffcutt, 1996; Samkoff and Jacques, 1991; Sawin and Scerbo, 1995). Through the application of sound design concepts (discussed in Chapter 5), a continuous-access system can be safer and more effective (Espinosa and Nolan, 2000; Womack and Jones, 1996; Womack et al., 1991).

Box 3–2 presents a scenario that illustrates this new rule.

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BOX 3–2

New Rule 1: Care Based on Continuous Healing Relationships. Henry L. is 24 years old and newly identified as HIV positive. He has an apartment in an urban area. Henry e-mails Dr. Sosa at 6:45 a.m.: “I am worried that a rash that just appeared (more...)

Rule 2: Customization Based on Patient Needs and Values

In the current health system, autonomy of clinical decision making is a fundamental value. However, a system that holds to this value fails to make the best use of scientific knowledge. Variations in approaches today often reflect different local and individual styles of practice and training that may or may not be consistent with the current evidence base. The new rule states that variations in treatment should be based primarily on differing patient needs and preferences.

Doctors and other clinicians stand to gain a great deal from this change in perspective. The volume of scientific medical literature today far outpaces the capacity of any clinician—whether medical, nursing, or other health professional—to remain up to date. Weed (2000) has pointed out that to ask an individual practitioner to rely on his or her memory to store and retrieve all the facts relevant to patient care is like asking a travel agent to memorize airline schedules. Information technology can assist by combining probabilities and indicating the likelihood of benefit from myriad possible diagnostic and treatment approaches. The clinician's brain should be used only when less expensive, creative, and resourceful capacities are insufficient.

The new rule implies that patient values drive variability. Patients differ because of variations in personality, nationality, and ethnicity, and in the beliefs and expectations associated with various religions and cultures (Carrese and Rhodes, 1995; Carrillo et al., 1999; Lavizzo-Mourey, 1996; Smith, 1998). Clinicians can recognize such variations by sharing with patients the best available information about alternative ways to treat a given condition, what is known about the likely effects of treatment, and the uncertainty associated with different alternatives when applied to the patient's individual circumstances. For example, patients with prostate disease of a given severity have a choice among prostatectomy, other treatments, and watchful waiting. Some men weigh the possibility of adverse side effects from surgery more heavily than others, and this influences their choice of treatment. Other men weigh the likelihood of recurrence more heavily. Similarly, menopausal women may choose whether to take hormone replacement therapy based in part on how concerned they are about its risks as compared with its benefits. For patients with angina, there may be choices among bypass surgery, angioplasty, or medication. All such choices may be influenced by the extent to which patients are bothered by symptoms, as well as their willingness to risk unfavorable outcomes. Both are highly individual judgments for which patients need good information to make a decision and support after informed choices have been made (Barry et al., 1995; Mort, 1996; Wagner et al., 1995).

Rule 3: The Patient as the Source of Control

In the current system, control over decisions, access, and information is typically in the hands of caregivers and is ceded to patients only when caregivers choose to do so. For example, patients are often required to obtain permission to see their own medical records, to have visitors, or to participate in treatment decisions. A common practice today is that control over the time, type, and location of care and the information needed to make such decisions resides with professionals. The corresponding new rule asserts that, except in unusual circumstances, control should reside with patients.

This rule represents a significant change in how many clinicians would approach patient care, but it is very consistent with the direction in which the clinician-patient relationship has been evolving (Bastian and Richards, 1999; Harrison, 2000) and with widely understood concepts of informed consent (Taylor, 2000). In recent decades, there has been a steady transition from authoritarian models of care to approaches that encourage greater patient access to information and input into decision making, but this transition is far from complete (Emanuel and Emanuel, 1992). The latter approaches correspond to a growing scientific literature in which it is shown that informed patients participating actively in decisions about their own care appear to have better outcomes, lower costs, and higher functional status than those held to more passive roles (Gifford et al., 1998; Lorig et al., 1993, 1999; Superio-Cabuslay et al., 1996; Von Korff et al., 1998). Of 21 studies published between 1983 and 1993 that measured whether the quality of physician-patient communication affected patient health outcomes for conditions such as breast cancer, diabetes, peptic ulcer disease, hypertension, and headaches, 16 reported positive outcomes, 4 reported positive (but not significant) results, and 1 was inconclusive (Stewart, 1995).

