Corporate Logic in Clinical Care: The Case of Diabetes Management.

As large corporations come to dominate U.S. health care, clinical medicine is increasingly market-driven and governed by business principles. We examine ways in which health insurers and health care systems are transforming the goals and means of clinical practice. Based on ethnographic research of diabetes management in a large health care system, we argue that together these organizations redefine clinical care in terms that prioritize financial goals and managerial logics, above the needs of individual patients. We demonstrate how emphasis on quality metrics reduces clinical work to quantifiable outcomes, redefining diabetes management to be the pursuit of narrowly defined goal numbers, despite often serious health consequences of treatment. As corporate employees, clinicians are compelled to pursue goal numbers by the heavy emphasis payers and health systems place on quality metrics, and accessing the required medications becomes the central focus of clinical practice.

"They Treat you a Different Way:" Public Insurance, Stigma, and the Challenge to Quality Health Care.

Under the Affordable Care Act, Medicaid Expansion programs are extending Medicaid eligibility and increasing access to care. However, stigma associated with public insurance coverage may importantly affect the nature and content of the health care beneficiaries receive. In this paper, we examine the health care stigma experiences described by a group of low-income public insurance beneficiaries. They perceive stigma as manifest in poor quality care and negative interpersonal interactions in the health care setting. Using an intersectional approach, we found that the stigma of public insurance was compounded with other sources of stigma including socioeconomic status, race, gender, and illness status. Experiences of stigma had important implications for how subjects evaluated the quality of care, their decisions impacting continuity of care, and their reported ability to access health care. We argue that stigma challenges the quality of care provided under public insurance and is thus a public health issue that should be addressed in Medicaid policy.

Electronic Health Records and the Disappearing Patient.

With rapid consolidation of American medicine into large-scale corporations, corporate strategies are coming to the forefront in health care delivery, requiring a dramatic increase in the amount and detail of documentation, implemented through use of electronic health records (EHRs). EHRs are structured to prioritize the interests of a myriad of political and corporate stakeholders, resulting in a complex, multi-layered, and cumbersome health records system, largely not directly relevant to clinical care. Drawing on observations conducted in outpatient specialty clinics, we consider how EHRs prioritize institutional needs manifested as a long list of requisites that must be documented with each consultation. We argue that the EHR enforces the centrality of market principles in clinical medicine, redefining the clinician's role to be less of a medical expert and more of an administrative bureaucrat, and transforming the patient into a digital entity with standardized conditions, treatments, and goals, without a personal narrative.

Counterproductive Consequences of a Conservative Ideology: Medicaid Expansion and Personal Responsibility Requirements.

Medicaid expansion, a key part of the Affordable Care Act, has been opposed by conservative politicians despite its fiscal and public health benefits. In response, some Republican-led states have expanded Medicaid with new reforms, including requirements for cost sharing and behavioral incentives, that promote conservative political values tied to an ideology of personal responsibility. We examine this trend using Michigan's Medicaid expansion as a case example. We explore the origins, evidence base, and possible consequences of these reforms. We argue that these reforms prioritize ideology over sound public health knowledge, deflecting attention away from the social, economic, and structural factors that influence the health of the poor, and may ultimately contribute to counterproductive public health and fiscal outcomes.

The pursuit of preventive care for chronic illness: turning healthy people into chronic patients.

Preventive health care has become prominent in clinical medicine in the US, emphasising risk assessment and control, rather than addressing the signs and symptoms of pathology. Current clinical guidelines, reinforced by evidence-based decision aids and quality of care assessment, encourage clinicians to focus on maintaining rigid test thresholds that are based on population norms. While achieving these goals may benefit the total population, this may be of no benefit or even harmful to individual patients. In order to explore how this phenomenon is manifested in clinical care and consider some factors that promote and sustain this trend, we analysed observations of over 100 clinical consultations, and open-ended interviews with 58 primary care clinicians and 70 of their patients. Both clinicians and patients equated at-risk states with illness and viewed the associated interventions not as prevention, but as treatment. This conflation of risk and disease redefines clinical success such that reducing the threat of anticipated future illness requires the acceptance of aggressive treatments and any associated adverse effects in the present. While the expanding emphasis on preventive medicine may improve the health profile of the total population, the implications of these innovations for the wellbeing of individual patients merits careful reconsideration.

Pharmacogenetics in primary care: the promise of personalized medicine and the reality of racial profiling.

