Health Care Quality

Health Care

Quality

Incorporating Consumer Perspectives Paul D.

Cleary, PhD; Susan Edgman-Levitan, PA

The goal of this article is to address, from the perspective of users of the health care system (consumers), the following questions: What are the most important health care quality gaps and/or challenges; what major changes should we anticipate in this area in the near future; and what should be the role of federal and state agencies, accreditation organizations, and philanthropic foundations in addressing these challenges? We discuss the needs, challenges, and potential action steps for increasing the prominence of the user's perspective in 3 areas: (1) the conceptualization and definition of quality; (2) the measurement of quality; and (3) routine quality assessment and improvement. The article concludes by making recommendations about the role that different agencies and organizations can and should play in meeting these challenges. JAMA. 1997;278:1608-1612

THE GOAL of this article is to address, from the user's (consumer's) perspec¬ tive, the following questions: What are the most important health care quality gaps and/or challenges; what major changes should we anticipate in this area in the near future; and what should be the role offederal and state agencies and philanthropic foundations. We address these issues in 3 areas: (1) the conceptu¬ alization and definition of quality; (2) the measurement of quality; and (3) routine quality assessment and improvement?

CONCEPTUALIZATION AND DEFINITION OF QUALITY What Is Known Recent work on the definition and measurement of health care quality has resulted in the availability of a range of quality indicators that exceed, by a large factor, the number any existing health From the Departments of Health Care Policy (Dr Cleary) and Medicine (Ms Edgman-Levitan), Harvard Medical School, and the Picker Institute (Dr Cleary and Ms Edgman-Levitan), Boston, Mass. Presented in part before Quality Challenge Areas Across Perspectives and the Role of AHCPR; Washington, DC; February 10,1997. Reprints: Paul D. Cleary, PhD, Department of Health Care Policy, 180 Longwood Ave, Boston, MA 02115.

system could implement and use.1"8 Important criteria for making decisions

about what subset of measures to develop and collect are the values and preferences of consumers. Unfortu¬ nately, not enough is known about these issues. Even measures that seem, by their very nature, to incorporate the user's perspective may not adequately do so. For example, in spite of extensive re¬ search on the assessment of patient satisfaction,1,9 much of this work has not explicitly elicited information from users of health care to help define qual¬ ity health care. Recent research that has focused on how consumers define qual¬ ity has yielded several important lessons.10"15 First, amenities (eg, food, parking, cleanliness) that are so promi¬ nent in many satisfaction questionnaires are seen as very distinct from quality of care by most patients. Second, these studies suggest that the very concept of "satisfaction" is not adequate. Satisfac¬ tion implies only that expectations have been met. Patients can be satisfied with care that is not high quality and can be dissatisfied with quality care. Third, cer¬ tain issues, such as being treated with respect and being involved in treatment decisions, aspects of care not included in

many satisfaction surveys, mount issues for patients.

are

para¬

Remaining Challenges Much work on quality assessment is based on implicit assumptions about how people define quality and what informa¬ tion they value. Research is needed on larger samples of persons to understand how people value and use different types of quality information. Such studies should be designed so that they can as¬

sess the extent to which these values dif¬ fer among different subsets ofthe popu¬ lation. Persons with different educational, racial or ethnic backgrounds, financial re¬ sources, and health status may differ sub¬ stantially in the value they attach to in¬ dicators of quality.

MEASUREMENT OF QUALITY What Is Known Recent advances in quality assess¬ ment have been especially impressive for measures that elicit information di¬ rectly from users ofthe health care sys¬ tem. These measures include questions that ask patients what they experienced during a particular clinical episode (pro¬ cess measures)10 or about a patient's health-related quality of life (HRQL) be¬ fore and/or after treatment (outcome

measures).1637

Work on the assessment of patient ex¬ periences of care has resulted in rela¬ tively short measures that are reliable and valid. There is increasing emphasis on developing questions that ask for "re¬ ports" about events that did or did not happen during a clinical encounter, rather than a rating of satisfaction or ex¬ cellence. Such questions tend to reflect better the quality of care and are both more interpretable and actionable for quality improvement purposes.10,13 The

