Narrative Matters: The Power of the Personal Essay in Health Policy

Preface: About this book

Preface: about this book I f a picture is worth a thousand words, a good story is worth many columns of statistics. Stories present ideas, conflicts, and, sometimes, resolution. They have depth and dimension, drama and emotion, making them more memorable than data alone. This belief in the power of the story encouraged us—with support from the Kellogg Foundation—to start the Narrative Matters section of Health Affairs in 1999. It seemed to us that the personal narrative could bring a perspective to the quantitative material traditionally published in the journal that would promote understanding and help focus policy deliberations. In this spirit, one of us (John Iglehart*) wrote the following in the Editor’s Note in the first issue that carried Narrative Matters in July 1999: In the eighteen years that Project HOPE has published Health Affairs, America’s medical care system and the making of health policy have become big business. But the voices of patients, their families, and their caregivers have often gotten lost in the relentless shuffle. Health Affairs is a policy journal, and I never regarded publishing material that emphasizes the personal, the subjective, and the autobiographical as its reason for being. But through a confluence of factors, I have come to believe that we could enrich the journal by nurturing a form of health policy writing that affords greater opportunity for new voices to contribute to future debates. As we embarked on this adventure, we were aware of precedents in the field. Susan Sontag, tackling cancer in Illness as Metaphor, and Samuel Shem, writing with biting humor about the dehumanizing of medical education in House of God, would not have counted themselves as policy writers but were important contributors to the conversation in health policy at the time. More recently, Abraham Verghese and Atul Gawande, writing in the New Yorker and elsewhere, have used *John Iglehart is the founding editor of Health Affairs. their own experiences to raise understanding and concern about health policy issues —from AIDS in Appalachia to errors at the operating table. Fictionalized health policy narratives arrive in our living rooms nightly, with shows like M*A*S*H and E.R. raising awareness and affecting opinions about all manner of health issues from battlefield medicine to the health care safety net. Academic Medicine, the Annals of Internal Medicine, and the Journal of the American Medical Association have their own literary sections that bring a human dimension to their pages. Our enthusiasm for the narrative form was tempered by knowing that storytelling is not science but perception. As such, it is vulnerable to all of the human hazards of subjectivity. Dan Fox famously said that the plural of anecdote is policy, suggesting the force of the narrative. Harvey Fineberg noted, admonitorily, that the repetition of anecdote is not evidence, reminding us of the challenges that await the policy narrative editor. We have taken this concern seriously, using both the editorial staff of Health Affairs and a wide range of peer reviewers to read and critique every manuscript submitted. Although this does not exempt the column from subjectivity, we have invoked a process that brings many eyes and much thoughtful criticism to every published manuscript. The column has been popular from the outset with both readers and writers. Readers often tell us that the Narrative Matters section is the first one they turn to when opening the journal. There is brisk business in hits and downloads for Narrative Matters articles on the Health Affairs Web site. The U.S. Office of Civil Rights, the Washington Post, the Los Angeles Times, and National Public Radio have featured Narrative Matters writings and authors. Narrative Matters writers have come from many walks of life, including patients, the parents and children of patients, physicians, nurses, politicians, and foundation executives. Topics, likewise , have ranged widely, including essays on AIDS, drugs, death, race, old age, wheelchairs, drunk driving, and kidney transplants. The popularity of Narrative Matters as a policy forum as well as the wonderful literary renderings of many of the essays generated the idea of an anthology—an idea with which the Johns Hopkins University Press concurred. In selecting fortysix essays from among the more than eighty published to date, we chose those we believe to be very well written on representative subjects that remain topical—although this latter criterion did not present much of a problem because so many of the policy issues in health care seem to live forever...