Individuals with somatic symptom disorders tend to have considerable difficulty with how they experience and appraise their bodily symptoms. The illness and the dysfunctional focus and behavior around

From diagnosis to social diagnosis

Author Phil Brown Mercedes Lyson, Tania Jenkins

Abstract

In the past two decades, research on the sociology of diagnosis has attained considerable influence within medical sociology. Analyzing the process and factors that contribute to making a diagnosis amidst uncertainty and contestation, as well as the diagnostic encounter itself, are topics rich for sociological investigation. This paper provides a reformulation of the sociology of diagnosis by proposing the concept of ‘social diagnosis’ which helps us recognize the interplay between larger social structures and individual or community illness manifestations. By outlining a conceptual frame, exploring how social scientists, medical professionals and laypeople contribute to social diagnosis, and providing a case study of how the North American Mohawk Akwesasne reservation dealt with rising obesity prevalence to further illustrate the social diagnosis idea, we embark on developing a cohesive and updated framework for a sociology of diagnosis. This approach is useful not just for sociological research, but has direct implications for the fields of medicine and public health. Approaching diagnosis from this integrated perspective potentially provides a broader context for practitioners and researchers to understand extra-medical factors, which in turn has consequences for patient care and health outcomes.

Highlights

► “Social diagnosis” recognizes interplay between social structures and illness manifestations. ► Case study shows how Mohawk Akwesasne dealt with rising obesity. ► Provides broad context for practitioners and researchers to understand extra-medical factors.

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Keywords

Diagnosis

Risk

Social movements

Environment

Public health

USA

Canada

Reservations

Introduction

Sociological analysis of diagnosis has achieved considerable influence in the last two decades, providing important insight into how we understand health, disease, and illness. It has also expanded how we view the social and cultural influences that shape our knowledge and practice on health and illness. This includes studies of diagnosis that have gone beyond the interaction between physician and patient, to take into account the larger social, structural, and temporal forces that shape diagnosis (see, for example, the categorization of homosexuality as a mental disorder and the role of gay rights activists in the American Psychiatric Association’s deliberations) (Cooksey & Brown, 1998).

Recently we have also seen the emergence of diseases whose etiologies, symptoms, and, therefore, diagnoses, are often contested or uncertain. This combination of medical and social uncertainty leads us to propose a reformulation of the concept social diagnosis as a new way of thinking about the sociology of diagnosis. This paper explores social diagnosis by first, outlining a conceptual framework of social diagnosis; second, discussing the different actors who contribute to social diagnoses; and third, providing a case study of how to apply our social diagnosis approach. Lastly, we conclude with implications for sociology, medicine, and public health.

Introducing social diagnosis

Social diagnosis is ‘social’ for two reasons: First, it connects an illness or the act of diagnosing that illness to a set of political, economic, cultural and social conditions or factors. Second, social diagnosis is conducted by different social actors, and the actions of one group of stakeholders often spill over to affect the actions of other actors. As we will see, social diagnosis is done by sociologists who study diagnosis, as a way for researchers of social medicine and the social determinants of health to look at the process, outcomes, and consequences of diagnosis. It is also done by the lay public vis-à-vis social movements that expand what goes into the diagnosing process. In this more comprehensive, public version of uncovering the social determinants of health, a condition is diagnosed by a social group—for example, the politicized collective illness identity that arises over a contested disease like Gulf War Illness (Zavestoski, Brown, Linder, McCormick, & Mayer, 2002). Lastly, social diagnosis is a way to expand the lens of the public health and medical establishment in identifying what mechanisms and factors are consequential for individual and community health. Social diagnosis therefore provides a broader context for health practitioners, medical researchers, and social scientists to understand the extent of extra-medical factors in health and illness. With that approach, neighborhood and community environments (which are themselves determined by larger structural forces) can be included in approaches to wellness, highlighting the intersection between individuals and the larger social forces that structure their lives.

A genealogy of social diagnosticians

Social scientists

The roots of this approach are deep. The term “social diagnosis” was coined in Richmond’s (1917) book, Social Diagnosis, considered to be the classic textbook laying a professional foundation for social work, and which focused on examining a wide array of social conditions causing poverty and disease. This was a period when sociology and social work shared many common interests in documenting and alleviating poverty, with the reformist Chicago School sociologists categorizing and analyzing urban social problems that they traced to social structures rather than inborn characteristics.

