Anthropologist Erica Caple James on Medical Humanities
How culture and behavior impact illness, treatment, and health outcomes
“Through research and findings about the interactions of culture, behavior, illness, and therapy, the social sciences can contribute tremendously to the design and implementation of technological and medical interventions.”
— Erica Caple James, Associate Professor of Anthropology
As MIT works to advance solutions for global challenges in the realms of innovation, education, planetary environment, and human health, MIT’s School of Humanities, Arts, and Social Sciences has tapped key scholars and researchers to provide insight into meeting these challenges from a wide range of disciplinary perspectives.
As part of The Human Factor Series, which looks at how political, cultural, and economic realities of the human world are critical to advancing solutions to major issues, SHASS Communications spoke with Associate Professor Erica Caple James, an anthropologist whose research focuses on how illness intersect with culture, human rights, violence and trauma, democracy-building, and post-conflict transition processes.
James participated in the initial MIT SOLVE conference sessions on how to leverage innovations in health-care delivery and medical research to make care affordable and universally available. We asked her to share her thoughts on this and other questions related to global healthcare challenges.
Q: What has your experience as a medical and psychiatric anthropologist taught you that can help solve today's global health and healthcare challenges? In particular, what kinds of social innovations might we need to develop to help technical innovations in the healthcare arena to succeed?
As a medical and psychiatric anthropologist, I study historical and cross-cultural understanding of illness, healing, and bodily experience as they are inflected by power inequalities, health and healthcare disparities, changing conceptions of race and gender, and political and economic insecurities.
My discipline’s methods are typically comparative and qualitative — encompassing participant observation in long-term engagement with communities, institutions, or research sites. We also use formal and informal surveys, archival research, and in some cases, quantitative analyses to answer particular research questions.
The hallmark of anthropological methods is “ethnography,” which describes both the type of intensive, sustained, empirical data collection in which we engage and also the customary textual product of our investigations. This intensive and “slow” method of empirical research enables anthropology to offer rich material with which to understand illness, disease processes, institutional forms of care, and the technologies best employed to promote health and prevent disease.
Anthropologists also understand that technologies do not always offer the appropriate healing approach, nor do they necessarily transfer easily across borders — whether cultural, economic, political, or national. Biomedicine, the biosciences, and biotechnology also have the capacity to overly “medicalize” illness conditions that are rooted in structural challenges such as poverty, political strife, and other inequalities.
Q: Can you give a few examples of how the technological and cultural dimensions of health care can interact?
A good example is from the domain of mental health. My own work on democratization and post-conflict rehabilitation in late-1990s Haiti suggests that a lack of donor coordination in the provision of posttrauma psychosocial services produced redundancies and conflicts over aid, a cycle that has been repeated in the post-earthquake period in Haiti.
An open technological platform that could register both donors and recipients of aid could have done much to reduce graft and improve the quality of care. However, if such technology had been available, a fraught political climate and lack of accountability on the part of governmental and nongovernmental interveners (both domestic and international) would likely have impeded its successful implementation.
Q: How do cultural ideas about illness influence the success of medical technology?
Here's one example: my research in Haiti showed that Western biomedical conceptions of post-traumatic stress disorder (PTSD) were problematic. With its roots in Western European conceptions of shell shock, railway spine, hysteria, and the post-trauma suffering of American Vietnam War veterans, the diagnostic criteria for PTSD does not accord with either Haitian biomedical or folk understandings of the relationships between mind, body, and behavior.
If the fundamental understandings of the causes and treatments for “trauma” or “depression” are invalid (in a given culture), should pharmaceutical interventions be introduced to remedy such conditions? Anthropological research in Haiti suggested that interventions that restored the social roles that individuals had enjoyed, prior to becoming victims of political violence, were as effective in restoring their well-being as pharmacological interventions.
Q: You have also written about the role of bias in medical treatments. Can you tell us something about how that manifests?
Ethnographic and qualitative research methods can show how therapeutic assumptions about infectious diseases can contain biases that arise from the contexts in which understandings of illness and disease originate.
For example, in the early discussions of whether Africans who were HIV+ were capable of “compliance” with antiretroviral therapeutic regimens, their culture and presumed lack of a formal sense of time was held to be a factor inhibiting whether these patients could comply with taking medications on a regular schedule.
In contrast to these erroneous suppositions, HIV/AIDS researchers working in southern Africa used qualitative methods to identify the strong role that food and water insecurity, as well as gendered vulnerabilities, played in preventing adherence to antiretroviral treatments.
These researchers and others have since asked, how might lesser access to sustainable sources of nutritious food adversely influence both rates of HIV infection globally, as well as access and adherence to treatment?
Conversely, researchers have found that treatment regimens that incorporate social interventions to improve food and water security — agricultural development assistance, microfinance lending, and other strategies that promote socioeconomic independence — improve adherence, reduce social stigma among those persons living with AIDS, and improve mental health outcomes.
Numerous researchers have shown how infection spreads along socioeconomic fault lines, not only globally but also locally. According to the Centers for Disease Control and Prevention, in the United States, contemporary rates of HIV infection continue to increase among African Americans. New infection rates among heterosexual African American women are four times that of their white and Hispanic women counterparts.
Although vaccine research is critical and vital, it is also important to consider other forms of prevention. How can our research and sociotechnical innovations shed additional light on and reduce the causes of these kinds of health disparities?
Improving livelihoods requires a multipronged approach, from “slow” research to understand the complex dynamics of this ongoing public health crisis, to promoting policy changes to incentivize prevention of the spread of new infections, to the encouragement of economic entrepreneurship; however, empirical “ground-up” research often provides critical information regarding the appropriateness and feasibility of any proposed technological or therapeutic intervention.
