The Outcomes Movement as a Shift from Internal Medical Assessment to Health Communication
Bernice A. Pescosolido, Thomas W. Croghan, and Joel D. Howell
Major currents of health communication research look to the infl uence of phy- sician-patient communication on health care outcomes, how features of health care shape physician-patient communication, and the way that health risk and programs are communicated to the public through media (see Haskard, Summer, & DiMatteo, this volume; also Thompson, Dorsey, Miller, & Par- rott, 2003). Yet, despite its impressive accomplishments over the past 40 years (Parrott, 2004, also this volume), even a brief review of the burgeoning body of research on health communication seems to point to a gap and an opportunity.
Although issues of change and innovation are not foreign to its research foci (e.g., telemedicine, Turner, 2003), it seems that little work directly addresses a major shift that has accompanied the health care reforms of the late 20th and early 21st century, specifi cally the large-scale collection and use of outcomes data designed to improve the quality of care. That is, pushed by concerns about escalating costs, increasing reports about health disparities, and the entry of new, managed forms of care, there has been a move toward accountability in medicine requiring data on the effects of care, be they reports of patient satis- faction, an assessment of costs, evaluations of whether procedural guidelines were followed, or tracking the impact of the provision of medical care. By any measure, outcomes data have become a major element of 21-century medicine shaping issues of access to health care, the medical encounter between “pro- viders” and “consumers,” and health policy initiatives, including the organiza- tion and fi nancing of care.
Of course, physicians, policy makers, and the public always have been con- cerned with the outcomes of health care, trying to make sense of whatever patterns emerged from personal or clinical observations they made. But the key to its relevance to health communication research is the shift in the collection and intended use of data. Research on medical outcomes initially was internally focused—physicians informing physicians of what works, what side effects may be expected, and how to better organize practice. This is the traditional use of outcomes data and its relevance for health communication lies in the ability of these kinds of measures to provide feedback to physicians and researchers about how the physician-patient interactions may shape what happens after
the medical encounter. For example, researchers have looked at how physician- patient interaction shapes satisfaction (Sullivan, Stein, Savetsky, & Samet, 2000) and follow-through with medical recommendations (Schneider, Kaplan, Greenfi eld, Li, & Wilson, 2004). In the language of the outcomes movement (Andersen, Rice, & Kominski, 1996), practice quality (i.e., “what occurs in the interaction between a patient and a provider,” p. 151) infl uences outcomes (i.e.,
“the intermediate or ultimate results of efforts to prevent, diagnose, and treat various health problems encountered by the population,” p. 161).
The 1960s and 1970s, however, represented an important tipping point when health services researchers, rather than physician researchers, began to systematically bring sophisticated methods and data to document the out- comes of health care. By the 1990s, the focus on accountability and choice under health care reform suggested that outcomes data could and should be disseminated to help the public make decisions about their own care, to allow policy makers to examine how public funds should be used, and to assist insur- ance companies in adjusting their policies on covering particular procedures, providers, and health care organizations. That is, outcomes data took on new forms and roles. In our various roles, we have been involved in the develop- ment of “report cards” that have been or are being designed by most state governments, theoretically, to make outcomes data available so that the pub- lic may make informed choices about which publicly-fi nanced providers and health care organizations to use. In addition, we have been involved in the development of organization-based efforts to implement the outcomes move- ment and have interviewed senior health care managers about how they see the benefi ts of outcomes tools and requirements to use them.
In essence, health care reforms have shifted outcomes data from internal, expert discourse to health communication. It is this recent turn in the con- cern with health care outcomes—a turn accompanied by the idea that health information communicated to various “stakeholders” is a lynchpin of health care reform—that we refer to as the “contemporary” or “modern” health out- comes movement. It includes any systematic attempt to assess the effect of health care in a defi ned population, combined with the intent to produce health communications that may change health policy, medical practice, and health behaviors based on those fi ndings. “Data-based decision-making,” “uti- lization review,” “report cards,” and “outcomes research” (e.g., see Tanenbaum, 1999) all represent a shift in emphasis whereby information is to be provided back to health care providers and organizations, insurance companies and other payers, and the public.