Many anticipate that expanding knowledge of genetic variations associated with disease risk and medication response will revolutionize clinical medicine, making possible genetically based Personalized Medicine where health care can be tailored to individuals, based on their genome scans. Pharmacogenetics has received especially strong interest, with many pharmaceutical developers avidly working to identify genetic variations associated with individual differences in drug response. While clinical applications of emerging genetic knowledge are becoming increasingly available, genetic tests for drug selection are not as yet widely accessible, and many primary care clinicians are unprepared to interpret genetic information. We conducted interviews with 58 primary care clinicians, exploring how they integrate emerging pharmacogenetic concepts into their practices. We found that in their current practices, pharmacogenetic innovations have not led to individually tailored treatment, but instead have encouraged use of essentialized racial/ethnic identity as a proxy for genetic heritage. Current manifestations of Personalized Medicine appear to be reinforcing entrenched notions of inherent biological differences between racial groups, and promoting the belief that racial profiling in health care is supported by cutting-edge scientific authority. Our findings raise concern for how pharmacogenetic innovations will actually affect diverse populations, and how unbiased treatment can be assured.

Genes, race, and culture in clinical care: racial profiling in the management of chronic illness.

Race, although an unscientific concept, remains prominent in health research and clinical guidelines, and is routinely invoked in clinical practice. In interviews with 58 primary care clinicians we explored how they understand and apply concepts of racial difference. We found wide agreement that race is important to consider in clinical care. They explained the effect of race on health, drawing on common assumptions about the biological, class, and cultural characteristics of racial minorities. They identified specific race-based clinical strategies for only a handful of conditions and were inconsistent in the details of what they said should be done for minority patients. We conclude that using race in clinical medicine promotes and maintains the illusion of inherent racial differences and may result in minority patients receiving care aimed at presumed racial group characteristics, rather than care selected as specifically appropriate for them as individuals.

Changing Diagnostic and Treatment Criteria for Chronic Illness: A Critical Consideration of their Impact on Low-Income Hispanic Patients.

Low-income Hispanics are often identified as especially at risk for common chronic conditions like diabetes, and targeted for aggressive screening and treatment. Anthropologists and other social scientists have extensively explored barriers and facilitators to chronic illnesses management in minority populations, but have not yet considered the impact of recently lowered diagnostic and treatment thresholds on such groups. In this paper, we critically review recent changes in diabetes, hypertension and high cholesterol diagnostic and treatment standards which have dramatically increased the number of people being treated for these conditions. Drawing on an ethnographic study of chronic illness management in two Hispanic-serving clinics in the Midwest, we examine how these new standards are being applied, and consider the resulting health care challenges these Hispanic patients face. Our analysis leads us to question the value of promoting narrowly defined treatment goals, particularly when patients lack reliable access to the health care resources these goals require. While improving the health of low-income Hispanics is a worthwhile goal, it is important to consider whether these efforts may be promoting over-diagnosis and over-treatment, drawing them into an expensive chronic patient role with uncertain benefit.

The changing face of chronic illness management in primary care: a qualitative study of underlying influences and unintended outcomes.

PURPOSE: Recently, there has been dramatic increase in the diagnosis and pharmaceutical management of common chronic illnesses. Using qualitative data collected in primary care clinics, we assessed how these trends play out in clinical care. METHODS: This qualitative study focused on management of type 2 diabetes and hypertension in 44 primary care clinics in Michigan and was based on interviews with 58 clinicians and 70 of their patients, and observations of 107 clinical consultations. We assessed clinicians' treatment strategies and discussions of factors influencing treatment decisions, and patients' understandings and experiences in managing these illnesses. RESULTS: Clinicians focused on helping patients achieve test results recommended by national guidelines, and most reported combining 2 or more medications per condition to reach targets. Medication selection and management was the central focus of the consultations we observed. Polypharmacy was common among patients, with more than one-half taking 5 or more medications. Patient interviews indicated that heavy reliance on pharmaceuticals presents challenges to patient well-being, including financial costs and experiences of adverse health effects. CONCLUSIONS: Factors promoting heavy use of pharmaceuticals include lower diagnostic and treatment thresholds, clinician-auditing and reward systems, and the prescribing cascade, whereby more medications are prescribed to control the effects of already-prescribed medications. We present a conceptual model, the inverse benefit law, to provide insight into the impact of pharmaceutical marketing efforts on the observed trends. We make recommendations about limiting the influence of the pharmaceutical industry on clinical practice, toward improving the well-being of patients with chronic illness.

Are Corporations Re-Defining Illness and Health? The Diabetes Epidemic, Goal Numbers, and Blockbuster Drugs.