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Consumer Assessment of Health Plans (CAHPS) project, supported by the Agency for Health Care Policy and Re¬ search (AHCPR), has adopted the ap¬ proach of using more report-type ques¬ tions and fewer pure evaluation ques¬ tions. In the area of HRQL, research has resulted in measures of HRQL that are valid and reliable,26 responsive to impor¬ tant clinical changes, 18>27·28·35 and shorter instruments that are easier to under¬ stand and administer.29"34'36·37 There still is disagreement about whether process or outcome measures are better reflections ofthe quality of care de¬ livered.8 In spite of the many compelling arguments for collecting and publicly dis¬ seminating information about HRQL, there are practical and theoretical impedi¬

doing so. First, many patientreported outcomes are not closely linked to the quality of care. Strong empirical ments to

associations between outcome and pro¬ likely when the patient group is well defined by medical condition and/or demographic characteristics, when there is a well-accepted physiologic, biochemical, or psychologic mechanism that links medical intervention with out¬ come, and when the outcomes are tar¬ geted for the medical condition. These conditions rarely are met. In addition, risk adjustment for HRQL outcomes is usu¬ ally very difficult. cess are more

Remaining Challenges Very little research has focused on what information users, as opposed to purchasers or clinicians, would like to have in summary reports, or "report cards," how they interpret the informa¬ tion that is presented, or how such infor¬ mation influences decisions that they make. Perhaps the greatest challenge facing us in the assessment of patient experiences with health care is focusing

assessments on the most relevant unit of

analysis. Survey information about plans is of interest to certain people, pri¬ marily those with choice among plans,

but it may be less useful to others. Hibbard and Jewett38·39 studied how people view different quality indicators, the ma¬ jority of which were included in the ear¬ lier version ofthe Health Plan Employer Data and Information Set (HEDIS), published by the National Committee for Quality Assurance (NCQA). Many of the consumers in these studies did not think "plans" had any influence on the measure of quality presented (eg, hospi¬ tal-based measures). Furthermore, many people do not have a choice of plans and are only choosing a clinic or physician.40 People usually are more interested in in¬ formation about specific physicians, groups of physicians, or specific hospi¬ tals than health plans.

There also is evidence that people still rely primarily on informal advice from friends and relatives for selecting plans and clinicians.15,41 This is probably be¬ cause the information they get from such people is very detailed, it can be elicited at the appropriate level of specificity,

and the source ofthe information can be evaluated carefully. It is very likely that when people select specific clinicians, they would like to know about their tech¬ nical skills, values, and interpersonal style. The practical and logistic issues in collecting and disseminating informa¬ tion about individual clinicians is daunt¬ ing, however. Another challenge is defining the time frame for quality measures. Research15 has shown that people, especially those with complicated conditions, do not de¬ scribe their experiences in terms of single visits with one clinician, but rather in terms of episodes of care. Heart at¬ tack patients, for example, in describing the care they received, might refer to care received in the emergency depart¬ ment, the medical service of 1 hospital, the surgical service of another hospital, the office of a cardiologist, the office of their general physician, and a rehabili¬ tation setting, all in a single story about the quality of care received. Some ofthe problems addressing these issues are technical, as well as concep¬ tual. Even the most technically sophisti¬ cated hospitals and health plans have dif¬ ficulty selecting probability samples of patients meeting clearly defined clinical criteria and almost no systems are ca¬ pable of tracking patients across an en¬ tire episode of illness. Thus, a challenge facing most health organizations is how to develop information systems that can sup¬ port such quality assessment activities. The health-sickness dimension is simi¬ larly complex. One of the most common findings from consumer research is that people want information from people "like them."15 Healthy people probably will be interested most in descriptive informa¬ tion about benefits, location of physi¬ cian, hours of operation, and access. People with a specific chronic condition, on the other hand, undoubtedly will be more interested in how well a plan and/ or specific group of clinicians provided care to persons with similar conditions and how to locate clinicians with values similar to theirs on issues such as in¬ volvement in decision making, aggres¬ siveness of treatment, use of nontraditional therapies, and even spiritual values. We need to learn more about the ex¬ tent to which interplan variations in out¬ comes reflect interplan variations in quality and whether they should be used in publicly reported quality measures. There is another way in which measures