"Anthropology can provide insight into the social dynamics that may be embedded in, but also escape, statistical analysis. Anthropology can shed light upon the social practices that contribute to unexpected or unanticipated results. Our discipline can also show how terms that are taken for granted — race, gender, poverty, inequalities, etc., and even the disease categories themselves — can become subsumed within a medical model uncritically."
Q: What economic, political, and cultural issues do you think most need to be addressed to make progress toward MIT’s global health care goals?
behavioral dimensions of health
In the course of the presentations and discussions at an MIT SOLVE session on infectious disease, a number of the speakers noted the challenge that human behavior plays in the transmission of HIV and also in the development of resistance to antiretroviral therapies.
One audience participant, citing evidence of drug failure among two-thirds of a cohort of newborns to 19-year-old young adults in Southern Africa, questioned the success of these medications in reducing viral loads. The respondent’s comment, in effect, was something like: “As long as behavior is part of the equation, antiretrovirals will have limited durable impact.”
impact of cultural practices on health outcomes
Behavior, in the form of cultural practices, also entered the discussion in another example. One of the panelists spoke about research on HIV/AIDS in Southern Africa and noted that the first point of care is often the traditional healer. The panelist's group had developed a program in which these local cultural experts were trained as HIV counselors who also tested their clients and presumably referred them for care.
Using qualitative approaches to understand the pressure points in communities that render some individuals more vulnerable to disease and less able to access and adhere to treatments is critical.
assessing the role of structural inequalities in health outcomes
In addition to this, social scientists and humanists who are well versed in the structural inequalities that many communities face from Boston to Botswana can also help to determine those actors who are capable of advocating on behalf of the vulnerable as partners on projects in which biotechnologies and therapies are developed and transferred.
Yet, the underlying issue in either of these infectious disease cases is whether basic science, clinical science, engineering, and the therapeutic technologies produced in each domain, can address the macrostructural issues related to prevention and treatment.
the role of insecurity in behaviors that impact health
The most significant challenges to global health are actually conditions that are largely lifestyle or “behaviorally driven” diseases in contexts where everyday life is insecure. In developing contexts, lack of access to affordable pharmaceuticals and medical technologies, medical infrastructures weakened by political conflict and legacies of colonial and authoritarian regimes, and insufficient medical personnel, remain significant components of any quest to improve health and reduce the cost of care, especially for the poorest.
aging in place
In addition, in many developed countries the highest costs of care arise from lifestyle conditions as well as an expanding elderly population. Creating technologies that could permit the elderly to “age in place” with less costly care and monitoring could play a significant role in improving “health.”
Q: What are some of the barriers to multi-disciplinary, sociotechnical collaborations?
One of the challenges to multidisciplinary collaboration is the “silo effect” in terms of our respective disciplines. Each expert tends to speak to others in her field and less so across disciplines. In academia, there are few incentives to develop cross-disciplinary research projects or teaching opportunities, and these dynamics in the pedagogical and research environment are microcosms of the funding environment nationally and internationally.
In terms of the funding available to address the “grand challenges” in global health and global mental health, for example, there are few incentives for researchers to develop interdisciplinary approaches that incorporate qualitative or ethnographic methods and a trend toward validating success or failure of an intervention solely by tracking biomarkers. Yet, the quest to “solve” enduring health problems requires more complexity. Another issue is the vast differences in scale in which biomedical, scientific, and engineering experts are working. How one develops the language to speak across disciplines, but also at various scales, is critical.
Q: As President Reif has said, solving the great challenges of our time will require multidisciplinary, sociotechnical problem-solving. Can you share why you believe the tools and perspectives from anthropology are valuable for addressing the world's economic needs?
Anthropology can provide insight into the social dynamics that may be embedded in, but also escape, statistical analysis. Anthropology can shed light upon the social practices that contribute to unexpected or unanticipated results. But our discipline can also show how terms that are taken for granted — race, gender, poverty, inequalities, etc., and even the disease categories themselves — can all too easily become subsumed within a medical model uncritically.
For example, the promise of genetic and genomic technologies in identifying the risk factors for lifestyle diseases and mental illness can be too easily employed to the exclusion of recognizing the historical, economic, political, and structural conditions that produce biological vulnerabilities for the “racial” and “ethnic” cases described above.
As an example, one anthropologist has described how Barbados has essentially offered its population as test subjects for research on the biological determinants of a variety of lifestyle conditions such as diabetes and asthma in order for the resource poorer nation to participate in and receive the benefits of new medical and bioinformatics technologies. However, the environmental conditions and behavioral practices that increase the risks of developing diabetes and asthma are not the target of the intervention. By proxy, the sociocultural, economic, and environmental risks that contribute to the ill health of many in the Barbadian population are “racialized” — ill health is viewed as a result of genetic rather than social factors requiring policy changes, education, and economic development.
In cases like the risk for high cholesterol in the United States, for example, other anthropologists have shown how pharmaceutical companies have altered how science is conducted, and how the results of clinical trials are evaluated, in order to expand the market share of statin drugs. By expanding the boundaries of which populations are considered “pre-ill” and the threshold by which one is considered at risk in order to reduce the challenges that “metabolic syndromes” pose to public health, prevention has become “pharmaceuticalized.”
My hope is that the expertise that MIT possesses across its five schools can be employed to recognize the perils of overly medicalizing many of these social challenges, while our scholars continue attempting to reduce the cost of care and improve its availability worldwide.
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Story prepared by SHASS Communications
Human Factor Series Editor: Emily Hiestand, Communications Director
Senior Writer: Kathryn O'Neill
Top photograph: Dominick Reuter, MIT News