A recent review of the literature (Guadagnoli and Ward, 1998) reveals that most patients want to be involved in treatment decisions and to know about available alternatives. In a study of more than 400 elderly veterans offered an invasive medical intervention (Mazur and Hickam, 1997), almost all (93.4 percent) wanted their physician to provide them with information about risks. In examining risk disclosure, Degner and Russell (1988) found in a small study of cancer patients that virtually all preferred a “shared control model.” Similarly, among 300 patients presented with vignettes about decision making, the large majority wanted to be involved and supported in the decision-making process (Deber et al., 1996). Yet, physicians typically underestimate the extent to which patients want information about their care (Strull et al., 1984). Even today, patients rarely receive adequate information for informed decision making (Braddock et al., 1999), despite strong legal underpinnings and professional acknowledgment of its importance.

This new rule is not intended to imply, however, that patients should be forced to share decision making, only that they should be able to exercise the degree of control they wish. Indeed, patients vary in the extent to which they want to be involved in decision making. Arora and McHorney (2000) found that 69 percent of patients with chronic disease (hypertension, diabetes, myocardial infarction, congestive heart failure, and depression) preferred to delegate their medical decisions to their physicians. These and other researchers have found that the likelihood of preferring an active role increases with level of education, but decreases significantly with age (Stiggelbout and Kiebert, 1997). Evidence indicates further that patient preferences may be related to the nature of the decisions to be made, the type of illness, and its severity (Mansell et al., 2000). A 1989 study revealed, for example, that interest in shared decision making declined with increased severity of illness (Ende et al., 1989).

Work by Kaplan and others on patient empowerment (Greenfield et al., 1985, 1988; Kaplan et al., 1989) has demonstrated that it takes time for patients to be included as partners and that in many cases they need to be coached to assume such a role. In settings where this has occurred, however, research has demonstrated the value of the approach. Kaplan et al. (1989) found that patients who had been coached to ask questions during office visits reported fewer functional limitations and had better control of blood sugar and blood pressure than did patients in the control group. Investigators using interactive video to help patients with decision making reported that in a prospective cohort study, patients rated the program very positively in helping them make informed choices about surgical intervention for benign prostatic hypertrophy (Barry et al., 1995; Wagner et al., 1995).

Accomplishing the goal of shared decision making does not necessarily require a high-technology approach. Virginia Mason Medical Center in Seattle, Washington, for example, provides patients with a short form called “Doc Talk” to help them prepare for a visit to their doctor. By reviewing the list of suggested topics before the visit and making notes for themselves, patients are encouraged to ensure that their concerns are addressed (Doc Talk, 1999). A group of Australian investigators used a similar approach with cancer patients and concluded that a question prompt sheet is a simple, inexpensive, and effective means of promoting the asking of questions by cancer patients (Brown et al., 1999).

As noted earlier, patients are increasingly able to use the Internet and other interactive technologies to help them make informed decisions about their medical treatment. Examples of such information include (1) patients' access to their own health records, including laboratory results and diagnostic images; (2) interactive systems for shared decision making (Barry et al., 1995; Wagner et al., 1995) to help patients understand treatment options and the level of medical uncertainty of each, and integrate their own lifestyles and personal beliefs into their decision making; and (3) direct access by patients to information about clinical trials (such as the National Cancer Institute's PDQ database of clinical trials), the clinical research literature, and well-prepared syntheses.

Rule 4: Shared Knowledge and the Free Flow of Information

Transfer of information—both scientific and personal—is a key form of care. In the 21st-century health care system, patients should have access to both types of information without restriction, delay, or the need for anyone else's permission.

Under the current approach, in which the patient visit is the organizing principle, the record is an artifact of that visit. Information is treated as retrospective, archival, passive, and inert. It is used as a record of what has happened or as a tool to defend or prosecute a lawsuit. There is often some barrier to knowledge transfer—whether requiring that the patient call for an appointment or obtain permission—that increases cost without adding value and fails to meet the patient's need.

The new rule represents a change in this view of the nature of health care information. It treats information as interactive, real-time, and prospective, and holds that information is key to the patient-clinician relationship. This rule is related to Rule 1, which states that care should be understood as a healing relationship that rests primarily on the transfer of knowledge through face-to-face visits and various forms of electronic communication. Information is not inert; rather the transfer of knowledge is care. Patients' unrestricted access to their health-related information is a key implication of Rule 4. Ensuring such access can help make information part of a healing relationship. Patients should also be able to see an audit log, that is, a list of all others who have seen their identifiable data.