Even in the early 20th century, sociology focused on the social determinants of health and illness, as in Faris and Dunham’s (1939) work on mental illness. Decades later, Navarro (1976) and Waitzkin (2000), both MD/PhD sociologists, led the charge of other political economy scholars who sought to rekindle social medicine, found as early as Rudolf Virchow’s work in mid-19th century Europe, and more recently in Chile during Allende’s Popular Unity Government in the early 1970s.

A committed approach to health inequalities, rooted in England, worked its way into the literature starting in the 1990s. A leading medical sociologist, Sol Levine, and a prominent social medicine physician, Alvin Tarlov, nurtured this endeavor in their Health and Society group, publicizing well-known British work such as Michael Marmot’s Whitehall Study, bringing key health inequalities researchers such as Richard Wilkinson to the US as visiting scholars, and providing a research setting to nurture new health inequalities researchers (Amick, Levine, Tarlov, & Walsh, 1995). A young generation of US-based scholars brought health inequalities work to the fore, emphasizing race, class, sex, ethnic, and neighborhood differences (Kawachi et al., 1999, LaVeist, 2002, Williams, 1994). These scholars’ work helped push the National Institutes of Health to develop a strong program in health inequalities, though usually termed “health disparities,” a more neutral-sounding phrase. From being only a National Center on Minority Health and Health Disparities, in 2010, NIH transformed the center into a full institute, the National Institute on Minority Health and Health Disparities, signifying a major acceptance of this work.

Public health and medical professionals

Medical professionals and public health scholars in the US share an important tradition of taking into account social factors in their work. For an example of 1960s social medicine that exemplifies social diagnosis performed by a physician, we can remember the work of Dr. Jack Geiger, a founding member of the Congress of Racial Equality (CORE) in 1943, a leader in efforts to end racial discrimination in hospital care and medical schools admission and a 1960s founding member and National Program Chairman of the Medical Committee for Human Rights which protected and provided medical care for civil rights workers. Geiger was famous for diagnosing poverty, racism, and hunger, and writing prescriptions for food to give to poor children, which he and colleagues did to garner public attention. More practically, the community health centers developed in that era diagnosed disease as stemming from a multitude of social conditions. For example, staff would act on these diagnoses by seeking improvements in neighborhood parks and fighting for lead removal and blood lead testing (Lefkowitz, 2007).

While the public health field in the US continued a strong commitment to examining social factors in disease, medicine often trailed after it. Occupational health, environmental health, nutrition, and community health training still remain marginalized in medical education and practice. Federal research, largely conducted through the National Institute of Health, emphasizes treatment over prevention. For example, the prestigious, well-funded National Cancer Institute provides few resources for researching environmental causation, leaving that to the much smaller National Institute of Environmental Health Sciences whose budget is 6.5 times smaller (Brown, 2007) Sociologists have played a role in examining social factors in disease, working alongside public health scholars and community activists in pursuing multi-causal approaches to understanding disease and developing multi-pronged solutions (Brody et al., 2009).

Public participation/social movements

Diagnosis is simultaneously a site of compromise and contestation because it is a relational process. When there is a disconnect between the patient and the medical explanatory model, the individual may be unsatisfied with treatment goals, and collectively work to politicize the illness through social movements. This would be the case especially if people were not given a diagnosis for something which they expected to, or when they received a psychiatric diagnosis for something they believe is physical. The greater the symptom severity or the disconnect between lay and professional perspectives on diagnosis, the greater the likelihood of contestation.

In contesting diseases and conditions, people often seek to reshape or overturn a shared set of entrenched beliefs and practices about diagnosis, causation, and treatment that is embedded within a network of institutions, including medicine, law, science, government, health charities/voluntaries, and the media. This network is the “dominant epidemiological paradigm” for a given disease. Activists challenge the dominant epidemiological paradigm by shifting the modes of scientific inquiry, and by refocusing regulatory and policy attention (Brown, 2007). Scientists may be asked to weigh in on questions that are virtually impossible to answer scientifically, either because data do not exist or because studies required to answer the question at hand are not feasible. Scientists may frame political, moral, or ethical questions in scientific terms thus limiting lay participation. This scientization protects the illusion of medical omnipotence and delegitimizes questions that cannot be framed in scientific terms (Morello-Frosch et al., 2006). Health social movements may respond to these situations by marshaling resources to conduct their own research and produce scientific knowledge in a process known as “popular epidemiology” (Brown, 2007). In doing so, they democratize the production of scientific knowledge and then use that transformed science as the basis for demands for improved research on disease etiology, treatment, prevention, and stricter regulation.