While pharmaceutical industry involvement in producing, interpreting, and regulating medical knowledge and practice is widely accepted and believed to promote medical innovation, industry-favouring biases may result in prioritizing corporate profit above public health. Using diabetes as our example, we review successive changes over forty years in screening, diagnosis, and treatment guidelines for type 2 diabetes and prediabetes, which have dramatically expanded the population prescribed diabetes drugs, generating a billion-dollar market. We argue that these guideline recommendations have emerged under pervasive industry influence and persisted, despite weak evidence for their health benefits and indications of serious adverse effects associated with many of the drugs they recommend. We consider pharmaceutical industry conflicts of interest in some of the research and publications supporting these revisions, and in related standard-setting committees and oversight panels. We raise concern over the long-term impact of these multifaceted involvements. Rather than accept industry conflicts of interest as normal, needing only to be monitored and managed, we suggest challenging that normalcy, and ask: what are the real costs of tolerating such industry participation? We urge the development of a broader focus to fully understand and curtail the systemic nature of industry's influence over medical knowledge and practice.

Racialized Risk in Clinical Care: Clinician Vigilance and Patient Responsibility.

Racial/ethnic identity is contingent and arbitrary, yet it is commonly used to evaluate disease risk and treatment response. Drawing on open-ended interviews with patients and clinicians in two US clinics, we explore how racialized risk is conceptualized and how it impacts patient care and experience. We found that racial/ethnic risk was a common but poorly defined construct for both patients and clinicians, who intermingled concepts of genetics, biology, behavior, and culture, while disregarding historical or structural context. We argue that racializing risk embodies social power in marked and unmarked bodies, reinforcing inequality along racial lines and undermining equitable health care.

The ambiguous meanings of the racial/ethnic categories routinely used in human genetics research.

Many researchers are currently studying the distribution of genetic variations among diverse groups, with particular interest in explaining racial/ethnic health disparities. However, the use of racial/ethnic categories as variables in biological research is controversial. Just how racial/ethnic categories are conceptualized, operationalized, and interpreted is a key consideration in determining the legitimacy of their use, but has received little attention. We conducted semi-structured, open-ended interviews with 30 human genetics scientists from the US and Canada who use racial/ethnic variables in their research. They discussed the types of classifications they use, the criteria upon which they are based, and their methods for classifying individual samples and subjects. We found definitions of racial/ethnic variables were often lacking or unclear, the specific categories they used were inconsistent and context specific, and classification practices were often implicit and unexamined. We conclude that such conceptual and practical problems are inherent to routinely used racial/ethnic categories themselves, and that they lack sufficient rigor to be used as key variables in biological research. It is our position that it is unacceptable to persist in the constructing of scientific arguments based on these highly ambiguous variables.

Are good intentions good enough? Informed consent without trained interpreters.

OBJECTIVE: To examine the informed consent process when trained language interpreters are unavailable. BACKGROUND: Ensuring sufficient patient understanding for informed consent is especially challenging for patients with Limited English Proficiency (LEP). While US law requires provision of competent translation for LEP patients, such services are commonly unavailable. DESIGN AND PARTICIPANTS: Qualitative data was collected in 8 prenatal genetics clinics in Texas, including interviews and observations with 16 clinicians, and 30 Latina patients. Using content analysis techniques, we examined whether the basic criteria for informed consent (voluntariness, discussion of alternatives, adequate information, and competence) were evident for each of these patients, contrasting LEP patients with patients not needing an interpreter. We present case examples of difficulties related to each of these criteria, and compare informed consent scores for consultations requiring interpretation and those which did not. RESULTS: We describe multiple communication problems related to the use of untrained interpreters, or reliance on clinicians' own limited Spanish. These LEP patients appear to be consistently disadvantaged in each of the criteria we examined, and informed consent scores were notably lower for consultations which occurred across a language barrier. CONCLUSIONS: In the absence of adequate Spanish interpretation, it was uncertain whether these LEP patients were provided the quality and content of information needed to assure that they are genuinely informed. We offer some low-cost practice suggestions that might mitigate these problems, and improve the quality of language interpretation, which is essential to assuring informed choice in health care for LEP patients.

BiDil: assessing a race-based pharmaceutical.

Isosorbide and hydralazine in a fixed-dose combination (BiDil) has provoked controversy as the first drug approved by the Food and Drug Administration marketed for a single racial-ethnic group, African Americans, in the treatment of congestive heart failure. Family physicians will be better prepared to counsel their patients about this new drug if they understand a number of background issues. The scientific research leading to BiDil's approval tested the drug only in African American populations, apparently for commercial reasons, so the drug's efficacy in other populations is unknown. Race as a biological-medical construct is increasingly controversial; BiDil offers a good example of how sociocultural factors in disease causation may be overlooked as a result of an overly simplistic assumption of a racial and hence presumed genetic difference. Past discrimination and present disparities in health care involving African American patients are serious concerns, and we must welcome a treatment that promises to benefit a previously underserved group; yet the negative aspects of BiDil and the process that led to its discovery and marketing set an unfortunate precedent. Primary care physicians should be aware of possible generic equivalents that will affect the availability of this drug for low-income or uninsured patients.

