Humanizing quantitative data
This week, the foundation published the annual Goalkeepers Data Report, focusing on the impact of and response to COVID-19. As usual, there is plenty of quantitative data in the report, charts, graphs, and models. This year, however, we also worked hard to bring in some qualitative data that would help readers better understand people’s lived experience. We worked closely with a team helping the foundation on a two-year interdisciplinary project called Pathways, which is designed to generate insights about what vulnerability really means for women in two states in India and in Kenya. Chloé Roubert and Micki Semler led the Kenya work highlighted in the report.
In global health, we're used to working with biologists, epidemiologists, and so on. You are social scientists. Why it is so important to have that perspective?
Chloé: I come at it from anthropology which helps better understand the messy complexity of human life. The method of ethnography, and the application of social theory, is a way of going deeper into how human beings make meaning in their lives. They help us to uncover and more deeply understand the different ways that humans draw on social life - social and cultural norms, ideologies, myths, religion, gender, language and more - to create mental models that provide order and meaning to their lives. Health is very critically a social thing, influenced by cultural understandings and expectations, so to design interventions that attempt to improve health we need to take the mental models people create around health in order to be successful.
Micki: Utilizing a social science perspective means understanding a person’s behavior as a product of their context. In global health, we're often talking about the uptake of certain behaviors, stopping certain behaviors, maintaining adherence to things, but in order to be effective at doing that at scale, we have to first understand where people are. Once we know that, we can co-design solutions to meet them where they are. Without being people-centric about someone's individual experience first, we're going to miss what their priorities are.
Pathways has other pieces besides yours. Can describe the whole project at a high level?
Chloé: The goal of Pathways is to design health systems that take into account and are more responsive to different underlying social and environmental vulnerabilities. The inclusion of the social sciences and the exploratory ethnographic work and analysis enabled us to look more deeply and holistically at the why behind these vulnerabilities, and allowed us to move beyond a strictly biomedical or clinical lens.
Micki: Pathways is design-led, and also includes a behavioral science and a data science team. We have taken a holistic and exploratory approach, trying to identify specific social and environmental factors that have the greatest influence on health-seeking behavior. Members of the behavioral science team from Final Mile used what they call an Ethnolab that puts individuals in a lab-like setting embedded in the field and provokes them to make real-time decisions in different health scenarios. These scenarios were embedded in what we learned through the ethnographic research, and when combined with design research methodologies, such as the mapping of women’s life journeys through time, we were able to isolate the themes and variables that consistently emerged in people's decision making and the stories that they told to explain their behavior. The quant team will ultimately substantiate and prioritize the themes and variables that are the most critical drivers of behavior, and allow us to move into the design of solutions that are more tailored to what people want and need.
Can you explain a little bit about the mechanics of your part of the project? How did you find the women you worked with? How did you actually do your research?
Micki: From the very beginning, we engaged local researchers and translators to support us in thinking through how to engage with families. When we paired up, each researcher and translator would be a team in the field, but then when the day finished, it was important to us that we debriefed together and interrogated our different understandings of what we had learned that day. By working with local researchers and translators, we were able to build on what we were learning with very localized and contextual understandings of some really complicated practices like female genital mutilation or polygamous marriage. In this way the learning was very iterative, and our local researchers and translators helped us to build on what we learned in the interviews.
Chloé: The logistics can be complicated when you go into the field. You want to get a strong cross section of people to talk to so you're looking across age, gender, health experiences to find a broad mix. You are also triangulating what you hear from the interlocutors and local collaborators, with the literature review that the team did as a precursor to designing the research. One thing that is really important is that the ethnographic interview is designed to empower the women and men we speak with to drive the conversation toward the topics and themes that are most important to them - of course, within the context of the overarching research questions. For example, we designed a set of cards for our interlocutors to respond to and we'd start the interview by asking them to choose an image representing what they felt was most critical to talk about. It might look a bit messier than a standard question, answer, question, answer of a traditional survey, but it creates more genuine exchanges.
What is something you feel like you've learned about the experience of women in these communities that other folks in global health may miss? What's an insight that has stuck with you?
Chloé: I think it’s very interesting looking at very macro level shifts and then how they manifest at a micro level.
