Two Pink Lines and the Fear of Death: Why Community Orientation is Critical to Public Health Interventions
Jan 17, 2018
National Geographic Explorer Dr. Christopher Golden and his team of Harvard Planetary Health Scholars spent six weeks in Madagascar to better understand the human health impacts of environmental change. This series of stories will document this journey across Madagascar through the personal experiences of these students.
By Sarah Guth, UC Berkeley graduate student and Planetary Health Scholar
The unraveling of my self-constructed purpose as a researcher began with a pair of faint pink parallel lines. I would have missed it –- lost in the machine-like efficiency of the MAHERY (Madagascar Health and Environmental Research) team’s blood-sample assembly line -– but when a squirming, needle-averse child momentarily broke the team’s rhythm, I glanced down at the row of malaria rapid diagnostic tests (RDT). RDT number 079 had a pink streak next to “C”, the control, indicating that the test had worked properly, and another next to “1” – Plasmodium falciparum, positive. By then, patient 079 had already been ushered out of the clinic. I couldn’t recall anything specific about him or her besides preparing the glass slide, wiping off its edges, loading it into the hemoglobinometer, reading off its hemoglobin count, and disposing of it as I prepared to receive the next blood droplet. I wondered, would he or she be blindsided by the diagnosis, or had there been symptoms? Had the illness affected his or her ability to work? Would the pink dye stain the family’s livelihood? The wailing child quieted and the team resumed their rhythm, passing the child’s sample around the dimly lit hut.
I’ve always been drawn to research’s objectivity. It’s my license to think rationally –- an escape from the constant tug of war between my instinctive practicality and my tendency to feel strongly. I love efficiently and precisely executing structured protocols, distilling data analyses, and communicating results in sterile scientific speech. After two years as a nonprofit administrator, I was eager to reenter the research world by beginning my PhD in August at UC Berkeley. I’d spent the first four weeks of our trip musing about science with the other students, journal-writing about research project ideas, and anticipating our one-week overlap with the MAHERY team’s study of nutritional status and disease burden in villages in the southwest of Madagascar. So when it was my turn to participate in the 4 a.m. blood-sampling routine, I did my best to assume my objective scientific identity, detaching from my pre-dawn sleepiness and fear of needles.
But the RDT lines were more than a sample, they were a diagnosis for a debilitating disease. And a single-digit number on the hematocrit screen was more than a statistic, it was an indicator of severe anemia. As an undergraduate, I had studied macroinvertebrates, butterflies, and bumblebees –- but never humans. Suddenly, I felt unsettled by the disparity between my love of data and the heavy reality of what data can mean to an individual human subject.
This wasn’t the first time I had struggled with the transition from studying insects to studying humans. During the months I spent working on my graduate applications, I had grappled with a reoccurring question: how can I ethically “extract” data from developing communities? Eventually, I decided that my solution would be to conduct research that could have a direct impact on the communities I studied. I declared myself an applied researcher, insisting that driving local change motivated me. In my graduate grant application, I attributed my interest in human vector-borne disease to “a passion for conducting research with human application and a pressing need to address how global environmental change is affecting human health”. I undervalued my fascination with how diseases linked the human world with the broader global environment, how viruses borne by the peridomestic Aedes aegypti mosquito infiltrated urban society. Driven by a preoccupation with informing local intervention strategies, I proposed a spatio-temporal analysis of the socio-ecological and climatic drivers of Zika virus in San Juan, Puerto Rico.
I had based my “purpose” on a misunderstanding of the relationship between researcher and research subject. I assumed my research would feed a one-way knowledge flow and that my role was to inform local communities. But in the dimly lit Malagasy hut, the pink parallel lines tugged at the loose threads of this self- constructed purpose. The MAHERY team depended on the Malagasy villagers –- their willingness to participate in the study, their strength, and their hospitality. The team would treat villagers who tested positive for malaria and severe anemia. However, the majority of the villagers were not there to receive medication –- they were not experiencing any symptoms (not infected or anemic) or their anemia was not severe enough to be treated. Despite the lack of a concrete personal incentive, they came to donate their blood, shuffling through the pre-dawn darkness wrapped in blankets. Mothers calmed crying children, men extended arms that would harvest the rice fields after sunrise, and elders offered skin weathered by years of desert sun. They understood that their blood would likely not improve their lives as individuals, but that their information would help answer larger questions about health.