Several debates have revolved around issues related to patient access to health information. The question of who owns that information remains a difficult and unsettled question (Institute of Medicine, 1994; Waller and Alcantara, 1998). The clinician or organization (such as a hospital) that creates the record has an obligation to protect it from, for example, destruction, tampering, or disclosure. In many states, patients have the right to access or obtain copies of their records, and they sometimes have the right to correct the information. Generally, however, legislation and practice severely limit the conditions (and sometimes impose very high costs for violating those limits) under which these rights are granted. Even where patients have a clear legal right to access their records, the reluctance of some health care organizations and practices may make accessing or obtaining copies of one's records very difficult in reality.

Although patients should have unfettered access to their records and should be able to add comments regarding, for example, their accuracy, the committee believes patients should not be allowed to alter, block access to, or delete information entered in their records by clinicians or others. Medical records are legal as well as patient-care documents. Ensuring that health information is accurate and complete is critical to its use for patient care, research and quality improvement, and legal and financial accountability.

Beyond the generally acknowledged right of a patient to know his or her diagnosis and treatment, patients are sometimes given a summary of their care to help them in their self-care. In the current system, patients who request access to their personal medical information are generally given paper copies of either abbreviated or complete versions of their records (Chambers, 1998; Fischbach et al., 1980; Giglio et al., 1978; Shenkin and Warner, 1973; Weed, 1981). Medical records tend to be large, cumbersome, filled with medical jargon, poorly organized, dispersed among many record holders, incomplete, inaccurate, and/or out of date. Paper records make tracking and understanding longitudinal data and their relationship to various interventions quite difficult (Weed, 1991). Information about the results of care, patient preferences, and patients' own contributions to their health and health care is sparse or nonexistent.

With the advent of Internet-based applications, it is now possible for medical records to be held physically or digitally in a variety of locations, and to be accessed in whole or in part by the patient or anyone to whom he or she grants permission for purposes of reading only or for reading and entering information (Eysenbach, 2000; Larkin, 1999). It is also possible to store patient records on “smart” cards (Schoenfelt, 1998)—wallet-sized cards with embedded chips that can be accessed with a card reader. Other applications include storage of digital images (such as x-rays) on CD-ROM for patients to keep (Mehta et al., 1999).

Relatively little is known about patients' preferences and reactions with regard to having access to their records, but studies have generally shown positive results. Michael and Bordley (1982) found that a majority of patients they surveyed desired access to their medical records. Other studies have revealed that patients appreciate being given all details or a summary of their care (Bronson et al., 1986; Giglio et al., 1978; Gittens, 1986). For example, a pilot study of shared records for people with mental illness revealed enthusiastic acceptance by both patients and health staff (Essex et al., 1990).

Little is known about the extent to which patients understand the information in their medical records. In one study, chronically ill patients who had access to their records reported understanding about half or more of the information they contained (Gittens, 1986). In a study of stroke patients, those having access to their complete medical record reported understanding more about their condition than did control patients who had been given only relevant descriptive medical information (Banet and Felchlia, 1997).

There is some evidence indicating that giving patients greater access to clinical information and their own personal health information improves the process of care and health outcomes:

  • Smokers who had access to their medical records were more likely to state that smoking was a major health concern than were control patients who did not have such access. After 6 months, significantly more patients in the former group had quit smoking (65 percent) compared with those in the latter (29 percent) (Bronson and O'Meara, 1986).
  • College students who were given information from their medical record were more likely than controls to increase their adherence to treatment advice (Giglio et al., 1978).
  • Elderly patients whose medical records were shared with them were more likely to know their medical problems and treatments (although not more likely to adhere to medication regimens) (Bronson et al., 1986).
  • In Australia, Liaw et al. (1998) gave a small set of patients with chronic problems (29 experimental and 22 controls) a computer-generated health record. They found that doing so was practical and well received, and led to positive trends in improved awareness of issues, health promotion, and disease management.
  • Patients with chronic medical conditions who received copies of the progress notes in their medical records reported significant increases in overall physical function and overall health status, greater satisfaction with their care, and more interest in seeing their medical records than patients in a control group who did not receive this information (Maly et al., 1999).
  • In a randomized controlled trial of women attending an antenatal clinic, those given their entire record (experimental group) as opposed to a summary card (control group) were more likely to report feeling “in control” during pregnancy, less likely to report feeling anxious and helpless, and more likely to have information on their records explained to them (Homer et al., 1999).

