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"Here's the Story: ..." Essential Elements of Essential Narratives About Health Care

Abstract

Summary: The Narrative Matters section of the health policy journal Health Affairs publishes compelling first-person essays called "policy narratives." Unlike other types of medical narratives, the health-related stories published in Narrative Matters incorporate issues related to health care policy, helping policymakers to see the human consequences of their actions. This is the story behind Narrative Matters and how it works.

Keywords: first-person stories, Health Affairs, health policy, literary nonfiction, medical humanities, medical narratives, narrative, Narrative Matters, participatory medicine, personal essays, policy narratives, storytelling.
Citation: Ficklen E. "Here's the story:" essential elements of essential narratives about health care. J Participat Med. 2009(Oct);1(1):e15.
Published: October 21, 2009.
Competing Interests: The author has declared that no competing interests exist.

Humans like stories. However it's put—we're hardwired, we come factory equipped, we have it encoded in our DNA—stories speak to us. And we pay attention to them.

That's why ten years ago in 1999, the extremely serious, highly quantitative, and widely respected health policy journal Health Affairs began a first-person story section and called it Narrative Matters (NM). As we explained at the time, the "voices of patients, their families, and their caregivers have often gotten lost in the relentless shuffle[1]" of America's medical system and the way health policy is created. The goal of NM was to nurture a form of health policy writing that would give these and other often unheard voices greater opportunity. An additional goal was to develop and nurture a type of writing that differed from the health and medical narratives already being published.

Over time, NM and its 2,500-word essays have continued to be defined. Fitzhugh Mullan, the original editor of the section, came up with the phrase "policy narrative" after several years to describe the types of essays that appear in NM. Yes, what we publish are first-person narratives dealing with an aspect of health care, but they also tie the specific personal stories to larger health policy issues. Each links a personal story or anecdote to a policy aspect that's larger than the story itself. The term "policy narrative" neatly sums that up.

Initially, what we look for in a submission to NM is, as its basis, a true story about a firsthand encounter with the health care system. But the story also needs to be so well and so perceptively told that it qualifies as literary nonfiction. (I much prefer the phrase "literary nonfiction" to the more popular "creative nonfiction." Too many people interpret the word "creative" to mean they have license to tinker with the facts in their nonfiction pieces.)

Literary nonfiction can plunge readers into a world where they come to know the characters involved and to care about them. Writers help us see, feel, smell, taste, and touch what's going on. They disclose telling details: while talking to the grieving family, did the doctor stand, leaning back against the wall or sit with them, hunched forward, looking the mother in the eye? Whichever way, the description is illuminating.

Additionally, we look for four key aspects in every NM manuscript submission:

  • A compelling story. We want to meet fully fleshed out human beings and find out what happens to them. When there's a patient in the piece, we don't want to be handed a bunch of medical facts about them. Who is this person? Put another way: make us care. (Technique tip: Think cinematically. Create a scene. Make the action vivid and revealing. This is where an ear for dialogue and an eye for detail come into play—and both are essential in our narratives.)
  • A complete story with a beginning, middle, and end (resolution). Not all stories have these components, but ours need to incorporate this type of strong narrative arc. It doesn't mean that a writer has to invent a way to resolve the issue being discussed or prescribe how new policy should read—sometimes just laying it all out in an insightful way is what's needed. It's been said that stories seek resolution; for us that means the narrative has to come to a constructed end and hasn't just dribbled away. (Technique tip: Define "the story," then ask, "What's the policy aspect?" Once you have these two crucial components, the outline of the narrative arc is underway.)
  • An insider's view. We—and our readers—want NM essays to show us something we might not know about but that the writer—patient, family member, clinician, or other caregiver—knows intimately. When writers are health care professionals, it also means that the story needs to be told in—and carefully translated into—lay terms. Most people who read Health Affairs aren't clinicians; which means that an NM story should be told in a way that all of our readers understand in all of its aspects. In our essays, we want readers to learn something new or to see the familiar from a new angle. The goal is to tackle a subject in a way that has readers saying, "Wow, I didn't know that" or "I'd never thought of it that way." (Technique tip: Think of someone specific—perhaps it's your neighbor Chris—who's very bright but isn't familiar with technical medical terms, shorthand, or treatment regimens. Write so that Chris will understand every single word, using wording heard in everyday conversations. For example: use the phrase "kidney failure" rather than "renal failure."
  • A big-picture message. Because Health Affairs is a health policy journal, NM essays have a policy surround to their stories. It's this policy aspect that converts first person stories into policy narratives. There isn't one model that's used to achieve this; the policy aspect can be implicit or explicit, for instance. But, for an essay to be published in our pages, something tied to policy needs to be incorporated. (Technique tip: Figure out the story's policy aspect early in the writing process. One way might be to determine whether the story fits into a "macro" aspect of health care that can be tied to a policy point, or if it's a "micro" aspect, namely a one time situation that's not part of a pattern or of anything larger than its own occurrence. If the answer is micro, then there isn't a policy point and it isn't right for NM (although it might be right for somewhere else).

As these four key aspects demonstrate, not all medical- or health care-related personal stories are cut out to be NM essays. We've found that some submissions have a strong personal story but lack a way to come up with a policyhook. Other submissions focus on an important policy aspect but don't have the right story to illustrate it. (Or as we sometimes note, don't have it yet. Keep us in mind, we tell writers, when it does come your way.)

There are other submissions that just aren't suitable for us, usually because they don't have a well told story at the heart of the piece. We don't want editorials (a short anecdote at the beginning doesn't make the manuscript a personal essay). We don't want case studies or flat, one dimensional patients and families. Nor do we want overly clinical pieces crammed with medical jargon (we're the wrong address for physicians who write directly to—and only to—other physicians.) And we're not the place for narratives with academic approaches that use phrases like "heuristic paradigm" and ”metacritical insight.”