It occurred to me that this study design –- where the subjects gave samples without receiving any direct benefits –- had the potential to be perceived as taking advantage of the community. However, a two-way, reciprocal flow of knowledge and materials between the MAHERY researchers and villagers –- not necessarily a focus on informing local interventions –- prevented the study from feeling extractive. Dr. Christopher Golden, the fearless leader of our student trip and founder of MAHERY, has established the local Malagasy communities as partners in his research. In each village, he takes the time to explain the purpose of his research, and ultimately returns his results and photos to the community.
Our first night in the Southwest, he presented a brief of the MAHERY study at a village meeting, communicating seamlessly in fluent Malagasy. In response, the villagers welcomed the MAHERY team, lending their huts and chairs, and providing food and water. When locals invest in his studies by agreeing to participate, Chris reciprocally invests in their communities. He has built schools and funded teacher salaries, employed locals as research assistants, sponsored children’s education, thanked villages with zebu feasts and soda, and made the effort to learn and respect local cultures. In his 18 years working in Madagascar, he has developed many close relationships with locals whom he now refers to as his mothers, fathers, brothers, and sisters.
Chris’ partnership with the Malagasy communities he studies enriches his research. A mutual trust and respect has given him a window into local life, adding to the authenticity and applicability of his work. His research on how diet affects nutrition and disease burden is more accurate because households trust him enough to report their illegal bushmeat consumption in his dietary surveys. He has designed an effective poultry vaccination intervention because he knows that education is the key to disarming local distrust of vaccinations. He learns from the locals’ deep, intimate understanding of their own environment and communities.
When I first grappled with the question “how can I ethically ‘extract’ data from developing communities”, I overemphasized the importance of applied research. Having never observed human research in practice, I misunderstood the relationship between researcher and research subject, and underestimated the local community’s knowledge and strength. In order to inform intervention strategies that accurately account for local culture and systems, I will need to partner with the communities involved. But even then, I won’t always have the answers.
The Malagasy who gave blood and participated in focus groups and surveys were not motivated by the promise of an intervention. They were partners in research; they had knowledge to give. In the coastal northeast village of Marafototra, we helped Chris pilot a study of the relationship between the strength of social relationships and welfare. A focus group participant asked us, now that we have told you about how we help and care for our neighbors, will you share this culture of love and respect with your own people? Local communities need to be heard, not saved.
I expected to be struck by the devastation caused by Cyclone Enawo, the category-4 storm that hit Madagascar in March. Instead, I was struck by the strength and resilience of the affected Malagasy communities. While running in Maroansetra, I saw a mother and child effortlessly balancing baskets on their heads while traversing the narrow beams of bridge that had been washed out by the storm. I turned around, not daring to risk crossing.
In overemphasizing the importance of applied research, I limited my intellectual curiosity. I suppressed my pure fascination with the ecology of vector-borne disease and prioritized asking questions that could inform local interventions. But I’ve realized that impact and fascination are not mutually exclusive. My fascination is an important piece of how I will ethically and respectfully collect data from developing communities. Fascination drives passion –- the passion that compelled Chris to build partnerships and fully invest in the communities he researches. In focusing exclusively on research with practical application, I risk missing the opportunity to connect with local communities –- to learn from them and see the beauty of their environment through their eyes.
I risk never understanding pieces of their world that may not have practical application at first glance –- foundations of their culture such as a deep knowledge of ethnomedicine or the strength of community bonds. Without dismissing my practical instinct, I need to allow myself to feel strongly. In graduate school, I still want to be a part of informing local intervention strategies, but I also want to be curious. I want to ask big questions –- to study the relationship between nutrition and disease severity, how the human immune response differs between populations, how disease information spreads.
I want to build lifelong relationships with the communities I study –- to be fluent in their language and understand their culture. I want to embrace the tug of war between my instinctive practicality and tendency to feel strongly because I want to be a researcher who can strike a balance –- between research application and fascination, and collecting data and investing in a community.