Implementation of shared decision making (SDM) and decision support intervention continues to expand its global reach as health care professionals are inspired by the success of such programs in the United States and other countries.
Dr. Belinda Hacking of the Edinburgh Cancer Research Centre is one such health care professional. She was introduced to Dr. Jeff Belkora’s personalized breast cancer decision support model, within the University of California San Francisco Breast Care Center Decision Services unit, when Jeff spoke at a conference sponsored by SCAN (South East Scotland Cancer Network) in Edinburgh in 2004.
In 2008, Macmillan Cancer Support provided Belinda and her team with a generous grant for a pilot study of an adaptation of Jeff’s model, which included providing patients with high quality information and then offering a personalized consultation by recording audio of the visit, taking notes and question-listing. The initial pilot study, which focused on patients with breast and prostate cancer, employed two part time “decision navigators” and one part time researcher. The second part of the pilot study, which is currently underway, evaluates patients with malignant brain tumors and colorectal cancer and employs a full time PhD student, and a full and part time decision navigator.
Results of the initial pilot study have shown that patients believe intervention helped them organize their thoughts prior to the consultation, empowered them to participate more during the visit and provided a sense of appreciation for the personalized information they received. In addition, health care professionals involved in the pilot assigned a greater degree of importance to understanding the patient perspective and eliciting preferences.
“I have learned [from this study] that if you believe in an ideal, then you need to pursue it tirelessly,” says Belinda. It takes time to change cultures and therefore, we have to be consistently patient, but insistent.”