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

A Q&A with Carrie Levin: Moving Toward Shared Decision Making as Second Nature

Carrie Levin, PhDHow are patients and providers engaging in shared decision making conversations about cancer screening?

They aren’t engaging frequently enough. The Informed Medical Decisions Foundation has funded two studies on this question—the DECISIONS Study in 2007 and the TRENDS Study in 2011. In both instances, it was revealed that shared decision making (SDM) conversations do not occur very often in this country, especially around cancer screening decisions.

A key aspect of an SDM conversation is discussing both the pros and cons of each option, including the option to not have the test or treatment. We found that providers talk about the pros way more than the cons. The TRENDS Study looked at the state of medical decision making for nine common medical decisions, three of which were cancer screenings (breast, colorectal, and prostate). The study revealed that the pros of screening were discussed 51% to 67% of the time, while the cons were addressed only 7% to 14% of the time. That’s a pretty big difference between pro and con discussions.

Why is it important that both the pros and cons be discussed? 

 Our health care system is still very much a fee-for-service environment where providers are paid based on how many services they provide, instead of on the quality or value of care they provide. This makes for misaligned incentives that suggest to patients a “just do it” attitude. Informing patients of both the pros and the cons of the choices at hand helps paint a full picture. “Just having a test” sounds like a simple task, but it is one that can quickly cascade. And patients need ALL of the information up front in order to make informed choices.

Why is SDM important?

Because of your preferences as a patient. I say “your” because we are all, at some point, a patient. SDM allows us to surface the preferences each of us has as a patient. These preferences and values are key in cancer screening decisions because people can make completely different decisions based on the facts and how they interpret that information. If breast cancer runs in my family, I might make a different decision than my next door neighbor who doesn’t have a family history of breast cancer. If I’m 80 years old, I would likely have a very different perspective on screening for cancer than if I were in my 50s.

I think we sometimes consider screening decisions as, “Eh, it’s a blood test.” Or “It’s just a mammogram. It’s not that big a deal.”  Well, we’re not thinking about the downstream effects—“If I have this screening, what might it lead to? Unnecessary biopsies, false positives, etc.” Or if I don’t get screened, I might worry that I have cancer that hasn’t been detected.

The decision to be screened for cancer is a personal choice, and it’s not “one size fits all.” It’s going be different for everybody. And that’s why SDM conversations are crucial.

How do we make SDM part of routine care?

 We need a shift on both the provider side and the patient side. The patient side is happening slowly—patients are becoming more engaged and activated in their health care; they want to be at the center of their care. This new generation of patients has replaced the paternalistic approach to medicine with a participatory approach. I think about my grandmother and her views on medicine, “Whatever the doctor says, they’re the doctor. They know all.” Whereas, I might think, “Wait a second. My doctor doesn’t know everything.” They might know the evidence, but they don’t know about me and my life and my goals and concerns.

On the provider side, we are starting to see training for practicing providers in SDM, which is great. But we also need to provide our future clinicians with the skills to partner with patients. I think we still have a long way to go, but providers are beginning to realize, “Okay, I know a whole lot about the science, but there is this whole other piece that really needs to play into this.”

We’ve seen a seismic shift in the last 25 years. And although the road is long, I’m very hopeful and confident that in the next 25 years, it will be second nature to engage patients in conversations about these important health care decisions.

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Shared Decision Making And The Use Of Patient Decision Aids

More than 30 years ago, a Reagan-era Presidential Commission urged the national adoption of “shared decision making” (SDM) as a way to improve communication and informed consent in health care. Since then, many patient decision aids (PDAs) have been developed — tools that present information about common medical choices in standardized, user-friendly formats. More than 100 published, randomized trials using PDAs have shown many benefits. Continue reading

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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 … Continue reading

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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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