The danger of stories in global health
Authors: Sophie Harman
Journal: The Lancet (2020)

Have you heard the story about Fidel Castro and the Ugandan army? You know the one where after years of fighting, Yoweri Museveni and the National Resistance Movement come to power in 1986 and shortly after sending the new Ugandan army to Cuba for army medicals find that some soldiers are HIV positive. On discovering this, so the story goes, Museveni decides to be a leading example in the global response to HIV/AIDS to avoid any stigma or accusations that his military is weak. Several people told me this story when I was researching HIV/AIDS in Kampala in 2005. I now tell it to my students, embellishing a phone call between Castro and Museveni. The story gets a bit distorted as I try to hold the attention of 90 undergraduate students but does not lose the power of what it communicates about the relationship between militaries, national security, and global health. The story could be made up, another folk tale spread by Museveni or his political opponents. But it makes sense to the people who believe it and provides an insight into why militaries became a focus of the HIV/AIDS response in the early 2000s. Anyone working in science, medicine, and global health would have heard a story like this—an explanation as to how things came to be that is not necessarily based on evidence, fact, or peer-reviewed research. As efforts to contain coronavirus disease 2019 (COVID-19) show, one part of responding to outbreaks is to control the stories and misinformation that spread. Good science and evidence-based medicine can lead us to dismiss such stories, especially if they perpetuate falsehoods or a threat to life. Stories in this respect are dangerous. They are dangerous when they spread false information, they are dangerous when we impose single narratives, and they are dangerous when we think them irrelevant to the work of science, medicine, and global health. Stories become dangerous when we overlook or dismiss them as a source of knowledge. If the 2014–16 outbreak of Ebola taught us anything, it is if you want to understand how a disease spreads, look to the stories of the communities it affects. Stories of foreign actors coming into communities to spread disease matter because they change how communities and individuals are engaged in information exchange. Stories about fear of the military matter as they suggest inducement to behaviour change is more about short-term fear of immediate harm than long-term health and protection. If you do not listen to these stories, any intervention to stop the spread of diseases, however scientifically advanced, is likely to fail. Too often when we dismiss stories, we dismiss women. In many low-income and middle-income countries, it is women who experience the front line of health services. We know that it is women who bear the brunt of delivering on global targets of child health, are understandably the focus of maternal health, and are the ones more likely to go to HIV/AIDS care and treatment clinics to collect anti-retroviral treatment for themselves and their husbands. However, women's everyday knowledge and stories of how health systems function in particular settings are usually devalued or ignored, especially in policy and agenda setting. All too often women's stories reveal inconvenient truths for governments and international actors. The starkest examples come from women's stories of seeking abortion outside of formal health systems in countries where access to safe abortion is restricted or criminalised. Then there are the stories of women avoiding clinics to deliver their babies because they know someone who went to the clinic and did not come out alive. Scientific evidence from around the world shows that safe delivery with a skilled birth attendant and available support for birth complications reduce risks to both baby and mother. However, such evidence does not necessarily stack up if your lived reality is clinics that can be more than 50 km away from your home, are often understaffed, do not have basic supplies, may charge hidden fees and possibly detain you if you can't pay, and are the same place your aunty died in the past. These sorts of circumstances do not count as scientific evidence, but such stories draw on knowledge derived from experience and matter when pregnant women weigh up their birthing options. Stories may contradict scientific evidence, but they are derived from an everyday perception. You can throw as many incentives—baby kits, small payments, education campaigns—to get women to deliver in clinics, but unless you listen and see the stories of these women as an everyday reality of how health systems work, little will change. Other stories have much greater visibility. The rise of the global health hero story in the past decades obscures women further. Men working in global health have cemented their leadership through biographies and high-profile interviews that focus on their life stories. Male dominance of such stories is perhaps unsurprising given men disproportionately assume leadership positions in global health. However, male-dominated story-telling has important impacts on the wider politics of global health governance. It increases the space men take up in our narratives and imagination on global health, reproducing