of HRQL could be extremely useful to patients that frequently is overlooked by

researchers. Patients would like to know which clinician or health plan is likely to provide the most effective treatment. However, this level of precision may be totally unrealistic when patients cannot even get good, standardized data on the average trajectory of HRQL for most conditions. It is almost impossible for most patients with a given chronic con¬ dition to get systematic, standardized data about what will be the typical change in different aspects of HRQL,23 such as physical functioning or specific symptoms, over the course of months or years. From a patient's point of view, this may be the most important informa¬ tion he or she can get,21 yet most quality researchers focus instead on differences among clinicians or clinical facilities, such as hospitals, at a single point in time. The development and implementation of computer-based patient records and the availability of databases using standard¬ ized definitions and data collection pro¬ cedures would greatly facilitate the practice of evidence-based medicine and would also provide patients with the kinds of information they are most in¬ terested in. ROUTINE QUALITY ASSESSMENT AND IMPROVEMENT What Is Known There are several ways of using con¬ sumer information to improve the qual¬ ity of medical care. These include (1) pro¬ viding feedback to consumers to facili¬ tate choice; (2) providing feedback to plans and clinicians for internal quality improvement; (3) providing feedback to purchasers to influence choice; (4) using information from consumers to set stan¬ dards for services and marketing; and (5) establishing rules and regulations based on consumers' values. The CAHPS research teams are fo¬ cusing on the first strategy. They will be evaluating how useful information col¬ lected from members ofhealth care plans is to other persons making decisions among health care plans. Research15'88,39 suggests that information from con¬ sumer surveys may be more relevant for choosing individual clinicians than plans. This may be due partly to the lack of independent, standardized data that ad¬ dress dimensions of quality most impor¬ tant to consumers. CAHPS will evaluate rigorously the utility of such informa¬ tion to consumers. We know surprisingly little about how quality information does or could influ¬ ence decision making. In the area of health behavior, there is widespread agreement about the complexity of de-


cisión making.4245 The choice of a physi¬ cian may be less complex than decisions about personal health behaviors, but there still is a need to assess these deci¬ sions using the sophisticated theoretical and analytic tools commonly used by re¬ searchers to understand other kinds of decision making. All these issues are particularly sa¬ lient for persons with less education and/ or persons in minority communities. Many have noted that information needs vary dramatically among different popu¬ lation groups and that the way people receive and respond to information is a complex process that is influenced by a wide array of social factors. It is well known that effective dissemination and use of information may depend on ac¬ cepted channels of communication and opinion leaders. No program for the dis¬ semination of health care quality infor¬ mation that we are aware of takes ad¬ vantage of local community structures. We think there should be more research on the development and use of commu¬ nity-based models for both assessing the adequacy ofthe health care systems and for disseminating information about physicians, clinics, and hospitals to com¬ munity residents. Most consumer reports use data from standardized questions. However, many, if not most, individuals would prefer to talk to a person like them who is in simi¬ lar circumstances. This is not possible for all people, but it is possible to facilitate more types of personal communication to supplement the dissemination of stan¬ dardized information. For example, cer¬ tain programs, such as the CHESS pro¬ gram,46,47 allow patients with the same condition (eg, breast cancer, human im¬ munodeficiency virus infection) to talk to one another, via computer bulletin boards, about clinicians and coping with their condition. Evaluations indicate that such programs can be successful and may meet patients' needs better than stan¬ dardized reports. Consumers also could have an impor¬ tant role in evaluating other types of in¬ formation about health plans. There now is a growing array of administrative and financial control mechanisms used by

managed

care

organizations, physician

groups, and hospitals to influence the pro¬ vision of care. These strategies include se¬ lective hiring and contracting with physi¬ cians,48 utilization management, financial control mechanisms,49 peer and social in¬

fluences,50"52 case management, providing education and information about practice patterns, and other types of quality assur¬ ance

programs.5359

Many are concerned that the increas¬ ing use of these strategies might compro¬ mise the quality of medical care for some

people. The current mix of professional, legal, and legislative responses to com¬ mon cost-containment strategies in man¬ aged care does not adequately address the concerns raised. While regulations have placed some limits on the forms financial incentive programs may take, many be¬ lieve physicians are still placed in situa¬ tions that create potential conflicts of in¬ terest. Furthermore, it is unlikely that regulations will be able to keep pace with the rapidly changing nature of cost-con¬ tainment strategies. Another disadvan¬ tage of regulatory approaches is that they do not involve patients directly in critical decisions about their health care. Patients currently have little knowledge of these implicit rationing methods that can affect access and the types of care they receive. We think disclosure of cost-containment strategies by health plans, although com¬ plicated and difficult to implement, is fea¬ sible and could effectively balance the interests of patients, physicians, and payers.

