Support Service for Breast Cancer Patients Hailed as Model of Innovation

By Robin Hindery

From left, Joyce Lee, Jessica Bryant and Alexandra Teng, premedical interns at UCSF's Breast Care Center, meet with Jeff Belkora, right, director of the center's Decision Services program.

A UCSF service that helps breast cancer patients navigate through difficult treatment decisions has been selected as a national model of care by the Mayo Clinic Center for Innovation.

Decision Services, a 6-year-old program offered to patients of UCSF’s Carol Franc Buck Breast Care Center at UCSF Medical Center at Mount Zion, was one of three winners of a recent Center for Innovation competition focused on initiatives that are responding to human need to improve health care. Representatives from each program presented their work at the Mayo Clinic’s annual Transform symposium in Minnesota on Sept. 15.

In his talk, UCSF Decision Services director Jeff Belkora, PhD, noted that while “a lot of progress has been made and cancer is no longer a death sentence, the treatments are very invasive…and the outcomes are still uncertain.”

Patients need to be informed and involved in making sure they receive medical care that will address their concerns and fit their personal priorities, their work and their overall lives, Belkora said. That is the need Decision Services aims to meet.

The program provides new patients to the Breast Care Center with materials such as DVDs and informational booklets that cover topics ranging from pre-cancer to metastatic cancer.

New patients also receive phone calls from trained premedical interns who ensure that “the right materials get to the right patients at the right time,” Belkora said. The interns also help patients develop questions to ask at their next doctor’s appointment, and then accompany the patients to that appointment, taking notes and audio-recording the session.

“We can give patients a summary of everything the doctor said so they can review that in the comfort of their home and in the company of loved ones even if things have gone in one ear and out the other the first time around,” Belkora said in his presentation.

Belkora was accompanied on stage by one of the current Decision Services interns, Alexandra Teng, who described the profound impact the program has had on her.

“Coming into this experience, I don’t think I really understood what patients go through and how much a doctor can influence that,” Teng told the audience of health professionals from around the world. “Now that I’ve had a chance to be fully immersed in patient questions and concerns, I know how I can help patients find treatments that will fit their whole life. I know not only that I want to be a doctor, but I know how I want to be a doctor.”

David Rosenman, MD, a Mayo Clinic physician who spearheaded the Transform symposium, said that in selecting the three winning programs, he and his fellow judges were looking for “ideas that had the potential to transform for the better the way health care is experienced and delivered.”

UCSF’s Decision Services stood out among the dozens of entries because it aims to improve communication between patients and providers “at a point in time that is especially critical, both in the lives of the patients it serves, and in the evolution of this country’s health care services,” Rosenman said in an email message.

Jeff Belkora, director of UCSF’s Decision Services program, displays a selection of patient-oriented DVDs focusing on various aspects of breast cancer treatment.

Belkora said he hoped his appearance at the symposium would generate further interest in expanding decision support services far beyond breast cancer and UCSF. He is already collaborating with partners both within the University and beyond, including the UCSF Helen Diller Family Comprehensive Cancer Center; the UCSF Department of Orthopaedic Surgery; the Palo Alto Medical Foundation; a cancer center in Edinburgh, Scotland; stand-alone resource centers in Santa Clara, Mendocino and Humboldt counties; and the Wellness Community, a network chain of cancer resource centers.

“We’re taking proven approaches to decision support and we’re translating them from academic settings into community settings,” Belkora said in a phone interview the day after his appearance at the Transform symposium. “I work with visionaries and early adopters that come in all shapes and sizes. I’ve got these pockets of interest all over the world, and we think that as we learn more about how to overcome organizational and financial barriers, we’ll be able to spread this work further and further.”

Belkora also has a long-term vision of a “premedical corps” — modeled after the Peace Corps or Teach for America — that would allow recent college graduates to spend a year or two before medical school delivering decision support to patients and gaining the kind of hands-on experience Teng and others have found so valuable.

The honor from the Mayo Clinic was not the first acknowledgement of Decision Services’ innovative model. In 2008, the Agency for Healthcare Research and Quality within the US Department of Health and Human Services recognized the program’s work in a profile on its Innovations Exchange website.

Decision Services was launched in its current form in 2003 and is provided free of charge thanks to support from the Breast Care Center, the Foundation for Informed Medical Decision Making, and other donations.

In addition to his role at the Breast Care Center, Belkora is an assistant professor of surgery with an appointment at the UCSF Institute for Health Policy Studies.

Photos by Susan Merrell

Related Links:

Decision Services at UCSF 

Carol Franc Buck Breast Care Center at UCSF 

Mayo Clinic Center for Innovation, Transform symposium 2009

KQED Forum interview with Jeff Belkora
Aug. 28, 2009

Guidesmith: Jeff Belkora’s website promoting patient participation in medical decisions