"Go Home and Fix Your Healthcare System": A Medical Anthropologist's Path

MCL Backstory

By Alissa Bernstein Sideman

Ethnographic fieldwork is an anthropological research method that involves interviews and participant-observation. It enables a researcher to spend in-depth time immersed in people’s daily lives to gain an understanding of a particular topic or issue. The anthropologist examines how people live and shape their lives around this topic or issue. Anthropologists also study how big processes, such as a health reform, impact people’s lives and how they respond to it. 

I studied cultural and social anthropology during my undergraduate years. I had my first experience conducting fieldwork during that time, focusing on community participation in politics in a Tibetan refugee community in Northern India. I was inspired to develop a career in the field of anthropology based on this experience, with the hope of bringing together my interest in political anthropology and my desire to study health care systems.  

I pursued a PhD in medical anthropology where my fieldwork centered around the origins, design, and circulation of a newly implemented health policy in Bolivia, which emerged as part of a national health reform. The health policy, Salud Familiar Comunitaria Intercultural, or the Family Community Intercultural Health Policy, focused on addressing social, environmental, and cultural determinants of health through community participation, health prevention and promotion, and intercultural medicine. Significantly, the health reform was initiated because of the election of the country’s first indigenous president, Evo Morales Ayama.  I found, through my research, that the policy’s design and inspiration had come from people and organizations throughout the country who would actually use it; traditional healers, midwives, activists and community leaders. I spent 15 months doing oral histories with health policy makers (who included social scientists, public health workers, and medical doctors), and participant-observation and interviews in rural and indigenous communities, at health policy events, and in clinics and NGOs. This decolonized and community-engaged approach to health and health policy design resonated with my values. 

The final interview I conducted in Bolivia was inspirational and changed the course of my career. The interview was with the Bolivian Minister of Health, a woman who had previously been a medical school professor and political militant and who was guiding the development of the new health policy. I expressed my wish to continue to delve deeper into the ideas at the core of the Bolivian health reform. She told me to get a degree in public health and work to fix my own healthcare system using inspiration from what I had learned in Bolivia.  When I returned to the United States, I got my public health degree while completing my dissertation. I then sought a way to use my anthropological training and what I learned in Bolivia to address a major challenge in the US health care system. This opportunity arose in the course of my postdoctoral training. 

As a fellow at the Philip R. Lee Institute for Health Policy Studies, I was encouraged to choose a specific disease or condition around which to focus my work. My grandmother had Alzheimer’s disease and lived with my family for a time. Dementia was a disease with no cure, and was the site of a lot of thinking fruitful for anthropological engagement. Dementia’s effects are so profound because they exceed the person with the illness, impacting all areas of family and community life. I realized I was interested in the social and cultural issues around dementia and caregiving in both healthcare settings and in the community.

Dementia was also a compelling research focus because it provided a space to utilize my prior work in Bolivia: there was a need to think about health promotion and community engagement when improving dementia diagnosis and care in the primary health care system. Primary care settings offer the possibility for long-term, in-depth relationships between patients and clinicians, where providers may seek to engage a holistic view of their patients’ social and medical contexts. 

Currently, I do research in two areas. First, I focus on understanding and improving the diagnosis and care for people with dementia in primary care settings. I work on teams with neurologists and neuropsychologists who are developing new diagnostic tools. I conduct anthropological fieldwork focused on improving the implementation of these tools by engaging primary care providers as champions in the process.  I also conduct research in primary care safety net settings on how to improve the care of people with dementia who have co-existing chronic comorbid conditions and face social and structural barriers to care. 

My other body of work expands on the health policy lessons I learned in Bolivia by focusing on care navigation for family caregivers of people with dementia . The caregiver and patient are recruited as a pair, but a lot of the intervention is focused on the caregiver. Along with a team at the UCSF Memory and Aging Center, I am studying the implementation of this care navigation program, called the Care Ecosystem, which was first developed at UC San Francisco and University of Nebraska Medical Center. The Care Ecosystem is now available as an open-source toolkit for use by health systems. It involves a care navigator supported by a team comprised of a social worker, nurse, and pharmacist. I am using my anthropological approach to study the implementation of the program at multiple sites across the United States. 

Looking back over the arc of my training and career, I see that I’ve found a way to incorporate in a day-to-day way what the Bolivian minister of health inspired me to do. My anthropological approach—one of ongoing engagement with the people most impacted by a health issue and their social and cultural contexts—has enabled me to bring together the lessons I learned in Bolivia with US-based work on health systems and serious health care issues.