These concerns may extend into the legal realm when diagnoses are a classification of what the individual’s health status could be in the future. Exposed people may seek redress through medical monitoring torts in advance of injury, in an attempt to offset the costs associated with periodic testing in order to ascertain whether a given exposure has led to changes in health status (Maskin, Cailteux, & McLaren, 2001). Even US law now recognizes that disease is no longer a unique collection of symptoms equaling a given condition, but rather a constellation of current symptoms, previous exposures, and future potential manifestations, all of which make the art of diagnosis even more precarious.

The democratization of medicine and science we have mentioned above is made possible by bringing the discussion of diagnosis out into the open, rather than keeping it restricted to professionals. Krimsky (2002) notes that the endocrine disrupter hypothesis (that argues for the central role of endocrine-disrupting chemicals in many diseases) was discussed quite extensively in the public light, far beyond the shelter of academic journals and government funding agencies. His notion of a “public hypothesis” helps us see that increasingly, challenges to scientific orthodoxy are shaped by public discussion in the media, social movement organizations, virtual communities, and other accessible formats (e.g. homosexuality, post-traumatic stress disorder). When people view their diagnosis as stemming from a particular toxic exposure, they are rarely satisfied with the simple act of diagnosis. Rather, they seek evidence of causation in order to seek redress in various forms: medical coverage, medical monitoring, relocation, compensation, assignment of blame, and (less commonly) the incalculable but valuable apology from responsible parties. As discussed earlier, in the absence of a specific diagnosis, people with a shared environmental exposure sometimes file suits for medical monitoring, to ensure that they have lifetime checkups to diagnose a disease process as early as possible.

Yet despite a rich history of social diagnosis exercised by various actors, including sociologists, public health officials and the public, the above-mentioned strands have not yet been well-connected, nor woven into a social diagnosis framework. Below, we discuss several elements of a social diagnosis model.

A social diagnosis approach is more comprehensive than a political economy/health inequalities outlook that accounts for how larger social structures affect diagnostic processes. In social diagnosis, we also must “socially diagnose” those structures themselves. In this light, we would argue that the injured foot of a ballet dancer is not merely an injury caused by a pointe shoe. It includes the larger setting of the balletic art form – its teachers, theaters, dance companies, dance critics – as socially iatrogenic. It includes gender roles that force-fit women into many uncomfortable clothes and shoes, and anorexogenic notions of beauty that limit the art form. Our diagnosis would be of an unhealthy foot in an unhealthy art form in an unhealthy culture. Treatment and prevention goes beyond the individual, seeking to restructure power, capacity, and community in the surrounding society.

Traditionally, diagnosis dealt with diseases and symptoms in the past and present, with future orientation toward only treatment and prognosis. Indeed, even attempts at incorporating social factors into diagnosis (either by healthcare professionals or sociologists) do not adequately account for a third dimension of time; that is, the future. Today, potentiality is an important concept, where a biomarker may or may not indicate future diseases. This potentiality introduces new contestations and foci; preventive medicine now goes beyond generic health advice, to consider borderline categories: pre-diabetes, pre-high cholesterol, pre-hypertension. Further, patients are increasingly prescribed pharmaceuticals to regulate these borderline conditions (Welch, Schwartz, & Woloshin, 2011). Therefore, a social diagnosis approach must contend not only with past and present conditions, but explicitly consider the potentiality of future conditions, specifically because they may have social causes and consequences.

The process of diagnosis is carried out by multiple social actors, including medical professionals, researchers, government agencies, private corporations, social movements, and legal institutions. For example, we can understand the role of public health agencies in new forms of surveillance geared to population exposure measurement and to the diagnosis of pre-disease. Combined with increased academic and advocacy research in this area, biomonitoring and household exposure has opened vast new realms of seeing potential disease causes at microscopic levels. Therefore, in a social diagnosis framework, not only are social factors considered in the diagnosis, but a variety of social actors are contributing to the creation of that diagnosis. In doing so, they diagnose not only individuals but societies—a practice which is growing ever more important in light of increasing biomedical uncertainty.