Yet, it is this form of health communication that opens up new research possibilities in the research agenda of health communication. There are rea- sons why it has not yet moved to the center of health communication con- cerns. Much of health communication focuses on research that can humanize medicine and medical care (e.g., understanding and improving the medical encounter, moving toward patient-centered medical care; see Stewart, 1984).
Unexamined Discourse 43 Despite its best intention to empower stakeholders, health care reform seems to move in the other direction, interjecting more technical and fi nancial issues into medical care, imposing access limits and introducing fi nancial incentives for both providers and patients. Further, the outcomes movement may require stretching the kinds of typologies that help organize theories and investiga- tions. Health communication researchers make the distinction between verbal and symbolic communication (Haskard et al., this volume). The process by which outcomes data are collected, understood, and used does not fi t neatly here and is even outside of health communication research’s focus on media.
In staking out a claim that health communication research should target the outcomes movement, we will need to focus on all three types of discourse (societal, expert, and lay), how they have become intertwined over time, and how formal efforts to assess the outcomes of care have been understood and responded to by examining the informal communications of the lay public (see Thompson, 2003, for defi nitions).
In any case, our purpose in this chapter is to introduce the health outcomes movement and conceptualize it as an opportunity to understand a new form of contemporary health communication, one that purports to align with the emphasis on patient-centered care. In this sense, it fi ts squarely within the tradition of health communication research because we are interested in the underlying meaning and real effects of communication on health care. Here, we review the historical forms that discourse on measuring outcomes has taken, the progression in expert efforts to measure them, and the meaning the public attaches to these efforts and their participation in them. Specifi cally, we fi rst trace the attempts, originally in medicine, and then in health services research to assess the outcomes of health care. We ask how and why specifi c types of outcomes measurement took shape when they did, particularly the shift to bringing in patients’ “voice” and communicating back to public stake- holders. Second, we examine the scientifi c attention to the measurement of outcomes. We look at the nature of the major instruments being used, discuss their implications for health communication, and chart changes in scientifi c publication on outcomes. Finally, and most importantly, we explore the mean- ings that the lay public reads into the effort to measure what matters to them in the outcomes of health care. Here, we try to get “underneath” the writ- ten version of a “simple task-oriented exchange” (Cegala, 1997), assessing the match between the explicit goal of the outcomes movement, its most famous instrument (the SF-36), and the reality of what individuals think about the process, the targeted outcomes in the SF-36, and how they approach provid- ing feedback. We also take up one of the challenges of health communication research’s call to focus more on issues of culture and ethnicity (Kaplan, Gan- dek, Greenfi eld, Rogers, & Ware, 1995) by exploring how African Americans in Boston, Latinos in Los Angeles, and Whites in Indianapolis think about outcomes of care and the effort to get their feedback.
In sum, this chapter sets the historical context for the rise of the widespread
use of patient communications on health care outcomes and provides a prelim- inary look at how individuals in three cities see the attempt to collect relevant outcomes data directly from patients. Our guiding purpose is to look at the contested meanings of “outcomes.” For health care reform, outcomes measure- ment is supposed to bring science (i.e., a science of reliability and validity) to the empowerment of patients and payers. Our preliminary exploration into what individuals think about this effort reveals that, at minimum, the effort does not always tap into what matters to patients, and at its worst, is viewed by individuals as an attempt to deny them care, rather than empower them.
Particularly to the African Americans we spoke with, outcomes measurement symbolizes the potential power to deny them health care and they respond accordingly to formal requests to fi ll out surveys. If outcomes data are only as useful as the information people bring to them, then our analysis suggests that the outcomes movement has missed its mark, tainted by lay suspicion of what really underlies the effort to ascertain their reaction to care. Our focus on con- tested meanings reveals a sharp contrast between the goals and intentions of the outcomes movement and the perceptions and practices of lay stakeholders.
Importantly for health communication research, the limits of our exploration into the meaning and measurement of outcomes to patients opens up a range of questions that require the theories, insights, and methods of the fi eld of health communication.
The Rise of Societal Discourse on Medical Care Outcomes, Data Collection, and Dissemination to Stakeholders
The Pre-Outcomes Era:Physicians Communicate Among Themselves Outcomes research always has been implicit in the ideology of clinical care.