One exception to the above findings is a recent randomized control trial of 650 cancer patients. In that study, no differences in outcomes (i.e., global health status, emotional functioning, cognitive functioning, or satisfaction) were found between the experimental group, which received a supplementary record designed to improve communication, and the control group (Drury et al., 2000).

Patients' full access to their records could, of course, have unwanted effects unless new ways to help them use and learn from the information are devised. Patients may misunderstand or be frightened by such information, as a clinician's being unsure of a diagnosis and wanting to rule out a serious condition. Clinicians' concerns about patients seeing their records could also result in the preparation of “shadow records” for the clinician's own use or in omission of information from the record, thus compromising care by others who are unaware of the omitted information. It is unclear, moreover, whether patient access to medical records would increase or decrease liability exposure. These and other unintended consequences deserve serious consideration. The committee believes, however, that such circumstances will be the exception rather than the rule (Golodetz et al., 1976) and are not sufficient reason to impede all patients' access to their records. The potential benefits of such access are illustrated in Box 3–3, which describes a practice that uses patients' access to their health information in an interactive context.

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BOX 3–3

Rule 4: Shared Knowledge and the Free Flow of Information. Mary Chao is a nurse practitioner who works with patients newly diagnosed with diabetes. She explains, “People learn by experience—the more ways they experience something, the (more...)

Rule 5: Evidence-Based Decision Making

In today's health system, it is widely believed that the best care for individuals is based on the training and experience of professionals. The new rule, on the other hand, could be stated: The best care results from the conscientious, explicit, and judicious use of current best evidence and knowledge of patient values by well-trained, experienced clinicians.

At their best, health care services match knowledge and need. When care does not match knowledge, it may fail to help—either by omission (failing to do what would help) or by waste (doing what cannot help). The health system today is too tolerant of mismatches between knowledge and action; that is, it is too accepting of both omission and waste. As a result, care is too often unreliable, advice and answers are inconsistent, and clinical practice varies without well-founded rationale. The new rule calls for standardization around best practices as appropriate for a given patient or the subpopulation to which a patient belongs. Such evidence-based decision making can free clinicians to make choices that science cannot guide—decisions based on relationship; observation; and the other senses, including touch.

What the new rule calls for is the use of systematically acquired knowledge in all its forms for decision making. The rule does not require that all decisions be based on the results of randomized controlled trials because such results are not always available and because other forms of knowledge exist, such as that derived from epidemiological and population-based data. Neither does the new rule discount clinician experience or the integration of information about a patient's special circumstances. Rather, it argues that all of these sources of knowledge are relevant and valuable when choosing how to apply evidence. The latter process involves four steps that require training and experience (with organizational and other supports): (1) formulation of a clear clinical question, (2) search for the relevant information from the best possible sources, (3) evaluation of the evidence for its validity and usefulness, and (4) implementation of those findings (Davidoff, 1999).

An emphasis on the use of systematically acquired knowledge derives from a field of study known as evidence-based medicine or, more broadly, evidence-based practice, which evolved during the last decade (Evidence-Based Medicine Working Group, 1992; Muir Gray, 1997; Risdale, 1995; Sackett et al., 2000). The approach often involves systematic examinations of clinical questions that includes a comprehensive review of the literature, standard methods of presenting data, and emphasis on the validity of the research methods. Individual studies are assessed and scored on the basis of their design and execution, including, for example, the selection of patients, the size of the study, and how confounding variables were accounted for (Cook et al., 1997; Lohr and Carey, 1999). Evidence-based practice is described in greater detail in Chapter 6.

The availability of systematic reviews and the resulting clinical guidelines for practicing clinicians (O'Connor et al., 1999) is an essential adjunct to practice. A growing body of evidence demonstrates that the use of clinical practice guidelines with other supportive tools, such as reminder systems, can improve patient care (Cabana et al., 1999; East et al., 1999; Morris, 1993; Thomsen et al., 1994; Wells et al., 2000). Despite the best of intentions, clinicians cannot be expected to process unaided all the details, strengths, and limitations of scientific evidence under normal conditions of practice in which the number of variables to be considered is great, but resources, including time, are severely limited (Weed, 1999).