Remaining Challenges Empirical work is needed

to under¬ stand the relative effectiveness and costs associated with providing information to payers, clinicians, health plans, and pa¬ tients, as a means to stimulate quality im¬ provement. Because consumers are the source ofthese ratings, it is often assumed that disseminating consumer ratings pub¬ licly is the best way to facilitate the pro¬ vision of high-quality care. This is an as¬ sumption that should be tested. Conversely, it often is assumed that the best way to ensure the appropriate use of administrative and financial control strategies is to place regulatory con¬ straints on the way plans can operate. It could well be, however, that making this type ofinformation publicly available and educating consumers about the health plan's function could be a more effective and efficient strategy for improving the way health plans operate than the tra¬ ditional regulatory approach. Assessments of these approaches should include evaluations of how well people understand the information pre¬ sented. Comprehension of information is a limiting factor in its usefulness. In¬ formation that seems intuitively obvi¬ ous to researchers in this area borders on incomprehensible for many people, even those with a lot of education and interest in health care issues. Another area in need of more research is how to calculate and present a summary assessment. Although such summary rat¬ ings are commonlyprovided for consumer goods, health care researchers have been reluctant to use such evaluations because the conceptual and methodological chal¬ lenges of developing them are so compii-

cated. In health care, patient experiences much more complex than consumer goods, and the range of conditions under which one uses the system is much greater than typically handled by a consumer evaluation sys¬ tem. Furthermore, people need to choose a plan, a clinic within a plan, and a clinician or set of clinicians within a clinic, as op¬ posed to a single "product." These choices may vary depending on the person's con¬ dition or health status. Nevertheless, people do need to make decisions with limited information, and we think that the data in most "report cards" are too complex and arcane for all but the most sophisticated and dedicated consumers. Researchers could make more use ofthe knowledge accumulated by those who routinely package con¬ sumer product information for the pub¬ lic to develop these ratings. As unsophis¬ ticated as these summary ratings are, they may meet consumers' needs better than more sophisticated presentations. Effective disclosure of other types of plan information (eg, rules and incen¬ tives) also is difficult. There are 2 broad questions that federal or state agencies could address in this area. The first con¬ cerns what information should be dis¬ closed. Suggestions on the elements con¬ stituting an appropriate disclosure statement have been presented else¬ where.60,61 Public agencies could convene a group of health policy experts, clini¬ cians, and consumers to decide what the essential elements of disclosure should be, using processes similar to those de¬ veloped as part ofthe CAHPS project. A public disclosure statement would have to have several characteristics. First, it would have to be brief. Second, effort would need to be devoted to de¬ veloping supporting materials and evaluating the interpretation and under¬ standing of the information provided. The CAHPS project has design experts working on ways to present data from consumer surveys that maximize com¬ prehension and understanding. Public disclosure forms could be developed and evaluated using a similar process.

typically are they are for

SUMMARY OF CHALLENGES The major challenges facing us are these: • To collect information from repre¬ sentative samples of diverse people about the value they place on different types of quality information. • To conduct research on how well dif¬ ferent types of people understand and interpret quality indicators and on deci¬ sion making about health care. • To develop methods of creating and presenting summary evaluations of quality data.


To develop models of collecting, summarizing, and/or disseminating quality data at different levels of system aggregation (eg, plan, clinic, group, cli¬ •

nician). •

ity

To develop ways of collecting qual¬ information for entire episodes of

care. • To develop models that balance the need for general information and the needs of many smaller groups (eg, with chronic conditions) for more specific in¬ formation. • To develop databases of patientbased, condition-specific information about HRQL and other outcomes that would allow patients and physicians to understand better the longitudinal course of illnesses, from the patient's

perspective.

• To continue research to evaluate how well plan differences on outcomes reflect differences in quality of care. • To develop models of how to dis¬ seminate information effectively in dif¬ ferent communities. • To expand the use of interactive systems that allow patients to commu¬ nicate directly with or hear the stories of other patients with similar conditions. • To develop ways of evaluating dif¬ ferent quality improvement strategies (eg, consumer choice vs plan efforts vs

regulation).

WHO SHOULD DO WHAT? Private foundations typically do not have the resources or mandate to de¬ velop projects for setting national stan¬ dards. They have been extremely effec¬ tive, however, in advancing programs of research that may have been difficult to obtain funding for through federal agen¬ cies and that can be more programmatic than the investigator-initiated research funded, for example, by the National In¬ stitutes of Health. One such example is the Picker-Commonwealth Program in Patient Centered Care. This program has supported a wide array of studies by many investigators and supported a na¬ tional fellowship program for young scholars. Since there is no comprehen¬ sive government oversight of health care in the United States, private orga¬ nizations, including accreditation bod¬ ies, such as NCQA and the Joint Com¬ mission on Accreditation of Healthcare Organizations, can be instrumental in defining and disseminating standardized quality information that meets con¬ sumer needs. In the current political climate that views negatively many types of govern¬ ment regulation or influence, it is impor¬ tant not to lose sight of the unique role that public agencies can and should take. One role public agencies can play is to

