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Cooperating Research Sites
The Foundation funds Cooperating Clinical Sites across the U.S. in an effort to learn how to integrate practices of shared decision making in the delivery of health care. These sites differ in size, location, type of institution and patients served, but all have the common goal of gaining a better understanding of the value and effectiveness of providing high quality decision support to patients.
Current Cooperating Sites include:
 Allegheny
General Hospital
Dartmouth
Hitchcock Medical Center
Massachusetts
General Hospital
University
of Arizona Cancer Center
University
of California, Los Angeles
University
of California, San Diego
University
of California, San Francisco
University
of Cincinnati
University
of North Carolina
VA Hospital
White River Junction
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Primary Care Initiative
The Foundation for Informed Medical Decision Making funds a unique multi-center project called the Primary Care Initiative. Each member of the Initiative has a project to integrate Shared Decision Making in primary care practice.
Project Descriptions for the Primary Care Initiative:
Massachusetts General Hospital
 Massachusetts
General Hospital is piloting a program to incorporate shared decision
making into adult primary care visits. During primary care visits,
the physician can prescribe the shared decision making program through
the electronic medical record and then the video is either mailed
to the patient or available for them to pick up. The electronic
prescription system gives a one page summary of the program and
allows the physician to click a link to send the program to the
patient. Programs available through this study are:
University of North Carolina
 The primary care program at the University of North Carolina aims to test the feasibility, effectiveness, and efficiency of a mass dissemination of the CRC screening decision aid within a single internal medicine practice with a goal of screening 75% of eligible patients. The decision aids will be mailed to eligible patients to encourage them to be screened for colon cancer.
University of California Los Angeles
 The program at UCLA plans to study the use of decision aids in small community based practices that serve low income populations to determine the barriers and solutions to integration of decision aids across the health care field. In addition to qualitative data collected, physician focus groups and patient interviews are planned to help resolve problems with implementing shared decision making.
Dartmouth Hitchcock Medical Center
 Primary Care research at Dartmouth Hitchcock Medical Center aims to assess the feasibility of integrating decision aids into general internal medicine practice while re-engineering the primary care visit and measuring decision quality. In previous phases of this study, patients received the Foundation’s program on PSA testing after a primary care visit; however in new phases of the study patients will receive the program before visiting their physician. This study aims to implement the program and 2 sites at DHMC and at the White River Junction VA to determine the feasibility of patients viewing the program before the primary care visit and to compare the outcomes for patients receiving the program before and after the visit. This study will also expand to include the CRC and some of the chronic condition programs.
University of California San Diego
 The
Primary Care Initiative project at the University of California
San Diego focuses on the logistics of implementing shared decision
making and creating buy in for the process at three different clinics.
This project involves several components including determining factors
that will predict a patient’s response to shared decision
making as well as determining ways to use technologies such as electronic
medical records and the internet to increase shared decision making.
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Breast Cancer Initiative
Through a joint effort with Health Dialog, the Foundation
for Informed Medical Decision Making funds an initiative to support
shared decision making in Breast Cancer Centers across the United
States.
The Breast Cancer programs were developed by the Foundation in collaboration
with a nationally recognized team of breast cancer experts. They
cover all the major decisions faced by an individual with breast
cancer in a comprehensive and easy to understand manner. The programs
include many women with breast cancer who talk about their experience
and the decisions they faced in the course of their treatments.
This initiative is a unique and growing effort that offers great
potential for learning and collaboration in the area breast cancer.
As part of the project, the Foundation provides data collection
and analysis to help learn about the experiences of patients and
health care providers in the breast cancer centers.