As far back as the 1600s, researchers like John Graunt compiled data on births and deaths in London, noting the relative mortality rates of various diseases (Kreager, 2002). In the 1800s, Pierre Louis wondered if bleeding was an effec- tive therapy for patients with pneumonia who were being treated in Parisian hospitals, asking if it was better to bleed early or late in the disease, and ques- tioning if it was better to bleed a great deal or only a small amount. He con- cluded that bleeding simply did not lead to better outcomes, but—not for the last time—his numerical conclusions were generally disregarded by clinicians with whom he worked (Bollet, 1973; Davidoff, 1999; Massey, 1989; Matthews, 1995; Warner, 1986). In the mid-19th century, others like Austin Flint, Sr., best known for his work on heart murmurs, also analyzed statistical data on the outcome of bloodletting. His analysis on patients at Charity Hospital in New Orleans led him to abandon bloodletting as an appropriate treatment for pneumonia (Leslie, 2002).
Although this sort of work on outcomes was discussed among members of the medical community, the dissemination stopped there. There were no
Unexamined Discourse 45 insurance providers to mediate care, nor was such work likely to be known to the mainly illiterate hospitalized patients treated by Louis and Flint. This is not to say that no patients had knowledge of outcomes or reacted to their own observations of outcomes. In one of the most famous medical studies of the 19th century, Ignaz Semmelweis demonstrated that if clinicians cleaned their hands with chlorine between doing autopsies and examining pregnant women in labor, it would prevent women from death due to childbed fever (Carter, 1983). He observed, and then studied, a striking difference in the outcomes on two wards in the Vienna General Hospital: Women on the physicians’ ward were far more likely to die than women on the midwives’ ward. In general, formal communication of these health outcomes were limited to the relatively closed world of the medical community. Nonetheless, informal communica- tion processes were in operation: these differences in mortality rates were well known to women in Vienna, who went to great lengths not to be admitted to the physicians’ ward.
By the turn of the 20th century, many Americans came to believe that science and technology held the key to all manner of betterment, includ- ing health care (Freidson, 1970; Pescosolido & Martin, 2004; Starr, 1982). In this new world, a Boston surgeon undertook one of the most important early attempts to do the sort of systematic, population-based data collection that has come to be seen as the sine qua non of the outcomes movement. Surgery was the bold, new medical method of the day, and E. A. Codman wanted to know which surgeons and surgical practices led to better outcomes. He pro- posed an “end result system,” a set of ideas and methods not that different from what would later become the core elements of the late 20th-century outcomes movement. Codman proposed systematically tracking the results of opera- tions amongst his surgical colleagues in order to make judgments about which procedures and which surgeons were better than others. His efforts, however, became bogged down in two ways. First, the political and social power of Bos- ton surgeons eventually prohibited this sort of encroachment on their individ- ual autonomy, hard-won as part of the initial social contract between scientifi c medicine and American society (Pescosolido & Boyer, 1999). Second, the technology needed for such large-scale information management simply did not exist. Codman’s workspace was a large piece of lined paper. He started to write down the results of each operation by each surgeon. Eventually, the paper became so large and the handwriting so small that he could proceed no further (Davies, 2001; Donabedian, 1976, 1989, 1990; Kaska & Weinstein, 1998; Neuhauser, 1990; Reverby, 1981; see also Johnson, Vinh, & Sweet, 2000, on Codman’s bone tumor registry).
Experts Take Over: Enter Health Services Research
Technological changes by mid-century improved researchers’ ability to do out- comes research in very important ways. New survey techniques made it pos- sible to acquire data directly from patients, whereas new computing devices
made it possible to store and analyze large collections of data. The innovations were at fi rst centered in a few specifi c places (e.g., University of Michigan’s Survey Research Center, the Bureau of Applied Social Research at Columbia University, and the National Institutes of Health; see Bloom, 2002; Susser, 1985). These institutions are important, not only because they served as actual sites for data analysis and developed an important set of new technologies (i.e., surveys), but also because their creation served as a marker for increasing attention to research outside of medicine and for the training of a generation of researchers who would create health services research.
The early 1950s saw the creation of the fi rst surveys that asked patients to self-report their health status. If this new technology could effectively measure the health of the public, it could be used to measure the health of different populations, some of whom had been exposed to one or another heath care intervention that could be contrasted. Surveys could then be considered as a tool to evaluate the impact of various interventions on health. Although initial efforts focused on understanding how the public evaluates health and health-care problems, their use of the medical care system became a major concern of those interested in issues of access, adherence, and effectiveness (e.g., Anderson, 1966; Howell, 1993).