To further elaborate on and exemplify this idea of social diagnosis, we will use the case of obesity and diabetes in Akwesasne, a Mohawk reservation straddling New York and Canada. This situation demonstrates how diagnosis has moved from the individual to society, and is being performed by more than just doctors.

The multiple layers of diagnosis in obesity and diabetes: A case study of social diagnosis in action

Obesity and diabetes have become a major concern of both environmental justice and health groups in the 2000s. There is broad understanding that, in addition to individual and lifestyle factors, obesity is caused by numerous social phenomena: increased consumption of processed foods (especially high fructose corn syrup), food deserts, poor school lunch programs, a decline in school physical education, and unsafe recreation spaces. Social diagnosis looks here at an unhealthy body within an unhealthy community, itself situated in an unhealthy food system.

Hoover’s (2010) medical anthropological study of local food production and community illness narratives in the Akwesasne Mohawk community found diabetes to be a central concern. Rising prevalence indicated a rate higher than both the state and national averages, and lay awareness of this led to a complex set of diagnoses. Residents in this highly contaminated area (primarily due to PCBs and fluoride from local industry) believed that there were two potential pathways through which contamination increased diabetes risk. The direct pathway was based on recent science linking exposure to endocrine-disrupting chemicals, to obesity (Baillie-Hamilton, 2002, Newbold et al., 2007). The indirect pathway was based on fear of contamination, including fish advisories and concerns over soil contamination, leading people to abandon traditional local foods for less healthy processed foods, and hence also getting less exercise since they were not gardening and fishing. This second pathway, rooted in a risk society perception, also led to changes in the traditions and cultures of the community, leading to a broader social illness.

We do not imply here that the discovery of contamination led to obesity. Rather, the discovery of the toxicants set off a cascade of events that meshed with other reservation developments, which then involved dietary and agricultural changes. Such changes have occurred in other communities, sometimes because of contamination discovery and sometimes for different reasons such as urban decline. This then leads to the departure of groceries with fresh produce or to the immigration of people from more self-sufficient food regimes to urban locales flooded with fast-food restaurants and completely lacking any resources to continue traditional practices.

Using Chaufan, 2004, Chaufan, 2008 work, Hoover argues that the medicalized approach to diabetes individualizes and depoliticizes the problem. Alternatively, a political ecology framework emphasizes social, economic, and political institutions of human environments where diabetes is emerging. Hoover adapts Scheper-Hughes and Lock’s (1987) model of three bodies – the individual body, the social body and the body politic. As Hoover points out, in addition to losing the nutrition from fishing and gardening, people also lost the physical and cultural activity involved in that food production. This led to fewer burned calories, affecting the individual body, but also to broader losses affecting the social body – the failure to connect with ancestral ways and to pass traditions onto youth. Eating is an important social experience, and the sharing of food is an integral part of Mohawk culture, full of morals around cooperation and proper behavior. This larger unity of the body politic is especially important at present, when the community is less united due to overlapping tribal, US, and Canadian governing bodies. Akwesasne environmental health activists used their mobilization around contamination as a way to achieve general social unification and harmony. When people seek to take control of individual and social levels of obesogenic and diabetogenic conditions, this crisis that originates in massive contamination has the capacity to provide new unity.

In effect, we see that what might appear as a straightforward diagnosis of a metabolic disease is in fact much more complex. Hoover’s analysis of the social diagnosis of this condition builds on the community-based participatory research by the laypeople and traditional healers of Akwesasne, in alliance with university scholars and environmental health scientists, and implicates individual, social and cultural, and body-politic disease contributors. Such analysis informs us that by the time it reaches the body politic, biological disease goes to the core of the social fabric, and warrants an overall restructuring of power, capacity, and community. Further, we see that struggles over diagnosis are simultaneously struggles over causation. In this light, we can understand the multi-temporality of diagnosis: it is not only about the present, where people seek knowledge about the symptoms they experience. It is also about the past, whereby people seek the causes of problems that led to a current diagnosis. As well, it is about the future, where the medical and social sequelae of the diagnosis reside along with the treatment and prognosis.