The commitment to standardizing to excellence—using the best available information—does not begin with a slavish adherence to simplistic practice guidelines. With today's information systems, protocols can incorporate variations based on the individual patient's condition, such as kidney function and the presence of other chronic problems. An example is adult respiratory distress symptom, an extremely serious condition that in the late 1970s resulted in death for nearly 90 percent of intensive care unit (ICU) patients for whom it was diagnosed. A group of investigators at LDS Hospital in Salt Lake City was able to generate computer-generated guidelines for concurrent management of the many complex physiological parameters involved in treating this illness, which had resulted in several thousand separate instructions (Thomsen et al., 1994). The new system of computer-generated protocols adapted continuously to the patient's condition. ICU staff were required to take actions in response to the guidelines, accepting or rejecting the instructions on the basis of their judgment. With use, the instructions become more accurate, and the ICU staff came to trust them more. As a result, in 1991 the ICU reported an unprecedented survival rate for the disease of 45 percent (Suchyta et al., 1991). More recently, other investigators have reported using such clinical algorithms to achieve survival rates as high as 75 percent (East et al., 1999; Lewandowski et al., 1997).

A commitment to evidence-based practice may appear to conflict with Rule 3, according to which patient values should drive variability. A simplistic way of stating the tension between the two is: The patient is always right, but sometimes the doctor knows best. When a patient seeks inappropriate health care services, the challenge for clinicians is to find ways of reducing this conflict and, to the extent possible, resolving it, guided always by efforts to understand and respond to patient needs. If a conflict cannot be resolved through counseling, the clinician should refuse to provide nonbeneficial services. If a patient decides not to accept services that are likely be beneficial, the clinician needs to ensure that the patient understands the implications of his or her choice and support the patient in that choice.

Rule 6: Safety as a System Property

Patients are injured frequently because of poor system designs. For this reason, a means of accountability that relies on blaming individuals stands little or no chance of achieving significant improvements. The health care system must be able to deliver appropriate care, reliably and without error. The assumption underlying the current rule can be stated as: Careful and competent professionals do not, or should not, make errors. If errors occur, the current rule assumes that the problem must be due to a lack of competence or carelessness. It would follow that the best response to error would be to ensure that individuals are trained better, are alerted to the need to attend to safety and follow rules, are motivated to be careful, and are punished if they err.

The assumption underlying the new rule is quite different. This rule might be stated as: Threats to patient safety are the end result of complex causes such as faulty equipment; system design; and the interplay of human factors, including fatigue, limitations on memory, and distraction. The way to improve safety is to learn about causes of error and use this knowledge to design systems of care so as to prevent error when possible, to make visible those errors that do occur (so they can be intercepted), and to mitigate the harm done when an error does reach the patient. Put simply, in the new health care system, procedures, job designs, equipment, communication, and information technology should be configured to respect human factors and to make errors less common and less harmful when they do occur.

Health care is composed of a large set of interacting systems—paramedic, emergency, ambulatory, inpatient, and home health care; testing and imaging laboratories; pharmacies; and so forth—that are connected in loosely coupled but intricate networks of individuals, teams, procedures, regulations, communications, equipment, and devices. These systems function within such diverse and diffuse management, accountability, and information structures that the overall term health system is today a misnomer. Further, despite contractual relationships with insurers, many physicians are so tenuously connected to organizations that they do not view themselves as part of a system of care (Freidson, 1975; Pauly, 1980). In these and many other ways, the distinct cultures of medicine (and other health professions) add to its idiosyncrasy among high-risk industries. Nevertheless, experience in other high-risk industries has provided well-understood methods for improving safety.

Patient safety emerges from safe designs used in systems that incorporate an understanding of human factors. Such an approach can improve performance, prevent harm when error does occur, help systems recover from error, and mitigate further harm. Knowledge about human factors must be applied in designing tasks, processes, equipment, rules, and environments. Safety also requires leadership—by governing boards and corporate executives and by leaders of clinical groups embedded in larger organizations. To create safety systems requires that clinical leaders and managers use and continually contribute to the best knowledge about safe designs for tasks, equipment, processes, rules, and environments.

The biggest challenge to moving toward a safer health system is changing the culture from one of blaming individuals for errors to one in which errors are treated not as personal failures, but as opportunities to improve the system and prevent harm. One of the most important barriers to increasing patient safety is a lack of awareness of the extent to which errors occur daily in all health care settings and organizations. In today's health systems, the vast majority of errors are not reported because personnel fear they will be punished.

