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.

Current News from the Informed Medical Decisions Foundation

Using Stories to Help Patients Make Sense of Complex Information

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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A Roadmap for Patient and Family Engagement

It’s a sign of progress that so many of us in the healthcare field are talking about and addressing issues related to patient and family engagement: what it means, why it matters, and how it can positively affect experiences of … Continue reading

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Call for Keeping Patients Informed Is Heard Loud and Clear

  141 attendees… 290 Twitter participants… 1,599 tweets… 3,806,868 Twitter impressions… These numbers represent the impact of the recent Summer Institute for Informed Patient Choice (SIIPC) conference, held June 25-27 in Hanover, NH. Aligning with this year’s theme, “The legal … Continue reading

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The President’s Corner: June 2014

The Foundation will continue to maintain its identity as the research and policy arm of Healthwise, so we have been hard at work on our strategic plans for research and advocacy. Ben Moulton and Leslie Kelly Hall are leading the advocacy and policy efforts to transform the health care system into a truly patient-centered system. Advocacy efforts in the short run will focus on patient decision aid certification, promoting national and state policies supportive of informed and involved people facing health decisions, and penetration of shared decision making into new markets. Carrie Levin is heading the research efforts, with expert support from Jack Fowler and the rest of the research team. The evolving research strategic plan focuses on projects to improve decision-support and behavior-change solutions, projects to improve solution implementation, and projects demonstrating the value of these solutions in health care. As these projects unfold, we will be building a research infrastructure, developing clinical partnerships as collaborative “laboratories,” and further sharpening and standardizing key outcome measures. Continue reading

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A Call for Shared Decisions as Part of National Women’s Health Month

During the month of May, women are inundated with messages to visit their primary care provider and get screening tests done as part of awareness efforts for National Women’s Health Month. For many women, keeping track of what tests to … Continue reading

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