Advancing Shared Decision Making
The Informed Medical Decisions Foundation, now a division of Healthwise, has been working to advance evidence-based shared decision making since 1989. We believe the only way to ensure that high quality health care decisions are being made is for a fully informed patient to participate in a shared decision making process with their clinician. Through our research and advocacy efforts, we are dedicated to helping people make better health decisions.
We all naturally use both facts and personal stories to make decisions—whether we’re picking a new car or deciding on back surgery. Cognitive psychology tells us that both knowledge of a set of facts (“what are the facts?”) and a gist understanding of the personal relevance or meaning of those facts (“what do those facts mean to me?”) matter when we’re making decisions. Just like our neighbor’s rave review of his new car adds another dimension to that model’s Consumer Reports ratings, the stories of other patients can help us understand what impersonal statistics about surgery outcomes and complication rates might mean to our lives.
Because stories, or personal narratives, can help people make sense of information in a more personal context, some decision aid developers have used them as a way to help patients explore and clarify their preferences about a health care choice.
There is some debate about the value of personal narratives. But when used in health education materials, patient stories can help engage, inform, reassure, persuade, motivate, or model behavior. They can emphasize particular facts or emotions. And they can convey positive, negative, or neutral feelings.
How to Use Stories to Maximize Their Value
Data can tell a powerful story, too. However, we’ve all seen data used selectively to promote a particular point of view. So the question really is how to use data and personal narratives together to help people make better health decisions.
High-quality health education does not need to include patient stories. But used appropriately, stories can add real value for people facing hard health choices, without unduly biasing their decisions. How do we do that? Be authentic and true to a patient’s experience, and know that a personal narrative is only part of the equation. Always blend stories with statistics and facts, including data displays or comparison tables. These approaches may help minimize the potentially biasing effects of patient stories.
Be Clear About Purpose, Content, and Feeling
When using stories, think about the purpose they serve in the overall context of the other information provided. What elements of the patient’s experience support that purpose? And how can we ensure that they are authentic without being overly positive or negative? Patients’ stories can address many dimensions of the decision-making process. A patient story often models, in ways that other means cannot, the reasons why an individual made the choice she did, how she interpreted the clinical facts through the lens of her personal situation and goals for care, and how she participated in making the choice.
Show All the Options
Include stories from patients who have the right mix of clinical situation, decision, and rationale—and who can talk about their reasons for choosing in a clear and nonjudgmental way. And use stories both from people who make the mainstream choice (e.g., to undergo chemotherapy after local treatment for early-stage breast cancer) and from people who choose “the road less traveled” (e.g., to decline chemotherapy).
Reduce the Drama
It’s helpful to acknowledge the role of emotions in decision making, but steer clear of stories that are overwhelmingly vivid or melodramatic. It’s more important to show how different people consider the facts about the options in light of their unique personal preferences, weigh the tradeoffs, and arrive at different and equally reasonable decisions.
Ask Patients How You’re Doing
During the development process, ask both patients and clinicians if the information, including the facts and stories, feels balanced or if it feels slanted toward or against any particular treatment option. If it does the latter, explore why, and fix it.
Patient stories are engaging and help people and their caregivers remember that this is about real people and what matters most to them. Used in the right way, patient stories are a useful component of materials designed to help patients make challenging medical decisions.
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