The committee's earlier report (Institute of Medicine, 2000) recommends that health care organizations and the professionals affiliated with them make continually improved patient safety a declared and serious aim by establishing patient safety programs with a defined executive responsibility. That report further recommends that patient safety programs: (1) provide strong, clear, and visible attention to safety; (2) implement nonpunitive systems for reporting and analyzing errors within their organizations; (3) incorporate well-understood safety principles, such as standardizing and simplifying equipment, supplies, and processes; and (4) establish interdisciplinary team training programs, such as those involving simulation, that incorporate training designed to improve and maintain skills, as well as improve communication among team members. Chapter 5 of this report examines some design principles that organizations can apply to improve safety.

Rule 7: Need for Transparency

The health care system should be uncompromising in its defense of patient confidentiality, a matter of great national concern. But the pursuit of confidentiality is not a reason for hiding the system's performance from those who depend on the system for care. This new rule calls for health systems to be accountable to the public; to do their work openly; to make their results known to the public and professionals alike; and to build trust through disclosure, even of the systems' own problems.

At times, today's health care system appears to put a premium on secrecy. Although it is critical to safeguard patient confidentiality, poorly designed policies and procedures that limit the sharing of information may be perceived by patients as a series of closed doors, locked cabinets, and private meetings. In the current system, concern about the burden of reporting and oversight, litigation, and blame has generated conflict and mistrust and cast transparency in its most negative light, resulting in resistance to disclosure of all kinds.

In the future health care system, the rule should be: Have no secrets. Make all information flow freely so that anyone involved in the system, including patients and families, can make the most informed choices and know at any time whatever facts may be relevant to a patient's decision making. This new rule is expected to supplement trust in the good training and intentions of health care professionals with trust based on good information and well-designed systems of care.

Although changes in the tort system may be desirable, improving the health care system cannot wait for such change to occur. Some organizations have successfully implemented programs of increased transparency despite the liability risk (Peterkin, 1990). Indeed, some evidence shows that open disclosure of errors may decrease the likelihood of malpractice loss (Kraman and Hamm, 1999; Pietro et al., 2000; Witman et al., 1990; Wu, 1999).

In the future health care system envisioned by the committee, transparency is the route to accountability—the identification of who is responsible both financially and clinically for the actions of health care organizations and individuals. The committee believes trust will improve in a health care system that poses few barriers to the flow of information, including aggregate (non-personally identifiable) research data and information about the quality of care. A health care system that operates under a rule of transparency will be more patient-centered and safer because patients will be able to recognize outdated and wrong information and to share in information that affects their care, such as the results of laboratory tests, medications being taken, and the correct doses.

Rule 8: Anticipation of Needs

Under the current approach, health care resources are marshaled when they are needed. The system works largely in a reactive mode, awaiting complications and underinvesting in prevention. The new system would not wait for trouble. It would use patient registries to track patients and draw them into care. It would use predictive models to anticipate demand and allocate its resources according to those predictions, thereby smoothing workflow. The corresponding 21st-century rule would state: Organize health care to predict and anticipate needs based on knowledge of patients, local conditions, and a thorough knowledge of the natural history of illness. A system that adopted this new rule would be more patient-centered and more effective. It would make and use better predictions about the flow of need and demand, allowing for anticipation of the needs of both individuals and the patient population at risk. Box 3–4 illustrates the new rule and the current approach.

Box Icon

BOX 3–4

Rule 8: Anticipation of Needs. Current Approach: React to Needs Pearl Clayton is 86 years old. She has been widowed for 5 years and lives alone. She has recently shown signs of forgetfulness and has had two recent falls, one of which resulted in a fractured (more...)

Scenarios similar to the current approach described in Box 3–4 are common today. Crises for older persons occur because anticipatory management of multiple problems is rare. When care hinges on scheduled office visits or emergency room visits, anticipatory management that can prevent acute hospitalization is difficult. Under the new rule, anticipation could include more and better linkages among care teams, linkages among health systems and community resources, and more frequent communication with patients through telephone consultations and community services. Notable efforts to adopt this approach in the United States include the innovative On Lok Senior Health Services, first organized in San Francisco's Chinatown, and its replications in the Program of All-Inclusive Care for the Elderly (PACE) (Eng et al., 1997; Rich, 1999). Such programs of care for frail elderly persons in the community have brought together resources likely to be needed by many elderly patients. Other countries, including the United Kingdom and Finland, have also focused on such linkages designed to anticipate patient needs (The Ministry of Social Affairs and Health and The Association of Finnish Local and Regional Authorities, 1999).

