Pharmaceutical Care, Public Experiments, and Patient
Knowledge in the Brazilian Public Healthcare System
Adviser: João Biehl
Alex K. Gertner
“Instructors like Professor Biehl encourage us to always imagine things differently while also respecting the relative limits of our knowledge and understanding, to be both bold and skeptical in our pursuit of a better and more just world.”
My thesis began taking shape long before I had given any thought to what I would write about. In the summer after my sophomore year, I was offered an internship at a health technology assessment company in Brazil that produced economic analysis that the Ministry of Health used to inform public policy. I expected to learn the ways in which policy could be rationally formulated based on scientific evidence. To my surprise, I found that uncertainty was a central component of the company’s work and rationality was at best wishful thinking. While the Brazilian government confidently announced in official publications that it was implementing “rational, evidence-based” policies, the actual production of evidence used to inform decisions was a highly imperfect and easily corruptible process. International methodological standards reflected ideological biases and allowed easy influence from commercial interests. Drawing from my experience and observations, I wrote my junior paper on the ways uncertainty is discredited, veiled, and displaced in the production of evidence for use in public health policy.
This internship was made possible by a project Professor João Biehl began in order to give undergraduate students opportunities to conduct independent and self-motivated research projects. The group, which grew to include more than a dozen undergraduate students, as well as graduate students and postdocs, met regularly and was a continuous source of inspiration, motivation, and fascination. Throughout, Professor Biehl offered us stalwart support and endless encouragement while challenging us to be the new generation of global health scholars and practitioners, to think critically but not prejudicially, to innovate methodologically, and to respect and value the human voice and experience.
As the time for thesis planning approached and as I listened to other students’ projects during our group meetings, I began to appreciate the endless research possibilities ahead of me. Narrowing the scope of my research seemed a daunting task. Rather than try to sift through projects until I found one that seemed unique and appealing, I tried to come up with a goal. During my internship in Brazil, I was able to appreciate how far evidence production and policy formulation are from the everyday experience of real-life patients in need. The form and content of evidence used to inform policy made no effort to reflect the priorities or challenges of real patients. I decided that the goal of my thesis would be to try to allow patients to be knowledge-actors rather than merely knowledge-subjects, to try to make national institutions and global theories accountable to patients’ experience and expertise. In order to do this, I would have to conduct more fieldwork. Professor Biehl helped me assemble a list of possible programs and scholarships for which to apply for researching funding.
Developing a goal gave me direction, and finding a specific project became much easier. I had spent the last three weeks of my summer after interning at the health technology assessment company in southern Brazil assisting Professor Biehl with research into access to medicines through the Brazilian court system. During that trip, I came to know of a novel evidence-based reference center for the treatment of hepatitis C. I was not particularly interested in hepatitis C. In fact, I knew little about it. But I wanted to explore how evidence informed public policy and clinical practice and in what ways patients experienced and contributed to the effects of scientific evidence. I made arrangements to return to the treatment center in the summer after junior year to conduct fieldwork without knowing exactly what would follow.
I spent early June to the end of August of 2009 conducting participant-observation in the treatment center. I interviewed the staff, patients, public health officials, scientists, and health care providers. Many patients reached the treatment center through lawsuits, so I conducted participant observation in the public defender’s office, where many lawsuits originate, and interviewed state lawyers and patient litigants. I reviewed the center’s data and accessed case documents from patients’ lawsuits hoping to gain insight into the nature, use, and role of scientific evidence in accessing treatment.
Despite the many hours of interviews and observations and the countless pages of notes, something was escaping these efforts. Nowhere did patients have an opportunity to speak on their own terms. In the treatment center, there already were hints that patients were pursuing health and well-being beyond the hospital doors when they brought family members to accompany them, when they spoke about the importance of religion or volunteer work, or when they discussed the devastating repercussions of side effects for social relationships and income-generating activities. Disease, treatment, technology, and health did not only exist in the treatment center and so could not be understood merely within it. I sensed the need to get to know patients outside of the treatment center, but felt uncertain and, frankly, a good bit frightened. Reminding me of all I had already accomplished, Professor Biehl pushed me to go further. I left the treatment center to conduct home visits with patients, speak with their families, and accompany them to their activities, and it turned out to be the most rewarding portion of my research trip. In all, I interviewed 20 patients and conducted home visits with five families.
The writing did not come easily at first. I had trouble organizing the amount and complexity of information and experience I had gathered during the fieldwork. Professor Biehl advised me to think in terms of chapters, each one in a way akin to a research paper. The first chapter documented the everyday relationships of care and exchanges of well-being that patients and caregivers formed in the center. Patients and caregivers both valued these exchanges and counted them as a significant component of treatment, but the relationships of care were discounted or ignored in evidence produced concerning the center and its successes. The second chapter concerned the making of scientific evidence in the center, its use in policy, and its application and interpretation in court cases. Through the production of scientific evidence in the center, patients became experimental subjects and were exposed to risk without voice or recourse. The last and most important chapter concerned patient knowledge. This chapter was an attempt to learn and relate what patients already know about disease, treatment, healing, and suffering through their professional, familial, personal, religious, and other social interactions, experiences, efforts, and imaginings.
In many ways, I felt particularly privileged to be an anthropology student during the thesis-writing process. Anthropology is a field that does not limit itself. It is both accessible and ambitious. Conducting research at a young age is risky. Princeton takes a chance that students will be empowered to change the world without feeling entitled to make prescriptions to peoples and places they hardly know or understand. Instructors like Professor Biehl encourage us to always imagine things differently while also respecting the relative limits of our knowledge and understanding, to be both bold and skeptical in our pursuit of a better and more just world.
