Sharon asked to be interviewed at a gas station restaurant. It was close to her home so the trip burned minimal gas. And, it had air conditioning. In the middle of a Texas summer she had forgone paying her electric bills in order to purchase refills of the medications she needed to survive. Over the course of several interviews spanning three years, Sharon’s story—which involved giving up her own employment and its associated health insurance to help her husband begin his own business, a subsequent divorce, becoming the primary caregiver for her ailing mother, and then a catastrophic illness of her own that left her hundreds of thousands of dollars in debt, unable to work, and consequently unable to address her spiraling health issues—is one of many we have heard in our studies of health care coverage in the United States.
In Unequal Coverage: The Experience of Health Care Reform in the United States, which will be published by NYU Press this fall, we recount these stories and discuss what they reveal about class, race, stratification, and the US health care system more broadly. As anthropologists we collect and analyze people’s stories because we believe that listening to how people experience their coverage and care is not only informative but absolutely essential to understanding how health policies, like the Affordable Care Act, affect individuals and communities.
This story-centered approach to examining health policy, however, is barely tolerated in mainstream policy circles. One recent example is a blog post on the Health Affairs website written by economists Katherine Baicker and Amy Finkelstein. Based on their own research into Medicaid expansion in Oregon, these authors argue that stories are little more than anecdotes that are incapable of providing the “evidence” necessary to develop and assess health policies. Instead they contend that more “rigorous” methods, and particularly randomized controlled trials (RTCs) are needed. Here we respond to their anecdote insult and question what they mean by rigor. We also explain why it is ill-advised for those involved with health policy to ignore the stories that people tell about their health care.
What are stories? Why do they matter?
In their blog post Baicker and Finkelstein suggest that “stories” are data points to plot on a graph, that those that cluster near the regression line are somehow truer than the outliers. Using this approach, a story alone is an anecdote; in a data set that has been quantitatively analyzed, a story might rise to the level of data. Though this is a fairly standard way that some researchers conceptualize stories (more broadly referred to as qualitative data or ethnography), it is, however, an impoverished view.
Stories represent a different kind of truth than survey responses or other types of measured behaviors that can be aggregated into a quantitative data set. At their heart, stories are an act of self-representation that tell us how someone makes sense of and understands their world. Stories issue from a particular person’s perspective, and who the person is telling their story to can make a difference. Anthropologists and other researchers collect stories because we are interested in how people present and talk about themselves, make sense of their worlds, and decide about their health care. Stories can also provide important counterpoints and context that can reveal the blindspots of policymakers and researchers. Baiker and Finkelstien, for example, overlook the reasons why people with newly acquired health care might still seek treatment in an ER, an important consideration if transitioning people away from ER use for non-emergencies is an important policy goal.
In our own work, we have sought to understand how people made sense of the ACA. We found that high deductibles, the exclusion of some immigrants, non-Medicaid expansion in Red States, the politics of resentment, frustration with enrollment bureaucracies, and existing health conditions all colored how people made sense of whether or not the ACA benefited them. We found a range of responses across locations and sought to understand peoples’ assessments by rooting them in their work and health histories, local contexts, and political experiences. From people’s coverage stories, we learned that opposition to Obamacare was more nuanced and contradictory than survey data suggests.
Can stories be rigorous?
The other claim that Baicker and Finkelstein make against “stories” is that they lack rigor, something, according to them, that policy studies desperately need. This idea, that stories are somehow nebulous, imprecise or fluffy, is once again a basic misunderstanding of qualitative research. If rigor refers to the strength of a study’s methods in yielding results that tell us something important about the participants’ reality, then stories have a leg up on methods that create artificial conditions and ignore social context.
In our work, rigor derives from how the stories are collected and analyzed. We usually talk with people more than once, and we couple long-term observation with these interviews in order to arrive at a more nuanced view of stories that are contextualized in their larger life histories and cultural settings. Stories cannot be analyzed using the same methods or tools as quantitative data, but they can, and should, be analyzed. For decades, social scientists have employed rigorous methods for analyzing qualitative data including thematic analysis, phenomenology, discourse analysis, grounded theory and ethnographic analysis.
Finally, the value of stories and the rigor of their analyses means more than generalizability. Our research, and research like it, aims to collect stories to “saturation” rather than to generalize. As part of this we do not assign greater value to the stories that are representative of a dominant trend. Instead, we ask how can both the dominant narrative and the other stories that people tell both be true?
Stories about health policy are important.
They can provide context, address questions that cannot be answered by RTCs or similar methodologies, and illuminate the blindspots of researchers and policymakers. And, if collected and analyzed well, stories are also rigorous.
At the same time, we recognize that stories by themselves are not capable of addressing all research questions or providing all of the possible insights into a topic. But as we embark on this new political era partially sparked by discontent with health policy, we need more tools – not fewer – to interpret the conflicting stories people tell about navigating through our complex, changing, and unequal health system. Only through this inclusive, holistic approach will we be able to understand the complicated issues of our societies, like healthcare reform in the US, and to make the necessary policy changes to improve the situations of Sharon and others like her.
Jessica Mulligan is an Associate Professor of Health Policy and Management at Providence College.
Emily K. Brunson is an Assistant Professor of Anthropology at Texas State University.