Rule 9: Waste Continuously Decreased

The current system tries to conserve resources through restrictions and budget limits, withholding services and creating queues to drive costs down. This is a destructive, short-term approach. A more modern approach would build on a better understanding of the nature of waste itself, identifying expenditures of all types that add no value—unused supplies, rework and redundancy, unhelpful inspection, lost ideas, and unused information—and systematically eliminating that waste. The United States spends over 50 percent more per person on health care than many other Western nations. Yet it does not appear that these vast expenditures are buying reliable levels of quality. The care in some places for some conditions is superb, but such is not the case everywhere, for all people, all the time.

Many of the problems with the current health care system are related to the belief that reducing expenditures alone will increase value. The current rule appears to be: The value of our health care investment is increased by cost reductions, often by rationing services. As a result, systems attempt to continue what they are doing with fewer resources, for example, by stretching staff over larger and larger numbers of tasks and patients. Other efforts to reduce costs have led to arbitrary limits on services such as lengths of stay in a hospital; the kinds of settings that are allowed for care; and the numbers of encounters, such as home health visits.

The committee believes this is not the route to improved value. The new rule states that increased value will not be derived by stressing the current system, that is, by asking people to work harder, faster, and longer, and while doing so, not to make (or admit to) any errors. Rather, increased value will result from systematically developed strategies that focus on the aims of the health care system outlined in Chapter 2—safety, effectiveness, patient-centeredness, timeliness, efficiency, and equity—and reduce all forms of waste by eliminating activities or resources that do not add value (Dresser, 1997; Langley et al., 1996; Saphir, 1999). Waste has been described as comprising seven types: (1) overuse of services (see Appendix A); (2) waiting (for example, for a laboratory test to be performed or for its results); (3) transportation (for example, requiring a patient to go to another site or floor for care); (4) processing (more steps than are needed to accomplish results); (5) stock (using more materials than are needed, maintaining unused materials in inventory or unused workforce skills); (6) motion (wasting both energy and time); and (7) defects in production. The latter type of waste has its counterpart in health care delivery in the form of mistakes in execution or lack of proficiency in performing a procedure such that the patient does not receive full benefit.

Many smart cost reductions are achievable as the side effects of improving the process of care. Health care systems need to build on the experience of other industries and the reports that have begun to appear in the literature from groups able to demonstrate gains in efficiency and quality of care and reduced waste and costs (Barry-Walker, 2000; Cohn et al., 1997; Fuss et al., 1998; Stewart et al., 1997; Tidikis and Strasen, 1994; Tunick et al., 1997).

The committee does not intend to imply that all types of quality improvement efforts will result in reduced waste or cost or that only cost-reducing quality improvement efforts should be undertaken. Underuse of health services as a result of barriers to access (e.g., lack of insurance) or provision of care inconsistent with the evidence base (e.g., failure to prescribe beta blockers when indicated following an acute myocardial infarction) is also a serious quality problem that must be addressed by the 21st-century health system.

Rule 10: Cooperation Among Clinicians

In the current system, care is taken to protect professional prerogatives and separate roles. The current system shows too little cooperation and teamwork. Instead, each discipline and type of organization tends to defend its authority at the expense of the total system's function—a problem known as suboptimization. Patients suffer through lost continuity, redundancy, excess costs, and miscommunication. Patients and families commonly report that caregivers appear not to coordinate their work, or even to know what others are doing. Suboptimization is seen, for example, in operating rooms that must maintain multiple different surgical tray setups for different doctors performing the same procedure. Each doctor gets what he or she wants, but at the cost of introducing enormous complexity and possible error into the system. In the new system, people will understand the advantage of high levels of cooperation, coordination, and standardization to guarantee excellence, continuity, and reliability.

The current approach focuses on role definition, certification and licensure, or doing one's own work as the top priority, rather than helping others do their work. It is the basis of professional self-esteem and status and a criterion of competence. That approach also, however, makes defined roles preeminent rather than meeting patients' needs. It lets the role “trump” the system, and the system suffers as a consequence.

Under the new rule, cooperation in patient care is more important than professional prerogatives and roles. The new rule emphasizes a focus on good communication among members of a team, using all the expertise and knowledge of team members and, where appropriate, sensibly extending roles to meet patients' needs (Bulger, 2000). This topic is discussed in more detail in Chapter 5.

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Copyright 2001 by the National Academy of Sciences. All rights reserved.
Bookshelf ID: NBK222277

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