Healthcare’s Narrative Emergency
How fixing my own flawed story about racism in healthcare systems helped find a pathway to a better, truer story for many.
Over the last year, Harmony Labs has been developing an audience-narrative architecture to help the Robert Wood Johnson Foundation (RWJF) and its partners find “narrative strategies” and actual storytelling that would activate people in the U.S., especially healthcare professionals, to dismantle structural racism in America’s healthcare and public health systems. The foundation of this work was research on audiences and the health equity narrative landscapes they inhabit. This initial research helped surface the most promising opportunities for content testing and validation, from which our project partner Story Strategy Group convened groups of professional storytellers, anti-racism experts, community leaders, and content strategists to develop new stories that might transport audiences toward a target narrative of health equity. This piece is one in a three-part series from some of the subject matter experts and storytellers who worked on this project. You can explore the full findings here.
Science has discovered that the human brain produces deep stories to make sense of the world and form memories — to explain how everything works and why. The most widely shared of these stories determine our culture and the structure of our societies. They are held in our unconscious, center emotions rather than information, and defy rational argument. (Check out “The Science of Winning with Stories.”)
For better and worse, such stories create the limits of what we believe to be good, bad, possible, and impossible. Making a more just world requires understanding the deep stories most people hold and replacing many of them with better, truer stories.
Learning how to use storytelling as a tool for persuasion and change has been my work for a few decades — as a journalist, a writer, a marketer, and the founder of an international content advertising agency called Story Worldwide, which I sold in 2015. Since then I’ve been working exclusively with progressive causes and, occasionally, candidates to change our world for the better.
In 2021, the Robert Wood Johnson Foundation (RWJF) engaged Story Strategy Group (SSG) and Harmony Labs to find “narrative strategies” and actual storytelling that would activate Americans, especially healthcare professionals, to dismantle structural racism in America’s healthcare and public health systems. That summer, I joined the SSG team on the Health Equity Narrative project; HEN, as we called it.
I’ve worked on many ambitious narrative change projects (youth voting and civic participation, gender justice, nuclear disarmament, partnering organizers and artists to change the culture, among others). The HEN project, like several before it, at first seemed overwhelming — trying to advance racial justice in a massive healthcare system that touches and is touched by virtually every aspect of American society. It seemed like an assignment to change the whole world.
Complicating the task, my own deep story of America’s healthcare systems was at odds with the project’s mission: I believed the way to achieve racial equity in healthcare was to focus on economics, not race, by making healthcare free or, at the least, easily affordable for everyone. In our profit-centered system, health and well-being are retail commodities with a price tag way beyond the reach of many. In my deep story, most if not all racial disparity in health outcomes would disappear if we only had a national health system where high-quality care was available and affordable to everyone as a human right.
I now know that my own deep story of the U.S. healthcare system is widely shared by a lot of Americans, including many healthcare professionals. It felt completely right and true to me, but it wasn’t the whole story. Ultimately, I had to make the same sort of mental journey that is the HEN project’s goal for a majority of Americans. I had to embrace a narrative of how systemic racism in healthcare, in and of itself, shortens the lives and increases the suffering of people of color no matter what their economic status is. The true and powerful story we need, I realized on a personal as well as a societal level, is the one that narrates how we can and will eradicate racist systems in healthcare because systemic racism, all by itself, will keep killing people of color even if we manage to end all economic inequality everywhere and forever.
I organize my work with a flexible but rigorous process for finding and validating effective narrative strategies. It’s a multi-disciplinary process. Originally created by my content agency in 2005, it’s been tested and evolved since for dozens of clients — global corporate marketers and social causes and campaigns. It revolves around creating a “Story Platform,” my name for the core narrative threads that connect a culture-defining collection of deep stories. A properly constructed Story Platform has the potential to change culture by powering a new group of deep stories to alter or replace an existing collection. The “Quick Guide to Narrative Strategy & the Story Platform Process” can provide background.
The process is grounded in the classic practices of journalism and the social sciences. It centers detailed observation of people and culture. It begins by asking fundamental questions: “What exactly is going on? What systemic forces are involved. Who’s winning? Who’s losing? How is this everyday reality portrayed in the deep stories of the audiences we want ro reach?” Answering requires a wide search through histories, novels, movies, music, news stories, scholarly and scientific journals, opinion surveys, court decisions, and so on. The process also requires in-depth interviews with representative samples of the audiences we want to reach, as well as with people who know something important from first-hand experience.
Our early research showed that many Americans suspect, as I did, that the way to improve healthcare systems for people of color and everyone else is to change the economics. Surveys and in-depth interviews show Americans are frustrated by the high cost of medicine, resentful of long waits, big bills, and poor results, and fairly knowledgeable about the “social determinants” of health — socioeconomic status, education, housing and neighborhood, health insurance, environmental factors, employment, and more. All these factors are tied to money, of course, so all disproportionately disadvantage people of color in a racist society.
Along with accurately identifying the unaffordability of healthcare, polling says roughly 8 in 10 Americans agree with the inaccurate statement that “the biggest reason people in America become unhealthy” is “they make poor choices.” It struck me immediately that most Americans use this same story to explain poverty. Essentially, if superficially, majorities agree counterfactually that both lack of money and lack of health are largely “your own fault” in America.
This belief — “The problem is money, not race!” — turned up in the comments sections of major medical journals, where administrators and physicians wrote to question and deny the accuracy of studies and opinion pieces documenting racist structures in healthcare. Another sign of the healthcare industry’s refusal to think about racist systems in medicine is that the word “racism” wasn’t even a search term in PubMed, the government’s national medical library, until 2013.