But using surveys to assess outcomes requires a decision about what con- stitutes an “outcome.” Shortly after surveys started to be widely used, health- services researcher Avedis Donabedian (1966, 1988b) made an important conceptual leap when he introduced what continues to be the dominant model for evaluating the quality of health care. His basic framework divided health care provision into the triad of structure, process, and outcome. At the same time that Donabedian was developing his theory of how to evaluate health care, new technology was making it possible to collect, share, and analyze data on a large scale. This new technology included not only computational devices but also data networks. Pen and paper gave way to large, room-size, punch- card-programmed computers of the 1950s and 1960s, which, in turn, gave way in the 1970s and 1980s to desktop, and soon laptop, devices with data man- agement and analytic capabilities that outstripped even the wildest dreams of Codman and his contemporaries. These devices brought data management into offi ces and institutions all around the country (Donabedian, 1985, 1988a).
By the mid-1980s, local data management was within reach of many academ- ics and health professionals. In the 1980s and 1990s, a new network—the Internet—became available for data sharing. Since that time, the Internet has become part of everyday existence for Americans1 and an essential element in the daily life of those who study health care.
Near the end of the 20th century, people who wanted to assess health out- comes had readily available new tools for acquiring data (such as surveys), tools for thinking about that data (the trio of structure, process, and outcome), and tools for manipulating that data (such as computers and the Internet).
Unexamined Discourse 47 More than Academic Research: The Modern Outcomes Movement Takes Shape
In this chapter, we assert that the development of new tools combined with changes in stakeholder response to the costs of and access to medical care gave birth to a new sort of “outcomes movement” (Andersen et al., 1996). Some his- torians suggest that modern outcomes assessment has its origins in the 1960s in studies by Robert H. Brook, a clinician at the Johns Hopkins University School of Medicine. Brook reviewed the process of care for patients with three common disorders: hypertension, urinary tract infections, and ulcers (e.g., Brook et al., 1983; Keeler, Brook, Goldberg, Kamberg, & Newhouse, 1985;
Vickrey et al., 1994). Seeking to discover how patients felt about the outcomes of their care, he asked specialists and generalists to review the treatment of 300 patients with these conditions. Eight out of 10 times the physicians judged the treatment to be more effective than their patients judged it to be; special- ists proved no better than generalists at matching the patients’ assessments.
Whatever defi nition of “effective” one chose to adopt, it became clear that there were very clear differences in perceived outcomes between those provid- ing and those receiving the treatment.
Others date the contemporary outcomes movement to the work of John Wennberg, Alan Gittelsohn, and their colleagues in Codman Associates at Dartmouth University. In the 1970s, their geographically-based analysis showed wide regional variation in the use of services (e.g., hip replacement sur- gery, prostatectomy, CT scans, ultrasounds). More importantly, that variation was associated with little difference in health care outcomes (e.g., Wennberg
& Gittelsohn, 1973). These fi ndings led many to wonder about unnecessary surgery, inappropriate care, and rising costs, as well as to ask about the rela- tionship (if any) between provision of health care and outcomes (see Paul- Shaheen, Clark, & Williams, 1987, for a review).
A third major effort credited with spearheading a new wave of outcome- focused research began in 1971 when the National Center for Health Services Research, now the Agency for Healthcare Research and Quality (AHRQ), awarded the Rand Corporation more than $80 million to conduct the Health Insurance Experiment (HIE), still one of the largest controlled experiments and health policy studies in history. Involving over 2,750 families and more than 7,700 individuals at six sites across the country, HIE families replaced their existing health insurance policies with one of 14 experimental policies that varied with respect to coverage and out-of-pocket costs (e.g., Newhouse &
The Insurance Experiment Group, 1993).
HIE participants fi led claims with the study, were given physical examina- tions, and completed questionnaires once a year to produce data on the state of their health. The HIE pioneered the criteria by which health status and qual- ity of care could be measured, including the SF-362 (e.g., see Ware, 2000; Ware, Kosinski, & Keller, 1996; Ware & Kosinski, 2001). In the end, the HIE showed