Inspired by Dr. Jeff Belkora's work with shared decision making at the UCSF Breast Care Center, Dr. Belinda Hacking brought a similar model to Edinburgh. Macmillan Cancer Support provided Belinda and her team with a generous grant for a pilot study integrating decision support into medical care for breast, prostate, brain and colorectal cancer. Preliminary results have shown that patients believed the intervention had a positive effect on their experience.
In 1960, Harriet Gudenburr embarked on a nursing career that would span more than five decades and would touch the lives of hundreds of patients. In September 2011, Harriet retired from her position at Allegheny General Hospital where she had established the Informed Decision Making program at the hospital's Breast Care Center. In partnership with the Informed Medical Decisions Foundation, Harriet and her team ensured patients were provided shared decision making (SDM) opportunities on their breast cancer journey.
"I think it's not so surprising that the actual decision making tended to be more doctor-directed than the patients wanted," said Dr. Michael Barry, president of the Foundation for Informed Medical Decisions Making, who was not involved in this study.
Others, however, defended the researchers' conclusions, saying the study verifies research data that's been published in other countries. "They just took a different way of looking at the likely benefits of mammographic screening and the overdiagnosis rate," said Dr. Michael Barry, president of the Informed Medical Decisions Foundation.
The field tests in the last year show that the items on the whole are performing as intended, and patients find the surveys acceptable and feasible. There is growing interest in the research community to use these instruments, and we have been exploring interest in clinical community to extend their use.
Our primary hypothesis is that participants who utilize the “Early Breast Cancer: Chemotherapy and Hormone Therapy are They Right for You?” (translated) DA in shared decision- making will experience more value-congruent decisions than the control group. The specific aims of the proposed work are to: 1) determine the utility of the DA in decision-making; 2) evaluate satisfaction with the DA; and 3) assess and compare the participant’s satisfaction with and value-congruence of her decision after exposure to the DA with those of the control group.
Dartmouth-Hitchcock Medical Center (DHMC) is comprised of physicians, specialists and other providers working together at different locations to meet the health care needs of patients in northern New England. The Center for Shared Decision Making (CSDM) at DHMC, opened its doors in 1999 as the first center in the U.S. to be dedicated to shared decision making, and became a Foundation funded primary and specialty care demonstration site at that time. True pioneers in the shared decision making arena, DHMC continues to perfect the process of providing access to decision aids and decision support to patients as a routine process of care.
The University of California San Francisco (UCSF) Breast Care Center (BCC) is a high volume specialty clinic providing multi-disciplinary care in a National Cancer Institute-designated Comprehensive Cancer Center. Eight medical oncologists and four surgeons, among dozens of specialists, providers and staff conduct more than 1,000 consultations annually, caring for more than 600 newly diagnosed patients each year. The Breast Care Center at UCSF became a Foundation funded specialty care demonstration site in 2005 in order to offer their patients a unique type of decision support and guidance along their journey.
Our early decision aids were created on Laser Videodiscs, seen above. These Laser Discs are about the size of a LP record and have to be played on special player that typically cost around $8,000. While the disc may look fairly primitive, in reality it was very advanced and innovated. Like computerized decision aids today, you were able to customize content based on each person, and input data to better assist in making decisions. The disc above is a Treating Your Breast Cancer decision aid, aimed at helping women choose the best course of treatment for them. Our very first decision aid was a Benign Prostate Hyperplasia aid (BPH), created in 1990 in VHS format. We have come a long way since laser discs and VHS, but continue to work hard at creating decision aids to help people make informed health care decisions.