A startling turning point for me came when I discovered that the denials and willful blindness inside the healthcare establishment persist in the face of convincing medical research over the last couple decades that proves skin color — not economics, not education, not any other socioeconomic determinant — is the only explanation for at least part of the large racial disparities in health outcomes in the U.S.
Experts recently summed this up in the “Annual Reviews of Public Health,” concluding dryly, “…[E]mpirical analyses have revealed the persistence of racial differences in health even after adjustment for socioeconomic status….” The article, “Racism and Health: Evidence and Needed Research,” is one among many peer-reviewed studies documenting that when researchers compare people whose incomes and education, for example, are the same, Black people, Native people, and many other people of color still are found to receive worse care and have worse outcomes than white people.
To define and quantify “worse care” and “worse outcomes,” the science of medicine and public health focuses on life-long outcomes across population groups. The study of racist structures in healthcare systems relies on measurements of “mortality and morbidity,” the medical terms that include life and longevity; illness and its consequences; death and its causes; suffering and quality of life. These are not peripheral concerns; they are involved in the deepest joys and fears of human existence and the personal stories underneath the statistics are deeply moving.
Other team members provided data about the American people’s prevailing deep stories of healthcare. Gretchen Barton conducted revealing psychological interviews with a representative sample of Americans. Melinda Weekes-Laidlow assembled and facilitated group discussions, primarily with people of color working in healthcare and communications. (See Melinda’s story of her experiences on the HEN project.) I conducted in-depth interviews with RWJF staff and attended a three-day convening of RWJF healthcare grantees.
The revelation that came from these findings transformed my own deep story of America’s healthcare system. The medical research, together with the emotional stories of lives shortened and damaged by racist practices, all pointed directly to a specific core story that had to be told to begin dismantling structural racism in healthcare. I had long understood that unaffordable care is a terrible injustice, especially in the world’s richest country. Now, I could see that even in a far-off utopia where every American has the means, education, and access to obtain uniformly first-class healthcare, people of color would still live shorter lives with more preventable ill health and needless pain and suffering than white people. This massive injustice would continue, it was clear, for as long as systemic racist policies and practices are permitted to exist in our healthcare systems. This is the reality of healthcare in present-day America.
Having wrapped my head around this reality and having understood the deep stories about healthcare in the minds of most Americans, I could proceed to creating the Story Platform for a new health equity narrative.
I like to say a Story Platform is a bit of data-driven poetry composed to serve as the emotional heart of many different stories that, being connected at the core, will have a cumulative impact on changing the culture in a particular way. Research findings over the past few years have contributed to defining properties that all Story Platforms must have. For example, they must include a story of how the future will be better once the change being sought has been realized.
In this project in particular, methodical research and careful listening told us a majority of Americans hold deep stories in which racism is not a primary factor in health disparities. So, before we could persuade anyone to get involved in changing the system, we would have to persuade them, modifying and overcoming their own deep stories about bad personal choices and lack of money, that the system really is racist and racist policies and practices alone are doing lethal harm to many people of color.
My notional Story Platform for this project turned out to be:
We will imagine a future
and win a system that gives us each
an equal chance to live
the long, healthy lives we want
and guarantees none of us
ever gets sick or dies
because of our bank account …
or our race or ethnicity.
This brought us to the final step in the process, crafting and testing very compact stories based on everything we had learned. The crafting part is all about the art of storytelling. The testing part, on the other hand, is all science and the tests were overseen by Riki Conrey, director of science at Harmony Labs.
Harmony Labs divides people in the U.S. into four major audience segments. As an alternative to segmentation only by demographics (such as race, age, and gender) or political support for a particular party, Harmony Labs uses values-based segmentation that derives from Shalom Schwartz’s theory of basic human values. Each audience is identified with a distinct set of primary values (shown in the chart). These values intersect and correlate with all kinds of other features conventionally used to segment audiences like race, age, and gender. (Explained further by Harmony.)
Altogether, SSG and Harmony created and tested 105 pieces of content in three rounds of testing. For the final round, SSG engaged five creative teams. Each of four was assigned to produce content for a single audience segment. My team alone was asked to produce content intended to cross borders and connect with all audiences. We went looking for the supposedly impossible-to-find American unicorn of common ground and, using the Story Platform above, we were able to do so.
“Team” may be grandiose: it’s me and Ellen Jacob, a veteran creative director in advertising, book and magazine publishing, an artist-photographer and an activist. (Ellen and I are married and work together often.)
In round three, a total of 28 pieces of content were produced as Facebook posts and tested for both persuasion and engagement. Testing showed that 11 of those 28 posts persuaded significant numbers of people that race was part of healthcare’s problem and that each of us has a role in changing that. Eight of those 11 persuasive posts, including the “top performer” across all audience segments, were produced by Ellen and me.
The most successful post (below) features a photo of two Native American women to illustrate a first-person story about a sister who is “hit hard” by diabetes. The post connects their personal struggle to the healthcare system’s structural racism, calling the system itself “untrustworthy.” The future is imagined as an opportunity to “win a healthcare system that earns everyone’s trust.” All in all, the story told in the post adheres to every point of the Story Platform. We collaborated on the post with the Native-woman-led narrative organization IllumiNative.
Harmony’s science director noted that the post produced double-digit movement toward agreement that race systemically determines quality of care, yet the words “race” and “racism” never appear.
God knows, our entire society needs drastic change. In the area of healthcare, the need is extremely urgent because racist structures are literally killing people of color everyday, while a profit-making model does the same to poor people of all races and ethnicities. It is no small matter, then, to understand better how to use storytelling to reliably persuade Americans of this lethal reality and to empower and activate them to work for a better future for everyone.