Organizations Involved
Organizations and providers who help women with breast cancer can
receive up to 10 free copies of each breast cancer program. The
following sites are participating in the initiative:
California:
Cancer
Resource Center of Mendicino County, Ukiah, CA
Kaiser
Permanente, Oakland, CA
Mendicino
Cancer Resource Center, Mendicino, CA
University
of California, San Francisco, SF, CA
Wilshire
Oncology Medical Group, Pomona, CA
Colorado:
Mile High
Oncology, Denver, CO
Rose Medical
Center, Denver, CO
Sally
Jobe Breast Center, Greenwood, CO
Community
Medical Center, Toms River, CO
Delaware:
Christiana
Care Breast Center Newark, DE
Iowa:
Iowa Clinic,
West Des Moines, IA
Massachusetts:
Women’s
Imaging Center, Berkshire Hospital, Pittsfield, MA
Breast
Health Center, Beverly Hospital, Beverly, MA
Blum Center
for Patient and Family Education, Dana Farber Cancer Institute,
Boston, MA
Department
of General Surgery, Lahey Hitchcock Clinic, Burlington, MA
Cancer
Resource Room, Massachusetts General Hospital Cancer Center, Boston,
MA
South
Suburban Oncology, Quincy, MA
Southcoast
Oncology, North Dartmouth, MA
Outpatient
Oncology Clinic, Sturdy Memorial Hospital, Attleboro, MA
Oncology
Department, Wing Memorial Hospital, Palmer, MA
New Hampshire:
Dartmouth
Hitchcock Medical Center, Hanover, NH
New Jersey:
Fox Chase
Virtual Health Cancer Center, Gibbsboro, NJ
Ohio:
Marcell
Community Library, Cleveland Clinic at Fairview, Cleveland, OH
Flower
Hospital, Sylvania, OH
Pennsylvania:
Alleghany
General Hospital, Pittsburgh, PA
Fox Chase
Cancer Center, Philadelphia, PA
Please contact bcaprograms@fimdm.org
if you are a provider and would like to use the programs with your
patients. Patients, please request copies through your providers.
Breast Cancer Shared Decision Making®
Programs
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Early Stage Breast Cancer:
Choosing Your Surgery presents information about
mastectomy and breast-conserving surgery (lumpectomy) with
radiation. For most women, survival is similar with either
option, as are the overall discomfort, complications, and
emotional effects of surgery. The surgeries differ in terms
of the time and energy required for treatment, the risk of
local cancer recurrence, and appearance. A woman’s choice
depends on how she feels about these differences.
The program reviews the role of radiation therapy for women
who choose lumpectomy as well as for women who choose mastectomy
but who have 4 or more positive lymph nodes and or tumors
larger than 5 cm. The purpose and possible complications of
lymph-node surgery, including sentinel-node biopsy, are also
discussed.
"I immediately felt a
connection with the women in this tape. It was comforting
to hear what treatment decisions they made and as a result,
I began to feel more in control of my own situation."
DCIS (Ductal Carcinoma in Situ):
Choosing Your Treatment
While DCIS itself is not life threatening, over time some
cases do progress to invasive cancer, which can spread beyond
the breast and throughout the body. Treatment of DCIS has
two main goals: preventing invasive breast cancer and preventing
DCIS from coming back.
The treatment choices are:
Lumpectomy (surgery to remove only the DCIS and a margin of
healthy tissue), also called breast-conserving surgery.
Lumpectomy and radiation.
Tamoxifen (hormone treatment for women with hormone-receptor
- positive breast cancer), generally combined with lumpectomy
and radiation.
Mastectomy (surgery to remove the breast).
In general, the more treatment, the greater reduction in
both the risk of developing invasive cancer and of having
DCIS come back. However, a woman needs to weigh the possible
downside of more surgery or other treatments against this
advantage. The videotape and booklet are designed to help
a woman decide which treatment is right for her.
"This was a balanced report
of all the options. Hearing the women interviewed helped me
feel less confused and frustrated about all the treatments
and what to expect."
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Living with Metastatic Breast Cancer: Making the
Journey Your Own
This documentary style video program features interviews with
four women living with metastatic breast cancer. Because the
diagnosis affects so many parts of life—family, friends,
work, play, finances, faith—it means coping with many
changes. These women describe how they cope while living with
breast cancer that’s spread, and some things that helped
them.
The program is designed to help women with metastatic breast
cancer recognize they are not alone in dealing with their
illness. The program is intended to help women keep a positive
outlook and work with their medical team to make decisions
about their treatment.
"Because
the diagnosis affects so many parts of my life – family,
friends, work, play, finances, faith – it means coping
with many changes. Listening as these women describe living
with breast cancer that has spread, and some of the things
that have helped them was a profound experience."
Early Breast Cancer: Hormone Therapy and Chemotherapy
– Are They Right for You?