Micki: Yeah. Think about the intergenerational passing of land from fathers to sons. As the plots get smaller, there’s less economic opportunity, and that can then push men to get jobs in casual labor. But during times like COVID-19 when casual labor is harder to find, that puts more economic strain on the household. And with more economic strain, there tends to be increases in stress and higher rates of either violence and substance use. At the end of the day, this impacts health. So our aim is trying to bridge changes that have been happening for generations with things like land tenure down to how someone accesses healthcare in a pandemic. It seems like a very long process, but in reality it is all woven together.
Chloé: Another aspect that struck us is related to how in global health, we want to create a better world. Obviously, we all do. But, what is a better world? And when we would ask women and men, "What do you hope for?" a lot of times the answer was, "I want to become a model, or an actor, or an influencer on Instagram.” In many living rooms, we found posters of McMansions that literally say, "If you pray dreams come true." There would be a McMansion, in the back of a perfect white family with a man and a woman, a boy and a girl, sitting on a lawn with a red Ferrari in the driveway; basically the suburban dream. And what’s so interesting is that a lot of the inequality in the world is because of this dream. It becomes very complicated to try to tease out who decides what a good future looks like.
We've touched on COVID-19 throughout the conversation, but let’s focus on it. Your work is in the Goalkeepers report because you have this really insightful view of how people were reacting to COVID-19 in the moment. As the people who were doing this research, how did you react when COVID-19 happened?
Chloé: Micki’s so empathetic. I think it's her social work background, and she's kept in touch with a lot of these women. And I think, very genuinely, she was asking, How do we help them? And not from a condescending perspective, but just knowing how hard this was going to be she got us to map out a research plan that would be beneficial for Pathways as well as support for these families. Also when we were developing this, in the early days of COVID-19, it felt like everything needed to be rethought—including how to do research—and that was something we were excited to iterate and do with our collaborators in Kenya.
Micki: That was nice, Chlo! I think from a research perspective, we've been asking, families, “who would you call on during times of crisis?” Because this is a large part of understanding vulnerability. But when COVID-19 hit, there actually was a real-time crisis. So in terms of more accurately understanding human behavior and decision-making, it was an opportunity. We ended up seeing that this engagement was mutually beneficial. I really think that given the instability, fears, and unknowns of the situation, a lot of the women we spoke to found the interview as a way of expressing themselves which they appreciated. In a way, many women don’t really have an avenue to advocate for their needs and believe that their voices will be heard.
Do you envision your COVID-19 findings being used now, in actual decision-making?
Micki: Well, the short answer is yes but we're not exactly sure how at the moment. It is incredibly important to us that the COVID-19 research be useful for inspiring action. We recently had a couple of workshops with Gates Foundation teams where we identified areas of opportunity based on the work they have going right now. The final step will be trying to understand what makes the most sense based on feedback from local stakeholders in Kenya. We're going to wait to see, at a local level, what's being done, what isn't being done, and what the priorities are there.
Chloé: I think at the beginning of the pandemic, our thinking was, we need to show what the reality looks like so that the health message or interventions can be implemented properly. And very early on in our work, it became clear that while people are nervous about COVID, this is a socioeconomic experience and that the idea that , “If humans understand it as a health emergency, they will do the right thing” would not work. Now that’s very clear to everyone, but when our report initially came out, it wasn’t fully understood that way. So, I think if we can continue to communicate what communities want and need, we will impact decision-making.
Some of the stories in your work are just brutally sad. I'm curious how you cope with the work and find optimism.
Micki: For me, one of the most effective ways to deal with feeling overwhelmed with emotion is translating it into action. And that was made possible by the local researchers. There were a few times after interviews when the situation within someone's home appeared dangerous or highly risky, and we followed-up with a trained community health worker to make sure that she would return back to the family’s home independently in the future. After gaining an even deeper connection and understanding of their own communities through work with the Pathways project, several of our local research teammates have since started their own social service and advocacy initiatives. I cannot tell you how truly inspired and motivated that makes me.
Chloé: There were some stories that were so overwhelming. The interview with Faith, who’s in the Goalkeepers report, was very emotional. It was very intense. It was too difficult not to tear up with her. What is difficult too is that you don't want to commodify trauma or play into the slum tourism idea: "Ooh, this is so bad." Especially because even with Faith, however difficult her circumstances are, and they are very sad, you also witness... I don't know if it's optimism exactly, but this sort of, "I do have power over my life. I can figure out ways of finding joy and happiness, and I'm going to hustle and figure it out." And I think that's just amazing to witness, how much even when life is just happening to Faith, and many other women, they figure it out.