Conclusion

Studying diagnosis provides a window into many components of health and illness, and presents an organizing configuration and master frame. Our expansion into understanding and elaborating on social diagnosis makes this broader framework more applicable to an even greater number of research arenas. The act of diagnosing an illness is important on multiple levels. It is about an individual’s relationship to the illness or act of diagnosis, the collectivity of people who suffer from an illness, and the larger social structures that influence the illness and its diagnosis. In other words, it is about locating an individual and a group in relation to key social structures.

In this paper, we have sought to understand the unique context in which social diagnoses are formed—a sociology of social diagnosis. To reiterate, social diagnosis is social in that it considers both larger social structures, as well as the various social actors which contribute to the diagnosis. In other words, a broad range of social factors goes into the making of a diagnosis, which is carried out by a myriad of social actors. The diagnosing of individuals can allow for the broader diagnosis of a group of illness sufferers, and an even broader diagnosing of communities, as the Akwesasne example clearly illustrates. From here, we have drawn five key lessons which will not provide a one-size-fits-all framework, but will help pragmatically identify the role social diagnosis can play across many different situations and among different constellations of actors:

Social diagnosis moves beyond individual-level explanations for health outcomes;

Social diagnosis recognizes commonalities in the group experience;

Social diagnosis moves beyond a diagnosis that is limited to treating or identifying symptoms and toward identifying more macro-structural roots. From here, it prescribes identifying and treating the fundamental causes of the problem, as opposed to just the proximal symptoms;

Social diagnosis relies on scientific evidence, but recognizes that useful science might not always come from mainstream sources, particularly when it involves laypeople;

Lastly, social diagnosis is attentive to changes across both the short and long term. It moves beyond a cross-sectional approach to diagnosis and instead preferences a multi-temporal approach to diagnosis, one that changes over time.

Social diagnosis offers three benefits: it is a concept that can be used by diverse actors -- medical sociology and other medical social sciences, public health, and medicine; it is not only about diagnosing individuals, but also about diagnosing institutions and organizations; and it is simultaneously a description of our analytic approach and a prescription for how to intervene. Social diagnosis can be an interesting tool for sociologists in various specialties within the discipline, as well as researchers outside the discipline. For example, environmental sociologists examining a disease such as asthma can take students on toxic tours in order to show the neighborhood factors and pollution sources related to asthma. Social diagnosis can also be applied to medical history and science, technology, and society analyses of disease concepts and medical practices. The social diagnosis approach offers valuable lessons for physicians and other health professionals. In particular, the cursory instruction in occupational and environmental medicine in medical school can be countered through showing professionals how to ask appropriate questions about environmental and occupational exposure. ‘Narrative medicine,’ formulated by Rita Charon (2006), teaches medical students and physicians to attend to the totality of life experience through eliciting and listening to patient stories, in order to more thoroughly diagnose them. Pediatrician Rosalind Wright diagnoses asthma as being exacerbated by violence at home and in inner-city neighborhoods (Wright & Steinbach, 2001). This leads her to seek intervention strategies aimed at reducing violence exposure, reducing stress, and counseling victims, in addition to more traditional asthma treatment. At a preventive level, she urges policy directions that address the social, economic, and political factors that contribute to crime and violence.

Social diagnosis as a concept may not seem new to sociology, but it has yet to be developed into an enunciated framework and program for research and/or action. For example, sociologist Eric Klinenberg’s account of the 1995 Chicago heat wave introduces the notion of social autopsy by effectively conducting a post-mortem of the natural disaster and the various social factors that affected its victims (2002). In doing so, Klinenberg provides a social diagnosis of the heat wave, citing social isolation as one of the main causes and prescribing changes in the social structure to prevent relapse. This could serve as a very potent framework for sociologists and practitioners alike to carefully and systematically consider those social factors that play a crucial role in health. Also, while medical sociology recognizes many extra-medical factors, the environmental factors so important today have not been widely considered. Hence, there are still lessons to be learned about the multi-factorial causes of morbidity and mortality. Sociologists also continue to face uncertainty in knowing which social factors they ought to focus their attention on. Further, clinical examples such as those above may seem logical to medical sociologists, but they are not generally accepted in the world of medicine. If medical sociologists work with clinicians and public health practitioners, they may be able to jointly develop effective ways to use social diagnosis for both treatment and prevention.

Acknowledgments

We are grateful to David Ciplet, Alissa Cordner, Leah Greenblum, Bindu Pannikar, and Allison Waters for comments.

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