This program presents information about additional treatment
choices (i.e., systemic adjuvant therapy, described below)
for women after mastectomy or lumpectomy with radiation. These
choices include having:
Hormone therapy (e.g., tamoxifen, aromatase inhibitors)
Chemotherapy
Both hormone therapy and chemotherapy
No treatment at all
This program is designed to help women decide whether to have
additional treatment, and if they decide to have treatment,
which type to choose.
"Now I am able to think through
what each option might mean for me and this has given me a
renewed confidence."
Breast Reconstruction: Is It Right For You?
presents information about reconstruction choices for women
after mastectomy: no reconstruction, prosthesis, and implant
and flap procedures. This program is designed to help women
decide whether to have breast reconstruction, when to have
it, and which type to choose. Additional procedures to match
the other breast are also discussed.
"After watching the video I
realized that any approach can be a reasonable choice. It
depends on what matters most to me."
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National Survey of Medical Decision Making
The National Survey of Medical Decision Making is be conducted by investigators from the Survey Research Center and the Center for Behavioral and Decision Sciences in Medicine at the University of Michigan. The purpose of the project is to understand how medical decisions are made. Specifically, to describe the extent to which patients who have made decisions had basic information about their options and the implications of those options. Additionally, to understand how patients’ perceive the decision making process. The survey will include a probability sample of 3000 adults, age 40 or older, selected based on random digit dialing who have recently made medical decisions.
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Decision Quality Initiative
Decision quality is defined as the extent to which treatment reflects the informed preferences of patients and is implemented. The goal of the decision quality instrument development project (DQ) is to provide an assessment of the quality of medical decisions across populations of patients. The instrument developed will be used to evaluate the extent to which patients are informed and make decisions that, on average, are consistent with their values. The DQ instrument will be used as an intervention or assessment if given to patients before they have made a decision to identify knowledge gaps to fill and patient priorities to incorporate. To develop these instruments, it is necessary to identify a core set of facts and values that are salient to the decision.
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George Bennett Dissertation Fellowships
The Foundation for Informed Medical Decision Making funds a fellowship program to support dissertation research in shared medical decision making. The grants are designed to support basic and applied research that can advance the field, and to attract scholars to the field of shared decision making in medical care. Current award recipients include:
Jared R. Adams is earning his M.D. Ph.D. in the Center for the Evaluative Clinical Sciences at Dartmouth Medical School, researching shared decision making for patients with severe and persistent mental illness. His research will assess the decision making needs of people with severe mental illness and their clinicians and create a model decision aid that meets the local needs of clients and clinicians. (Awarded September 2005)
Melissa Constantine is a Ph.D. candidate at the University of Minnesota’s School of Public Health, Division of Health Services Research & Policy. Her dissertation, “The Effect of Institutionalization of Medical Care on Quality of Patient’s Informed Consent,” evaluates how well-informed a patient is before given the Quad Test, which is administered to pregnant women to determine if there are chromosomal abnormalities. Ms. Constantine is working to determine the association between the process of obtaining informed consent and the three elements of informed consent: intentionality, understanding and freedom from a controlling influence. (Awarded September 2006)
Rebecca Anhang Price is a Health Policy Ph.D. candidate on the Medical Sociology track at Harvard University’s Graduate School of Arts and Sciences. Her research assesses the effects of a direct-to-consumer advertising campaign for a cervical cancer screening test. It will evaluate the association between campaign exposure and decision-making processes, patient satisfaction and the clinical appropriateness of test use. (Awarded September 2006)
Mary Ann Murray is on the Health Sciences faculty at the University of Ottawa’s School of Nursing. Her dissertation is “Efficacy of a Training Intervention on the Quality of Nurses’ Decision Support for Patients Deciding About the Place of Care at the End of Life: A randomized Control Trial.” The aim of this project is to determine whether the quality of nurses’ decision support can be improved with a theory-based skills building intervention. (Awarded September 2006)
Daniel Menchik is pursuing his doctorate at the University of Chicago’s Department of Sociology. Mr. Menchik’s research will try to identify the strategies used by patients that enable successful input into their treatments and indicate the conditions under which physician decisions are influenced by colleagues or scientific research. (Awarded September 2006)
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