Do notions of risk inform patient choice? Lessons from a study of prenatal genetic counseling.

Risk modeling is an increasingly important part of clinical medicine; however, "risk status" is a complex notion, understood differently by patients and clinicians. Patients' ability to make informed choices about clinical procedures often requires that they interpret risk statistics, which may be difficult to understand and apply. In this article, which is based on a study of prenatal care in South Texas, we consider how notions of risk affect patient decisions about prenatal genetic testing. The term "risk" carries multiple meanings for clinicians and patients. These meanings may conflate concepts of danger and probability as well as muddle population risk and individual risk. We propose that failure to articulate the varied and contrasting meanings of risk held by clinicians and patients can undermine clinical communication and, thereby, hamper patients' ability to make autonomous, informed choices. Attending to these differences may prove useful in empowering patients to make truly informed decisions.

Clinical myths of the cultural "other": implications for Latino patient care.

PURPOSE: Cultural competency is now a requirement in the curriculum of many health professions. However, clinicians' understandings of cultural difference, the accuracy of those understandings, and their impact on patient care have not yet been carefully explored. The authors conducted an ethnographic study designed to describe clinicians' views of Latino culture in the context of amniocentesis decision making, compared those to patients' discussions of their decision making, and explored how clinicians' views about culture are manifested in consultations with Latinas. METHOD: Between 2000 and 2002, semistructured, open-ended interviews were conducted in southern Texas with convenience samples of 50 clinicians who discuss prenatal testing with patients, and 40 self-identified Latina patients who had been offered amniocentesis. Observations were also made of 101 genetic counseling sessions. Content analysis focused on the cultural characteristics clinicians identified as affecting Latinas' decision making, patients' self-reported decision-making processes, and clinician and patient comments and actions observed during genetics counseling sessions. RESULTS: Most clinicians said Latinas are likely to decline amniocentesis because they are religious, fatalistic, male-dominated, family-centered, and superstitious. However, patients' discussions of their decision making were not consistent with these characterizations. Furthermore, clinicians reported providing less complete information to Latina patients in their efforts to be culturally sensitive. CONCLUSIONS: Comparing patient and clinician interviews bring into question clinicians' notion of Latino culture's role in amniocentesis decision making. Efforts to be "culturally competent," in the absence of a patient-centered approach, may unintentionally encourage stereotyping, thereby negatively affecting the quality and content of clinical care.

The routine and the traumatic in prenatal genetic diagnosis: does clinical information inform patient decision-making?

With the increasing technical sophistication of medicine, clinicians' task of assuring patient informed consent is increasingly elusive. Taking the example of prenatal genetic testing, we examine efforts to communicate the complexities of genetic knowledge and risk calculation to patients. In this qualitative, descriptive study, we interviewed 50 clinicians and 40 patients, and observed 101 genetic counseling sessions. We found the clinicians and patients have different goals, purposes, and values regarding testing, which affect their clinical interactions. The information the clinicians provide patients reflects their clinical interest in identifying and controlling pathophysiology, while patients, in contrast, are most concerned with protecting and nurturing their pregnancy. We argue informed patient decision-making about prenatal testing options requires information that is responsive to patient interests. We recommend developing a shared decision-making approach, to facilitate the full participation of both clinicians and patients in the decision-making process.

Should "acculturation" be a variable in health research? A critical review of research on US Hispanics.

Acculturation has become a popular variable in research on health disparities among certain ethnic minorities, in the absence of serious reflection about its central concepts and assumptions. Key constructs such as what constitutes a culture, which traits pertain to the ethnic versus "mainstream" culture, and what cultural adaptation entails have not been carefully defined. Using examples from a systematic review of recent articles, this paper critically reviews the development and application of the concept of acculturation in US health research on Hispanics. Multiple misconceptions and errors in the central assumptions underlying the concept of acculturation are examined, and it is concluded that acculturation as a variable in health research may be based more on ethnic stereotyping than on objective representations of cultural difference.

Genetic research and health disparities.

Alleviating health disparities in the United States is a goal with broad support. Medical research undertaken to achieve this goal typically adopts the well-established perspective that racial discrimination and poverty are the major contributors to unequal health status. However, the suggestion is increasingly made that genetic research also has a significant role to play in alleviating this problem, which likely overstates the importance of genetics as a factor in health disparities. Overemphasis on genetics as a major explanatory factor in health disparities could lead researchers to miss factors that contribute to disparities more substantially and may also reinforce racial stereotyping, which may contribute to disparities in the first place. Arguments that promote genetics research as a way to help alleviate health disparities are augmented by several factors, including research funding initiatives and the distinct demographic patterns of health disparities in the United States.