NM essays are different from other kinds of writing often published in the medical humanities and health policy fields. As a result, we've developed clearcut ideas about yes-we-want-this and no-we-don't-want-that; it's not surprising that many manuscripts go through several rounds of drafts and revisions in the process of becoming polished and published NM essays. Our peer review process is a crucial part of this. Reviewers who have had their NM essays published often provide especially helpful and how-to advice on revising manuscripts.

The essays we publish in NM incorporate personal stories—often extremely personal stories—and we frequently ask writers to try to make them even more personal. Dig deeper, we encourage our authors, burrow further under the surface; keep thinking about what happened, how you feel about it, and what it means to you. And they do, with honesty and bravery. Their later drafts become richer, more nuanced, more engaged and thoughtful, more memorable—sometimes far more raw, as well. I'm awed by how many NM writers summon the strength to peel off yet another layer of skin and show it like it is.

The results are real life, story-driven essays that combine seamless narratives with skillfully woven facts, figures, and policy issues. Readers dive in at the first sentence and surface only at the end—moved, informed, and sometimes shaken with tears in their eyes. It's no wonder that many Health Affairs readers tell us NM is what they turn to first when a new issue lands on their desk, testifying to the durability of the idea of storytelling and its role in forming policy.

Letters to Health Affairs often reflect this concept. An NM essay by Paul Raeburn described how a father found sparse institutional support in his quest to get appropriate treatment for his mentally ill son (see Health Affairs, November/December 2004: Acquainted With the Night[2]). Soon after, Health Affairs received a response dealing with child mental health services from Rep. Henry A. Waxman (D-CA) and Sen. Susan Collins (R-ME): "We admire Raeburn's courage in speaking out," they wrote in closing, "Shame on our government if we do not listen[3]." Recently, an essay by Victoria Sweet (see Health Affairs, January/February 2008: Code Pearl[4]) called for a new, specifically kind, option in addition to "full code" and "do not resuscitate" orders and generated numerous letters, as did Janet Gildorf's essay (see Health Affairs, May/June 2008: The Disappearing Doctors[5]) that asked tough questions about the realities of hospital residents working under the so-called "80-hour workweek."

In 2009, NM celebrated its tenth anniversary. And in the decade since its founding, the section has continued to extend its reach and find new audiences. Narrative Matters: The Power of the Personal Essay in Health Policy, an anthology of forty-six NM essays, was published in 2006 [6]. According to surgeon and author Atul Gawande's comment appearing on the book's cover, the book "Showcases some of health care's most stunning writing. The stories are moving, eloquent, and often unforgettable."

Our essays are now being recorded, too. We have an official collaboration with National Public Radio (NPR), which often invites NM writers to read excerpts of their essays as on-air commentaries, with the NPR website linking back to the full-length essays on the Health Affairs website. We're also beginning to post our own author-read podcasts of essays on our website, which will soon be accessible on iTunes U.

Close to 150 NM essays have now been published, and account for a huge number of hits and downloads on our website.

National and local publications (including the Washington Post, Los Angeles Times, and New York Times) often reference, link to, or ask to republish the essays in their pages and online. The Best Medical Writing 2009 has included two NM essays (by Alok A. Khorana and Julie R. Rosenbaum) among its selections [7].

NM essays play an important role—and are paid attention to—in health policy circles. Personal essays help make concepts real and show policymakers that their actions have human consequences. They help crystallize policy thinking. By connecting a little picture (a personal story) to the big picture, the essays provide the insights and vitality that can't come from statistics alone. They tackle the job of telling the whole story, seeking to reveal meaning in the process.

In laying out what we set out to do in the narrative section of Health Affairs, it seems only fitting to give the closing thoughts about the power of policy narratives to an NM writer. As transplant surgeon, author, and writer, Pauline W. Chen explained in her NM essay: "Stories or narratives seem antithetical to today's emphasis on evidence-based clinical practice. They offer no statistical power, no data to repeat and confirm. But what narratives have, over all other forms of research, is the ability to get to the heart of the experience. . . . A single narrative is as powerful as any health care intervention; it is the one language that all of us—health care worker and lay person—share. And just as a patient with a certain disease will always bring to memory patients past and how we could have done differently, a single narrative can change the way we live our lives, practice our art, and even reform our policies. When we don't tell our stories, our experiences . . . can disappear forever. So can the possibility of a more relevant and meaningful kind of health care[8]."

That's the power of stories and storytelling, the why of policy narratives; the why of humans listening to them. And that's why NM and Health Affairs publish them.

References

  1. Iglehart J. ‘Narrative Matters’: binding health policy and personal experience. Health Affairs. 1999;18:6. [Google Scholar]

  2. Raeburn P. Acquainted with the night. Health Affairs. 2004;23:201-204. [Google Scholar]

  3. Waxman H, Collins S. Letters. Health Affairs. 2005;24:294 [Google Scholar]

  4. Sweet V. Code Pearl. Health Affairs. 2008;27:216-220 [Google Scholar]

  5. Gilsdorf JR. The disappearing doctors. Health Affairs 2008;27:850-854. [Google Scholar]

  6. Mullan F, Ficklen E, Rubin K, eds. Narrative Matters: The Power of the Personal Essay in Health Policy. Baltimore: Johns Hopkins University Press; 2006.

  7. Chen P, ed. The Best Medical Writing 2009. New York: Kaplan; 2009.

  8. Chen P. Stories beyond the box. Health Affairs. 2008;27:1148-1153 [Google Scholar]

Copyright: © 2009 Ellen Ficklen. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author(s), with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.


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