Breast Cancer Initiative

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The Breast Cancer Initiative (BCI) was designed to promote the dissemination and implementation of breast cancer decision aids across a range of clinical settings, and to learn about the factors associated with continued use of decision aids in routine medical care. Through a joint effort with Health Dialog established in 2002, the Informed Medical Decisions Foundation funds this initiative to support shared decision making (SDM) in breast cancer centers across the United States.

How does the Breast Cancer Initiative work?

We currently have five breast cancer Shared Decision-Making® programs available to health care providers in the BCI program. The Foundation’s content development team, in collaboration with a nationally recognized team of experts, developed these programs. Each program includes a DVD and a booklet to assist providers in consulting their patients about breast cancer treatment options. Providers may request up to ten free copies of each of the five decision aid programs.

Karen Sepucha, one of the Foundation’s Medical Editors and director of the Health Decision Sciences Center at Massachusetts General Hospital, has led this initiative since its inception.  Under Karen’s leadership, the BCI has conducted three phases of dissemination activities to attract providers to participate in the initiative. The BCI is evaluated each spring through mailed surveys and phone interviews with participating sites. A subset of the providers also captures patient data in regards to program impact.

Why are decision aids important to breast cancer treatment decisions?

It is important for health care providers to tailor treatment for breast cancer to the patient’s own preferences and values because clinical data alone cannot determine the appropriate treatment. Breast cancer patients vary in their information needs and it is difficult for providers to pinpoint the highest quality and most relevant information for each patient. Therefore, decision aids are beneficial to the shared decision making process because they present the most up-to-date clinical information and serve as a guide for patients and providers while exploring treatment options and patient preferences.

How many sites currently participate in the Breast Cancer Initiative?

There is a high level of interest among sites that were contacted to join this initiative, with the majority requesting sample sets and about half signing a participant agreement form. Generally about 25% of sites that we contact to join the BCI use the programs regularly, and many have been using them for several years now. The Breast Cancer Initiative currently has 122 sites and 37 of these actively use our breast cancer decision aids in their practices. These sites include private practices, hospitals, academic medical centers and community health centers across the United States, with a majority in the New England and Mid-Atlantic regions. Through the BCI, we estimate that approximately 1,000 patients are receiving the Breast Cancer Shared Decision-Making® programs each year.

How can my site be a part of this Initiative?

If you would like to receive copies of the breast cancer programs to use with your patients or if you have any questions about the programs, please contact the BCI team.

Related Articles

Silvia K, Ozanne EM, Sepucha KR. Implementing breast cancer decision aids in community sites: barriers and resources. Health Expect. 2008;11:46-53.

Feibelmann S, Yang TS, Uzogara EE, Sepucha KR. What does it take to have sustained use of decision aids? A programme evaluation for the Breast Cancer Initiative. Health Expect. 2011; 14 (Suppl 1):85-95.

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