Shared Decision Making at Informed Medical Decisions Foundation

Informed Medical Decisions Foundation
Boston, MA

The Informed Medical Decisions Foundation, founded in 1989 and based in Boston, Massachusetts, is a nonprofit organization working to advance research, policy and clinical models to ensure that patients understand their health care choices and have the information and support to make sound medical decisions.

The Problem
The Informed Medical Decisions Foundation supports research projects on shared decision making at both primary and specialty care demonstration sites across the United States. In addition, the Informed Medical Decisions Foundation: (1) facilitates a learning community, (2) provides patient surveys to help evaluate decision aids and their impacts, (3) provides access to a secure online data warehouse to capture patient survey data and (4) performs data analyses on survey process measures.

Currently, there are 10 demonstration sites representing a wide geography of rural and urban areas: a nationwide Breast Cancer Initiative, Dartmouth-Hitchcock Medical Center, MaineHealth, Massachusetts General Hospital, Mercy Clinics, Inc., Oregon Rural Practice-based Research Network, Palo Alto Medical Foundation, Stillwater Medical Group, University of California San Francisco Breast Care Center and University of North Carolina at Chapel Hill. Each site has a variety of provider organizations serving diverse patient populations. Some sites are affiliated with large academic medical centers, and others are affiliated with independent community practices.

A learning collaborative was formed from the demonstration sites. The Informed Medical Decisions Foundation facilitated monthly calls so that members of the group could share implementation strategies—ideas, challenges and successes—on shared decision making. These teleconferences provide a platform for learning how to overcome barriers to successful implementation in real world clinical settings.

The Solution
The Informed Medical Decisions Foundation has developed several tools to facilitate the shared decision-making model at its demonstration sites. The decision aids are presented in the form of text, graphics, video, personal stories, and more. These tools provide patients with unbiased information about a specific condition, evidence organized around a specific decision, with charts and graphs. The tools aim to encourage patients to understand evidence in the context of their own goals and engage in decision making with their physicians. The Informed Medical Decisions Foundation recognizes the need for physicians to put shared decision making into action and is in the process of creating a usable provider tool for clinicians. The Informed Medical Decisions Foundation now offers six steps of shared decision making that are focused on provider actions: (1) invite patients to participate, (2) present all available options in simple, easy-to-understand language, (3) provide information on benefits and risks, (4) assist patients in evaluating options based on their goals/concerns, (5) facilitate deliberation and decision making and (6) assist with decision making.

The Result
According to the 2007 National Survey of Medical Decisions, participants who had made medical decisions reported talking more about why they might want to have a medical treatment than about why not to have the treatment. The findings suggest that patients are not getting balanced information about treatment options during discussions with providers.

In 2011, a study published online by the Cochrane Database of Systematic Reviews examined the impact of decision aids. From 86 trials in six countries of 34 different types of decisions, the study found that decision aid tools led to greater knowledge, higher accuracy in risk perceptions, lower decisional conflicts, higher participation in the decision making and fewer individuals that were undecided about their care. In another implementation project that introduced the tools for some health conditions with treatment decisions that were also highly sensitive to patients' and physicians' preferences, decision aids were linked to reduced rates of elective surgery and lower costs. At Group Health, where this research was conducted, there were 26 percent fewer hip replacement surgeries, 38 percent fewer knee replacements and 12 percent to 21 percent lower costs over a six-month period.

Lessons Learned
To make informed decisions, patients must have adequate knowledge and understanding of issues related to their care. Essential elements to support shared decision making include improving knowledge about the risks, benefits and characteristics of medical procedures; and incorporating patients' values and preferences into the decisions.

Contact Information
Theresa Frueh
(617) 572-4699

This case study was originally featured in the HPOE guide: 'Engaging Health Care Users: A Framework for Healthy Individuals and Communities,' published January, 2013.