I returned to southern Brazil, where I had conducted my fieldwork, shortly after graduating and found that there was significant interest in my research. I was invited to give two talks and was even interviewed on the evening news. I also had the opportunity to see patients I had met during my research and was surprised to find that they were eager to catch up and discuss the results of the project. I have Professor Biehl to thank for all the lessons and accomplishments that have resulted from this journey. Through all the advice, guidance, challenges, and encouragements, Professor Biehl taught me the importance and true meaning of a people-centered approach to research, treatment, and care. A people-centered approach holds the potential not only to make global health theories and institutions accountable to patients’ pressing needs, legitimate desires, and knowing concerns. A people-centered approach offers the opportunity to remake these theories and institutions in the image of patients’ expertise and in the service of their humanity.
Pharmaceutical Care, Public Experiments, and Patient
Knowledge in the Brazilian Public Healthcare System
Alex K. Gertner
Professor of Anthropology
“Alex’s preconceptions changed during fieldwork, and, as a good researcher, he adapted to these changes.”
I love teaching and I believe that students are this University’s most precious resource. Senior theses, the culmination of students’ academic efforts, oftentimes prove that they also are the University’s most daring thinkers and visionaries. I continuously marvel at the unexpected results of students’ hard work and dedication. Advising students in their senior thesis work means nothing less than participating in the search for a vision and voice of this generation of global thinkers and creative practitioners. Advising students is a privilege and a thrilling experience.
Alex Gertner’s award-winning senior thesis is all around a work of thoughtfulness and care. From his sophomore to senior year, Alex was a key member of my interdisciplinary research team investigating the future of global AIDS treatment and the social determinants of health. During the summers of 2008 and 2009, Alex joined me in southern Brazil. He collaborated on my study of right-to-health litigation and carried out extraordinary independent research on the delivery of high-cost, complex medical treatments in the country’s ailing public health care system. He explored the possibilities and limits of current efforts to expand treatment access (particularly for hepatitis C) through rights-based judicial mobilization and South-South technology exchange programs. The thesis is public anthropology at its best.
Governments all over the world are struggling with questions of treatment access, medical costs, and paradigms of care. Undergraduates can and should contribute to pressing global debates. In his thesis, Alex challenges dominant theories and discourses concerning the provision and pursuit of health in resource-poor contexts. He uncovers components of care that are not included in typical accounts of successful cost-effective health care delivery projects.
Alex’s preconceptions changed during fieldwork, and, as a good researcher, he adapted to these changes. While he originally intended to spend his time in a health care setting, Alex came to realize that in order to meaningfully explore the ways in which patients pursue health and healing, he needed to move from the clinic to patients’ impoverished households. This adjustment of the research produced the most interesting and compelling materials Alex gathered, and it resulted in innovative analysis.
A central point of the thesis is that health care providers struggle to provide not only cost-effective treatment but also compassionate care. Alex learned that patients greatly value the opportunity to ask questions and form social bonds with their health care providers. In addition, patients emphasized the importance of social networks, particularly familial and religious ones, for treatment adherence. This patient knowledge can be immensely useful for caregivers as they strive to improve treatment adherence and encourage activities that ease treatments’ side effects.
In sum, through a commitment to a people-centered approach, the thesis analyzes the effects of treatment strategies, care practices, legal initiatives, national policies, and scientific projects on patients’ lived possibilities and experiences. It provides valuable evidence and insights that can improve public institutions seeking to deliver quality treatment and to fulfill people’s right to health.
In conducting research and writing his thesis, Alex did not limit himself to traditional disciplinary boundaries. Rather, he drew on the wide array of knowledge acquired through coursework in many fields and constructed a thesis that comprehensively reflects the experience of patients, health care providers, scientists, and public officials in Brazil. The thesis blends a deep knowledge of scientific concepts with multisited ethnography and a sophisticated critical analysis of pressing sociomedical problems and institutional responses. Alex is committed to the application of this knowledge toward the improvement of public health practices in Brazil and beyond. His thesis is guided by a deep commitment to making health systems accountable to the needs of their users, particularly the most vulnerable.
Alex’s thesis involved significant challenges, from organizing a large amount of research materials to maintaining a steady and timely writing schedule. As with other advisees, Alex and I found it helpful to set clear deadlines for the completion of sections of the thesis, as well as dates for receiving back comments and providing revisions. A common challenge for undergraduate students is a relative unfamiliarity within existing scholarship. However, a thesis cannot be only an exercise in the application of existing theories. The best theses show an understanding of theories as well as their limitations in such a way as to produce forward movement in critical thought and analysis. Alex’s thesis presented a particular challenge as he addressed issues in several disciplines, from cultural anthropology to clinical research to public policy. I provided him with reading suggestions and we met to discuss ideas and texts.
Princeton’s senior thesis work offers the opportunity to raise the bar of what this generation of global scholars and citizens can accomplish through a liberal arts education. Undergraduates are uniquely positioned to integrate theory and practice, to make bold observations and discoveries. The thesis allows students to put forth a vision of not just what is, but what is possible. I encourage students to dare—to know existing bodies of knowledge, theory, and points of view and also to challenge them to become more connected and accountable to the pressing questions of the world we now live in.