the norm of men as leaders and individual visionaries that get things done—the single heroic leader with the necessary vision, dynamism, and obstinacy to address the world's greatest problems. Focusing on the individual or emphasising their stubborn quest for change obscures the collaborative nature on which most breakthroughs and delivery in science and global public health take place. It also runs the risk of creating false idols, looked to as the solutions for every crisis. The individual hero, the single narrative, invisible women, and the stories we dismiss all point to the ethical dangers of who has the right to tell, use, and consume stories. Too often stories are used in ways that allow audiences to eat the trauma of the story-teller. Eating trauma has long been a device of international charities in their fundraising appeals. This presents a conundrum to story-telling in global health: how to communicate humanity in a way that does not feast on the trauma of others. We need to think through the ethics of how we use stories in our work, the role of the story-tellers, and the platforms and context in which they are happy or consent to story-telling. There is an ethical imperative to go beyond writer Chimamanda Ngozi Adichie's warning of the single story wherein "power is the ability not just to tell the story of another person, but to make it the definitive story of that person", to recognise the complexity of individual characters, and, fundamentally, to allow the story to adapt and change as people adapt and change. Story-tellers have to own their story and how it is told and used. The growth in measles in the USA and loss of elimination status during 2019 in Albania, Czech Republic, Greece, and the UK show the dangerous impact stories can have on the health of a population. Stories about the side-effects of vaccines based on rumour or something read on the internet are never based on fact but presented in a way that grasps the attention of concerned parents. Given the dangers of such anti-vaxxer narratives, the default would understandably be to dismiss such quackery and restate the science. Yet to dismiss is to be remiss. What such stories, even dangerous ones, show us is how society is responding and making sense of advances in science and medicine. Dangerous stories gain greater traction in times of economic and political instability. Stories cannot simply be rebuffed by science because at their core is a fiction and construction of a narrative that people can understand and, for some reason, trust, want to believe, or are encouraged to believe (by politicians, family members, or neighbours, among others) more than science and evidence. Appreciating the context in which such dangerous stories arise can help challenge them. In many ways, actors working in science and medicine recognise the power of stories to educate, inform, and create empathy, and in so doing are telling stories to popular audiences. The counter to fake news and false narratives is that people want to engage with knowledge, facts, and evidence. Audiences who may not read medical journals still marvel at advances in science and the politics of health, and seek knowledge to make sense of the world, especially at a time when the quality of debate and evidence in the political world is found wanting. The desire for knowledge and stories that help us make sense of ourselves, our bodies, and place in the world is reflected in the stories we want to read, see, and hear. The burst of clinician memoirs such as Adam Kay's This is Going to Hurt, Amanda Brown's The Prison Doctor, and Elizabeth Ford's Sometimes Amazing Things Happen has disrupted the dominance of how-to-get-rich, diet, and self-help books in non-fiction reading. Hospital dramas continue to be popular draws to television and streaming audiences. After the success of the Global Health Film Festival, WHO will host its own film festival, the Health for All Film Festival, this year. Audiences want stories about health and the people and systems that provide health care. People are curious about the mysteries of organs such as the brain, and are thrilled by stories of neurosurgeons such as Henry Marsh because he explains not only how the brain works but also his relationships with patients, colleagues, and his own health. We want to kick away the pedestal to see how clinicians cope with the everyday possibility of life and death. In turn, clinicians want to share their stories as a means of making sense of their own work and connecting with their patients. Common humanity expressed through stories connects story-tellers and audiences, clinicians and patients. The corollary to the danger of stories is that stories make people less scared. Fear comes from uncertainty, misunderstanding, and a failure to recognise humanity in one another. Stories are dangerous when they are ignored, taken out of context, are fiction masquerading as fact, or used to dominate, silence, or demonise other people. But stories have long been a means to explain what is happening to us, to think through our fears, and relate to each other as human beings. This is the real power of stories in global health: provision of comfort, making sense of our health and place in the world, challenging our preconceptions, and defeating fear through stories of common humanity.