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, ; Fischbach et al.
Paper records make tracking and understanding longitudinal data and their relationship to various interventions quite difficult Weed, 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, ; Larkin, 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 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. 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.
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, 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, 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:.
One exception to the above findings is a recent randomized control trial of cancer patients. In that study, no differences in outcomes i. 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. 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. 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. Mary Chao is a nurse practitioner who works with patients newly diagnosed with diabetes.
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, 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, ; Muir Gray, ; Risdale, ; Sackett et al.
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.
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. 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. 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, 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 s 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.
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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 the ICU reported an unprecedented survival rate for the disease of 45 percent Suchyta et al. More recently, other investigators have reported using such clinical algorithms to achieve survival rates as high as 75 percent East et al. 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. 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, ; Pauly, 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.
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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, 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. 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, Indeed, some evidence shows that open disclosure of errors may decrease the likelihood of malpractice loss Kraman and Hamm, ; Pietro et al. 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.
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. Rule 8: Anticipation of Needs. 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.
Such programs of care for frail elderly persons in the community have brought together resources likely to be needed by many elderly patients. 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, ; Langley et al. 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, ; Cohn et al.
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. 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. 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, This topic is discussed in more detail in Chapter 5.
Turn recording back on. National Center for Biotechnology Information , U. Search term. 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. 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.
Rule 2: Customization Based on Patient Needs and Values In the current health system, autonomy of clinical decision making is a fundamental value. 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.
Rule 4: Shared Knowledge and the Free Flow of Information Transfer of information—both scientific and personal—is a key form of care. 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, 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. 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.
In Australia, Liaw et al. 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.
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. Rule 6: Safety as a System Property Patients are injured frequently because of poor system designs. Rule 7: Need for Transparency The health care system should be uncompromising in its defense of patient confidentiality, a matter of great national concern. Rule 8: Anticipation of Needs Under the current approach, health care resources are marshaled when they are needed.
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. Rule Cooperation Among Clinicians In the current system, care is taken to protect professional prerogatives and separate roles. Medical Care 38 3 —41, Banet, Gerald A. Journal of Vascular Nursing 15 1 —33, Barry, Michael J. Fowler, Jr. Mulley, Jr. Medical Care 33 8 —82, Barry-Walker, Jean.
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Teng, Anthony J. Radford, and Ian Maddocks. Australian Family Physician 27 suppl 1 :S39—43, Lohr, Kathleen N. Journal on Quality Improvement 25 9 —9, Lorig, Kate R. The challenge for the coming years will be to unlock the potential for health promotion inherent in many sectors of society, among local communities, and within families. There is a clear need to break through traditional boundaries within government sectors, between governmental and nongovernmental organizations, and between the public and private sectors.
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Cooperation is essential; this requires the creation of new partnerships for health, on an equal footing, between the different sectors at all levels of governance in societies. Decision-makers must be firmly committed to social responsibility. Both the public and private sectors should promote health by pursuing policies and practices that:. In many countries, current investment in health is inadequate and often ineffective. Increasing investment for health development requires a truly multisectoral approach including, for example, additional resources for education and housing as well as for the health sector.
Greater investment for health and reorientation of existing investments, both within and among countries, has the potential to achieve significant advances in human development, health and quality of life. Investments for health should reflect the needs of particular groups such as women, children, older people, and indigenous, poor and marginalized populations. Health promotion requires partnerships for health and social development between the different sectors at all levels of governance and society.
Existing partnerships need to be strengthened and the potential for new partnerships must be explored. Partnerships offer mutual benefit for health through the sharing of expertise, skills and resources. Each partnership must be transparent and accountable and be based on agreed ethical principles, mutual understanding and respect. WHO guidelines should be adhered to. Health promotion is carried out by and with people, not on or to people. It improves both the ability of individuals to take action, and the capacity of groups, organizations or communities to influence the determinants of health.
Improving the capacity of communities for health promotion requires practical education, leadership training, and access to resources. Empowering individuals demands more consistent, reliable access to the decision-making process and the skills and knowledge essential to effect change. Both traditional communication and the new information media support this process. Social, cultural and spiritual resources need to be harnessed in innovative ways.
- Crossing the Quality Chasm: A New Health System for the 21st Century.;
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To secure an infrastructure for health promotion, new mechanisms for funding it locally, nationally and globally must be found.