solicit and synthesize information from all types of persons and use that infor¬ mation to help focus the national re¬ search and policy agenda. Examples of where this has been done by AHCPR are the Patient Outcome Research Team projects, the guidelines program, the CAHPS project, and the Expansion of Quality Measures (Q-SPAN) projects. Investigator-initiated research has re¬ sulted in almost all the major advances in our knowledge about quality measure¬ ment and improvement that we review here. On the other hand, investigatorinitiated research may not reflect well the most pressing needs in a field of in¬ quiry. Directed research programs can be extremely important in advancing our knowledge in these areas. The project most germane to the con¬ sumers' perspectives is the CAHPS project. In spite ofdecades ofresearch in the area of consumer experiences with health care, there was no standard in¬ strument and there was widespread dis¬ satisfaction with some ofthe most com¬ monly used instruments. The CAHPS project has allowed investigators to pool insights and knowledge, rather than de¬ velop competing instruments. It also will allow investigators to pursue a coordi¬ nated and systematic program of re¬ search and development that will result in user-friendly instruments, support materials (eg, an implementation hand¬ book), prototype report formats, and a series of evaluation studies to be con¬ ducted throughout the United States that will help resolve numerous techni¬ cal, practical, and policy issues in this area. Developing and implementing more such programmatic approaches to the challenges summarized above would be an invaluable service to the field and give the consumer perspective appropri¬ ate prominence in the development and use of quality measures. Work on this article was supported in part by the Picker Institute and grants from the Common¬ wealth Fund and the Agency for Health Care Policy and Research (HS09205) for the Consumer Assess¬ ment of Health Plans (CAHPS) project. References

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Managed Care

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Is Not the Problem,

The purpose of this article is to describe what is happening in the provision of health care throughout the Western world and to make a case, although briefly, for using both economic and clinical incentives to change the health system so that more health is produced from it. In this formulation, the quality of care provided, as opposed to the way services are organized or reimbursed, becomes of central concern. Despite evidence from health services research studies that the level of the quality of health care is a major crisis throughout the Western world, this fact is rarely acknowledged by most elements of society. An exception to this statement is the American concern,

From the RAND Health Program, Santa Monica, Calif, and UCLA Center for Health Sciences, Los Angeles, Calif.

Reprints: Robert H. Brook, MD, ScD, RAND, 1700 Main St, PO Box 2138, Santa Monica, CA 90407-2138.

based mostly on individual case reports, that managed care will adversely affect quality of care. Yet even this concern is focused on the potential evils of managed care and not on major problems in producing quality care that exist in every health system in every country in the world. Furthermore, this managed care concern ignores the quality prob¬ lems that have always existed in fee-forservice care and the lack of systems to help physicians provide more evidencebased rational management of their pa¬ tients.

Focus of Debates: On Cost, Not on Access to Quality Care Of course one can find stories about problems in access to quality care in ma¬ jor newspapers in Europe and North America, but most of those stories (and certainly the attention of governments and payers) are focusing on the issue of

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429. 58. Eagle KA, Mulley AG, Skates SJ, et al. Length of stay in the intensive care unit: effects of practice guidelines and feedback. JAMA. 1990;264:992-997. 59. Schectman JM, Kanwal NK, Schroth WS, Elinsky EG. The effect of an education and feedback intervention on group-model and network-model health maintenance organization physician prescribing behavior. Med Care. 1995;33:139-144. 60. Levinson DF. Toward full disclosure of referral restrictions and financial incentives by prepaid health plans. N Engl J Med. 1987;317:1729\x=req-\ 1733. 61. Appelbaum PS. Must we forgo informed consent to control health care costs? Milbank Q. 1993; 71:669-676.

Quality

Is

health care costs. For example, in the United States, even though our economy is booming and the unemployment rate is down to 4.8%, it is still extremely dif¬ ficult, if not impossible, to find stories about developing and implementing a comprehensive program that will pro¬ vide health insurance to all Americans who do not have it. Instead, the public debate appears to be over how to save money in the Medicare program to help balance the budget by the year 2002. In the United Kingdom, although a new party has come into power, there does not appear to be any groundswell to in¬ crease substantially the amount of gov¬ ernment money spent on its national health service. In Canada, there is talk of having insufficient money to pay for the current level of hospital care and of the need to transfer funds from the medical system to other social systems such as education. In European countries, there is debate about how much to pay physi-
