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

IPDAS Workgroup to Recommend Guidelines to Improve Quality of Decision Aid Evaluation Studies and Reporting

Carrie Levin, PhDA review of the 86 trials included in the 2011 Cochrane Review of decision aids found great variability in the reporting of decision aid effectiveness. In some studies, the measures used to evaluate decision quality and other outcomes were not named. In other studies, the decision aid tool itself was not well described, making it hard to know what components were part of the DA. These gaps in reporting DA evaluations led to the creation of the International Patient Decision Aid Standards Reporting Guidelines (IPDAS-RG) Workgroup, of which I am a member. The goal of this workgroup is to develop a generally agreed-upon list of core items for reporting decision aid evaluation studies to help facilitate comparisons across studies, as well as improve the way individual studies are reported. The workgroup is led by Karen Sepucha (Massachusetts General Hospital), Healthwise medical editor; and Richard Thomson (Newcastle University, UK).

The workgroup first met in 2015 to develop an initial checklist of items that should be included in a research report on decision aid effectiveness. This checklist included more than 50 items. Earlier this year, the workgroup conducted the first round of a Delphi process—a quantitative technique used to generate consensus—to gain agreement from a diverse international audience of researchers, clinicians, and policy makers on the importance and clarity of items proposed by the group. More than 100 stakeholders from more than 10 different countries responded.

At the end of March, the IPDAS-RG Workgroup reconvened to discuss the results of the first round of the Delphi process, narrow down the list of core items, and ensure that each item was clearly stated. Participants will be able to provide feedback on the revised checklist in the second round, which begins in May. The workgroup will convene once more to develop a guidelines statement and publish version 1.0 of a checklist for universal reporting guidelines of decision aid evaluation studies.

“Beyond the more immediate goal of improved transparency, quality, and completeness of reporting,” Karen and Richard believe this project “is likely to improve dissemination and uptake of the results among non-research stakeholders such as clinicians, patients/consumers, advocates, and families.” And that, they say, could support widespread implementation of decision aids across different care settings.

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The President’s Corner: March/April 2016

Prostate cancer screening has been in the news again lately, and it continues to merit the label of “the controversy that refuses to die.” Let’s review some of the reasons for the recent resurgence in attention around the prostate specific antigen (PSA) test. Continue reading

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A Big Thanks to Those Who Are Making Shared Decision Making a Reality Every Day

As Shared Decision Making (SDM) Month comes to a close, we thank our blog post contributors, who wrote about the important role that shared decision making has played in their personal and professional lives. These SDM Month blog posts, our webinar, and other activities show how—at the beginning of life, at the close of life, and at every point along the way—shared decision making touches patients and the people who care for them. Continue reading

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Costs Should Be Part of the Equation

I have excellent health insurance, but like millions of Americans, I have a high-deductible health plan. As more and more employers move to this model, it is important that we, as consumers of health care, consider the costs of care as part of our treatment decision-making process. In what other buying decision would we ignore costs? Could you imagine comparing dishwashers or car models without looking at the price tag? Why would health care be any different? To illustrate this point, consider my own cautionary tale. Continue reading

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The Value of Shared Decision Making in Achieving “More Good Days”

Several decades ago, I spent 3 months caring for my father before he died at home. For my mother, alluding to the end of my father’s life was difficult. She left his blue blazer hanging on the back of a dining room chair where he had always left it, ready for work the next day. It remained there while he lay in a hospital bed in a room off the kitchen, until one day, a week before he died, the blazer was gone. My mother had removed it. That’s how she signaled to the rest of us that she was preparing to let go. Continue reading

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